The committee met at 8:58 a.m.

[N. Simons in the chair.]

N. Simons (Chair): Good morning, everyone. I’m Nicholas Simons. I’m the Chair of the Children and Youth Committee and the MLA for Powell River–Sunshine Coast.

I’d like to welcome the members back and welcome those who are with us in the audience and who are joining us listening to Hansard broadcasting services. We’re happy to be here in Fort St. John and grateful to be holding our meeting on the traditional territory of the Dane-zaa people — specifically the Doig River, Blueberry River and Halfway River First Nations.

On behalf of the committee, I’d like to express our appreciation to everyone who was able to make time to meet with us yesterday and today, especially families with children with special needs. We recognize and understand that additional pressures sometimes make time very, very valuable. To spend some time with us is definitely appreciated. We thank you for providing us your input.

Our committee is made up from MLAs of all parties in the Legislative Assembly. Our role is to raise awareness and understanding of B.C.’s child- and youth-serving system. It’s the broad range of services to children in the province. We happen to be focusing on a sector that is maybe less spoken about than is necessary.

We’re undertaking a project on children and youth with neurodiverse special needs, including those with autism, FASD and developmental delay. We began our project by hearing from the Ministry of Children and Families, the Ministry of Health and the Ministry of Education to learn more about the services that they provide and how they’re structured. We’re holding public hearings to hear from parents, caregivers, service providers and other organizations on how assessment and eligibility processes can be improved.

[9:00 a.m.]

Comments can be submitted to this committee by June 7, which is a Friday. For information on how to do that, it’s all on the Legislative Assembly website under “Parliamentary committees.”

We will be deliberating on what we hear, and we’ll use what we talk about to make recommendations to government. I know that we’re all hoping that government takes these recommendations that we make and considers them fully when formulating policy. Each speaker here will have ten minutes to speak, followed by five minutes for questions and comments.

Today’s meeting is being recorded and transcribed. All audio from our meetings is broadcast live via our website, and a complete transcript will also be posted.

I’ll ask now for members of the committee to introduce themselves. We’ll start with Ronna-Rae Leonard.

R. Leonard: I’m Ronna-Rae Leonard. I’m the MLA for Courtenay-Comox on Vancouver Island.

R. Glumac: I’m Rick Glumac, MLA for Port Moody–​Coquitlam.

R. Singh: I’m Rachna Singh, MLA for Surrey–Green Timbers.

M. Stilwell (Deputy Chair): I’m Michelle Stilwell, MLA for Parksville-Qualicum and Deputy Chair of the select standing committee.

E. Ross: Ellis Ross, MLA for Skeena.

L. Throness: I’m Laurie Throness, MLA for Chilliwack-Kent.

T. Wat: Teresa Wat, MLA for Richmond North Centre.

N. Simons (Chair): We have a variety of different parties and different regional representation as well. So I’m pleased about that.

Assisting the committee today is, of course, Stephanie Raymond, who you’ve met at the door, and next to me is Jennifer Arril from the Clerk of Committees office. Simon DeLaat and Amanda Heffelfinger are from Hansard Services. We thank them and everyone back at Hansard Services who are going over our notes trying to figure out who said what, when. We thank them all for making sure that what we talk about is recorded accurately.

Without further ado, I believe we have, for our interest, Tana Millner from the Child Development Centre Society of Fort St. John.

You have the floor, and we’ll have some questions after. We’ll try to keep it pretty…. We’re a little bit early.

Presentations on Children and Youth
with Neurodiverse Special Needs

CHILD DEVELOPMENT CENTRE SOCIETY OF
FORT ST. JOHN AND DISTRICT

T. Millner: I’m just going to go a bit from my notes and a little bit off the cuff. I have a full range of what I want to say here.

Good morning. Thank you so much for coming to our region. It is such a refreshing opportunity to be able to speak one-on-one with you guys and not to be having to go to Victoria or having to type it in or whatever it might be. So I really appreciate you guys spending the time here today.

I am the executive director for our child development centre here in Fort St. John. We have been in operations for over 45 years, providing services to families with kiddos with special needs. It’s been a privilege to actually work for the centre. It’s an amazing organization with very dedicated and amazing people.

Our centre delivers a number of foundational programs that are funded by MCFD. I’m sure you’ve heard of most of them. It includes infant development, pediatric early intervention therapies, which encompass occupational therapy, physiotherapy and speech language services. We also offer supported child care, family support services, which are unique to our centre. There are not that many centres that have the funding for the family support worker, which is critical in providing services to our families. We also offer respite and skills for kiddos zero to 19, and we do provide an autism program for families, through the individualized funding program.

Our roles, I believe, in the lives of the children and families that we serve are critical, especially in a northern, rural community because they do not have other opportunities. We are it. We are the hub of children services for special needs, especially for kiddos zero to six in our community.

I will say that one of the strengths of these foundational programs that MCFD provides for us is that any family that has concerns or questions about their child’s development, their abilities, can come to our centre. They don’t have to go through a long referral path. They can self-refer. They can go to their physician. Their physician can refer. The public health nurse can refer. A grandparent…. It doesn’t matter. If there is a concern, they come to us, and we are happy to provide these services.

It allows pathways for families to access these specialists in the early years, which are extremely critical, in whatever way best meets the family’s needs. In our agency, we also offer additional services and supports that benefit families, which include parent and parent connections groups and a family drop-in program as well. I think, really, what’s important to mention is that having that opportunity for families to connect with other families that are facing the same challenges and crises is critical.

[9:05 a.m.]

The referral approach for these foundational programs is so beneficial for these families. It does create a significant challenge for us that are providing the services, however, and that is access. For over a decade, which I’m sure you are all aware of — you have probably heard us talking about this for a long time — our core programs, those of early intervention and infant development, have not received any increases in funding. In comparison, the demands for services have increased substantially, not only in numbers but in the complexity of the families that we are serving. It’s not just the children; it’s the families.

For families, this, of course, means significant wait times, decrease in service intensity and often aging out of service before you are even able to provide these critical foundational interventions. I had one mom, actually…. This is kind of going off topic here. But three weeks ago she sent me an email and said: “It’s critical that my child gets speech services.” I called her back, and I said: “I appreciate your concerns. Your referral, we received it in December. You were put on the wait-list. The earliest your child will be receiving services is probably September or October.” And that’s only because she’s been prioritized. Had she been a typical kiddo with not marginal speech delays, it would have been a year and three months.

I said: “There are private speech therapists that you can go through — none in our community, but there are some in the surrounding communities.” She called me back yesterday — I’ve been out of the office for a couple days — crying. She said: “I cannot afford to go to Grande Prairie or Chetwynd or wherever the therapists might be, and I can’t afford to bring them here. Please, please, get her in sooner than September.” And I cannot because it’s just where she is on the list.

I deal with that, not on a regular basis. Generally, it’s our therapists that are hit with that, day after day, for families that are waiting for services. So for the staff at our centre, who have worked diligently to provide amazing services with solid accountability…. We’re all CARF-credited. I don’t know if any of you are familiar with the CARF process, but it’s pretty in depth. It means that we deliver pretty outstanding, stellar service.

The effects on the children and families waiting for this service are damaging, especially on our staff. They carry large caseloads. Our caseloads are double or better than what their colleges recommend. The pressures of those wait-lists…. They’re oftentimes going to bed thinking: “Oh, I can fit one more on this caseload because they need it. I know this kid will benefit if I can just see him a couple times.”

They’re frustrated. The families are frustrated. And there’s a watering-down of services, so you’re not getting to see a child once a week or twice a week. You’re getting to see them once every six weeks and providing tools to the family to support them which, for some kids, that’s all they need. But for a lot of our caseload, that isn’t it. So they’re not getting the best possible service.

With these pressures on our staff, we have noticed an increase in staff burnout. We have retention issues, which partly, I think, are due to that burnout, and also demographically. I have heard this repeatedly: that they do not have satisfaction in their jobs because they don’t get to provide the best service.

Recruitment, I’m sure you guys are aware, is an ongoing challenge. We don’t receive any funding for recruitment. My last ad that I put in the PT, the physiotherapy website, was $600. That comes out of fundraised dollars because we don’t have it in our general operating fund.

Now, I’d just kind of like to shift a little bit, regarding the autism program. We do offer an autism program for our families once the child is diagnosed. I think the biggest challenge in the system right now is that children are not getting diagnosed early enough. They receive foundational programs up until their diagnosis. Then, once they transfer into that autism funding stream, they use their funding, fill out the paperwork and do what they can. But it’s a very challenging process for those families.

Also, for the people that are providing these services — the autism program — it’s costly. We have not yet broken even on our autism funding program. We do it because we know the families need it. We’ve been in a deficit every year we’ve ran the program. It’s because you have families that are vulnerable, challenged, can’t make appointments, have a hard time dealing with filling out the paperwork, need support to do that and just don’t show up. But I, in a unionized setting, have a staff that I have to pay, regardless if a child shows up or not.

For us, it’s been challenging. I have gone to my board every year and said: “We’re going to delegate some of our fundraised dollars for this program because it’s such a necessity in our community.”

[9:10 a.m.]

Other programs? My colleagues in Cranbrook just closed their autism funding program specifically for that reason. Though the individualized funding plan gives some choice to the parents, it also creates challenges for them. Navigating the portal is not the easiest thing. Especially if you’re a family that’s in crisis, it’s extremely challenging.

I would say that the impact of our autism funding program way outweighs us being in a deficit. It is an amazing program, and it’s something that needs to continue.

I think, too, with the individualized funding program and the opportunity for parents to use that…. It’s a great tool for them, but also what we see is that when they do that and move away to private therapists that are doing services in their homes and that kind of stuff, the collaboration between the other services, specifically speech therapies, is a bit fractured because you’re not working together.

It also creates an administrative burden on us because we’re now supporting another therapist to provide service, and it’s report-sharing, report writing. It may seem minimal, but every minute that that therapist is sitting at their desk is critical. It’s just something that I think would be important to reflect upon — that ability to combine services.

Let me see. What else did I want to touch on? I briefly wanted to touch on this, only because I promised one of my colleagues, who you probably know — Margaret Warcup. She has been diligently trying to change the system on how we stat for our services. God love her. She said she wouldn’t retire until it was fixed. She has since retired, but her voice is still extremely strong in our arena.

For years and years, the way we stat has not reflected the service that we provide. The definition of indirect and direct services is convoluted. Now, I mean, most of the time when we’re doing quick touch-ins with our families and stuff, it’s via email or text. It’s not necessarily face-to-face, where your child is sitting in that room with you. Yet that is not direct time, and we have a quota that we have to be at direct time. When you are providing direct service to a child, you really are providing service to the entire family.

Perhaps a way to frame this…. It’s not so much supporting just the child; it’s the entire family. That is our centre-based philosophy, and that takes time. It doesn’t necessarily fall into the criteria of what direct service looks like, so I do think that really needs to be looked at closely. For instance, when we’re doing services on some of our Indigenous communities, we go out to the Halfway River, the Blueberry as well as the Doig River First Nations communities. In order to do that, it’s four hours of travel, return. We go out. Sometimes the families are there. Sometimes they’re not. They are in other activities or something has happened within their family dynamic.

Sometimes we can go out there, and they don’t want to see our therapists. They just want to sit and chat and get to know us. That is not a statted amount of time, which is ridiculous. In order to build that capacity with the family, that trust and that important connection with them, that they are comfortable with us supporting their child, is critical. That’s just something that I wanted to throw in.

In closing, of course, numbers. I know data is important. I’m not saying we don’t need to stat. I just say we need to do it in a different manner. Last year we served over 1,232 children and their families in our centre. Our region encompasses Fort St. John, Taylor, Hudson Hope, Prespatou, Cecil Lake, all the surrounding rural areas, as well as the three Indigenous communities.

Our average caseload per therapist is about 89 kids. Their college requirement is 25 to 35, and that’s 35 for a skilled, seasoned therapist. What we recruit in our region, because we are a rural community, is new grads. So, really, that should be at 25.

Our wait-list for speech — we’re at 137 right now. IDP is 92 kiddos. I briefly want to touch on IDP because I’ve been really advocating for funding specifically in that program.

R. Leonard: What’s IDP?

T. Millner: Oh, sorry. Infant development. That is my worst thing when I’m talking about services. I always use the acronyms.

[9:15 a.m.]

We did a full review of our contracts, and my wages and benefits for the staff in IDP were at 90 percent. You cannot operate a program with your wages being at 90 percent. I also own a business, and there’s no way in heck I could turn a profit or even break even when wages were at 90 percent.

So we hashed it out. I said: “I need more funding.” What resulted was a reduction of hours for a service that had one of the highest wait-lists.

Every recommendation is going to say: “More funding to core services.” But I really think that if you can provide a clear and concise pathway to that…. We did receive an insurge of money for SCDP. It wasn’t a ton, but it was a little bit, which was great. I would have taken that money and put it into IDP, because I know what’s most important for our community.

I think having those open conversations and saying, “Hey, you know what? Yeah, I know you’re giving SCDP funds across the province, but we could really use this….” Talking to your directors of operations and your communities would be extremely beneficial.

N. Simons (Chair): Tana, SCDP, again?

T. Millner: Sorry. Speech-language pathologist.

N. Simons (Chair): Okay, SLP.

T. Millner: SLP, yeah. When I do our AGM, I bet you that there are three times in the crowd when people are like: “What’s that?”

N. Simons (Chair): I thought I heard SCDP.

T. Millner: Oh, SCDP. Supported child….

N. Simons (Chair): Yeah, okay.

T. Millner: Our IDP right now is at 102. PT, which is physiotherapy, is at 91, and occupational therapy is at 92.

R. Glumac: So 92 what?

T. Millner: Children waiting for services.

N. Simons (Chair): Wait-list.

T. Millner: Wait-list. Yup.

Wait times range from anywhere between six months, and our highest is a year and four months for speech services.

Also, Kim Hughes-Brinsky, who is the ED in Dawson, wasn’t able to attend today. She developed the flu. She wanted me to share her numbers as well, just so you can have an impact of the northern region. She serves 777 children. Her wait-lists for IDP are 132. Speech, for her, is 174, and a physiotherapist is at 69. They’re not small, and they’re not insignificant. These are families that are desperately waiting for service.

I will say that I work with the most dedicated, innovative and passionate people that I have ever worked with. I came into this career not planning to ever come into it. I had a very successful business, and my friend needed some accounting advice at the centre. I went there to volunteer, and I have not left. I’ve been there for 13 years.

It’s an amazing facility. It’s an amazing stream to be in — children and youth with special needs and their families. It’s a blessing to be able to work with these families, and we want to continue to do so in a productive and best-practice way so that they’re receiving the best services.

I want to thank you so much for letting us present to you guys. It does make you feel like your voices are heard. We talk about this all the time. We’re steadily asking the ministry for more funds, which is ongoing, but to be able to have the opportunity to chat about it is validating, so thank you very much.

N. Simons (Chair): Thank you very much.

T. Millner: I’m sure you probably have questions for me.

N. Simons (Chair): I just want to say that it was a very eloquent and concise presentation. You covered a lot of issues and, I think, the really important ones for our committee to hear.

Ronna-Rae has a question.

R. Leonard: Yes. Thank you very much for your presentation. I do have two questions.

You talked — and we’ve heard this now for two days — around the issue of the fractured aspect of collaboration and whether or not you have a good network of communication. Can you describe some of the agencies that you’re talking about, in terms of the collaboration and the breakdown?

T. Millner: Yeah, for sure. As most of you are aware, we lost our funding for Success By 6 and Children First, and it was refunnelled into other funding models. But what that allowed us the opportunity to do was meet as a collective group of organizations that provided services. That has changed now, with this new funding model. For us, in a small community, we are actually really well positioned, because we know most of the service providers, and we have that opportunity to collaborate.

I would say, with the individual funding piece, that we’re not as connected with the private therapists, like Scilla and that kind of stuff, for autism. They’ll ask questions of our therapists and stuff, but there’s not that cohesive support of the family. That would be what they receive when they are having the funding through our organization. We just see a different model of support when it’s embedded in one….

R. Leonard: You were, basically, the lead agency before. So everything kind of was….

[9:20 a.m.]

T. Millner: Well, I would say, probably, it’s only been the last seven or eight years that really…. We started our autism program probably eight years ago now, I think. We’ve been in operation, off the cuff a little bit for the first year, and then formally started the program.

Before that, I don’t know that there were any other services in the community. There has since been a few that have come, which is fantastic. I think that’s great. I just feel that being able to provide that support to the family, specifically, is really critical. I don’t know…. With the IF, I’m not sure that that is possible — the amount of service that the family is receiving.

R. Leonard: Okay.

N. Simons (Chair): Thanks, Ronna.

Laurie, we’re really short on time.

L. Throness: If you could just tell us what your total budget is and how much you are short.

T. Millner: Well, our total budget is $2.4 million, and we should probably be about $3.6 million, if we wanted to fully fund the positions and provide support to all families in our community. But I know that’s pie in the sky. I would suggest one additional FTE in every service delivery, especially for early intervention and IDP.

L. Throness: You had an RFP problem earlier this year. Could you just tell us, in a few sentences, what happened and how that was resolved?

T. Millner: Yeah, for sure. I’m sure you guys have all been aware of, like I had mentioned earlier, the Success By 6 and Children First. Well, in our community, $227,000 left the community and probably about $130,000 went back in. I’m not 100 percent sure of what went into the AIDP funding stream, because we don’t hold that contract. But for us, we were told, rather quickly, that no longer were we going to have that funding stream and, as well, our earlier centre contract was cancelled a year early, with minimal warning.

Then we were told: “Not to worry. This RFP is coming out, and it’s going to encompass everything that you’re going to need, and just wait for it.” So it did. I think it came out end of November, beginning of December and needed to be submitted by January 16, which is a pretty quick turnaround most times, if you’re working straight through that season. But, of course, it fell over Christmas, and there were many organizations that were scrambling. It’s an intense job to go through the RFP process, and to be limited in time and direction was really challenging.

My recommendations for that going forward — there will be other RFPs coming out; I know there are some big ones coming that have our region concerned and our community as a whole — are to allow more time and speak to the communities on what they need. Do not use a paintbrush for: “What is good in Vancouver is the same for what is good in Fort St. John.” It just does not work.

In the RFP, our community, our RFP was for $100,000. Dawson’s was for $73,000, I think. But then they gave Tumbler Ridge, Chetwynd and Fort Nelson $38,000 each. Those communities are extremely different. They have different demographics. They have different children. It’s different who’s in their community. Based on numbers alone, there should have been some sort of process for what the formula was to allocate these funds.

In the case of a couple of the communities, they didn’t get their RFP in, in time, because they couldn’t do it. They didn’t have the capacity or the time to do it. They have since been approached again to re-apply. However, I think that that blanket paintbrush approach is ineffective and, probably, more costly.

I think, moving forward, in your guys’ RFP process, when it goes through, consult with your communities and provide information. We have asked for the formula of how they determined that previous RFP. I bet you I’ve asked for it about eight times. It’s a big process. It’s algorithms and blah, blah, blah. Not once have we seen it.

N. Simons (Chair): Make sure you copy your MLA on that request.

T. Millner: I have.

N. Simons (Chair): Rick, quickly.

R. Glumac: Just quickly, in the previous community, I asked a question about the prevalence of children with fetal alcohol syndrome. Statistically, it’s two and a half times greater than children with autism, but they didn’t have any children there that they were helping that had fetal alcohol, and I’m wondering if it’s the same situation with you and whether you had any thoughts on that.

T. Millner: Well, for quite a few years, we had the key worker position for FASD in our community, so we were able to support those families. It was removed and sent to Prince George, and we did notice a definite shift in the families accessing services. That was definitely a challenge.

[9:25 a.m.]

I would say that there is definitely a disconnection between the amount of funding that families with autism diagnoses receive as opposed to those that have an FASD diagnosis. I believe that that has caused even some friction within families.

The ability to be assessed, having an assessment in a timely manner when you are in the early stages of development is critical — all the science supports it — yet these kids aren’t being diagnosed in time. We advocated for assessments to come to Fort St. John. Send a team. Stay a week. Use our centre. Do whatever you need to do, because for families that are vulnerable and in crisis, the thought of travelling to Prince George or Vancouver is overwhelming. For that child who you are trying to assess, you’re taking them out of their familiar space.

I think the biggest challenge is having those kiddos assessed earlier. It doesn’t matter if we’re talking FASD or autism. That’s critical in providing services for them.

N. Simons (Chair): We’re hearing a pattern. I’m just going to…. No more questions here, but we really appreciate you for being here. Thank you for your candour. It’s going to be a major part of our deliberations.

T. Millner: Thank you very much. I appreciate it.

N. Simons (Chair): Without further ado, we’re going to welcome Autistics United Canada via teleconference. I believe we have Vivian on the telephone.

Hello, and welcome. You have the floor.

AUTISTICS UNITED CANADA

V. Ly: Hello. Thank you for the opportunity to speak. My name is Vivian Ly. I’m an organizing member of Autistics United Canada, the first national self-advocacy organization by and for autistic people.

I work with other autistic people, parents and service providers. I am autistic myself. Not too long ago I was considered a youth as well.

My own experience with how neurodivergent youth are identified, monitored and referred for services is that I was missed, ignored and disbelieved. There were signs when I was a young child, but language atypicalities were dismissed as me being ESL, though my English has always been good, and I wasn’t truly ESL. Sensory integration atypicalities were thought of as hearing loss. That was a big one. I’ve always had higher than average hearing, and then that was that. Everything else was labeled as laziness, inattention, mental illness, emotional instability, quirkiness or simply being a sensitive girl.

At no point was autism pointed out to me or my parents — that it may have been the root of my struggles, though in retrospect, it’s pretty glaringly obvious. I was the one who first brought up autism. But I wasn’t supported by my school or my parents to seek a diagnosis. I was discouraged and told to just try harder.

By the time I was able to figure out how to get a diagnosis on my own, I was at the cusp of adulthood and had dropped out of school because of the lack of support. I was told that by the time I could be seen for a diagnosis, I would be too old and wouldn’t qualify for an assessment. I then had to navigate adult diagnosis — even worse opportunities for assessment.

I was on the wait-list for over two years for one of the handful of clinicians in B.C. that do adult assessments for free who could see me, which delayed my education further. Two years may not seem like a lot, but when you’re in such an important transition period, from high school to university, that delay has huge impacts on motivation, self-esteem, health.

Now, with a diagnosis and actual supports in school, I am attending university. It took years, literally years, but at least I’m getting some of the help that I need. Not all, but some.

My story isn’t unique. It’s quite common. Autistic women, non-binary autistic people and racialized autistic people are often underdiagnosed or misdiagnosed when we are young. I have a whole host of misdiagnoses.

Public perception and even clinical assessments of autism are based on outdated ideas of what autism looks like, built on historic samples of mainly white, middle-class boys. There isn’t a current understanding of what autism looks like in girls and women, and there isn’t enough outreach to communities of colour about autism.

I personally come from a refugee family. My parents don’t speak English fluently. They didn’t even hear about autism until I brought it up.

[9:30 a.m.]

Systematic gaps during transition periods leave people waiting and waiting for a diagnosis, while funding and supports often dwindle with time. This late-diagnosis phenomenon is reflected in what parents and service providers share with me, and I’m sure you’ve heard about it lots already. They tell me that they’re huge wait times, compounded by the fact that children over six aren’t given as much support.

What we see repeatedly is that if a child doesn’t get services in their early years before school, they are put on wait-list after wait-list and sometimes wait three or four years to receive psych-ed testing or referrals to assessment — a massive gap of children that are going entire years at school being treated like a problem child instead of a child with different support needs. This wait is too long for children over six. Many families aren’t able to skip the wait times by going private. This exacerbates educational inequality based on income.

I want to point out also that women and black, Indigenous, people of colour are more often missed in those early ages as well. They’re the ones most likely going through the long wait times later in school or in adulthood, which again contributes to inequality — this time, gender and race.

Another parent commented to me on the change from full-time support for families during the first six years — this is for autism — to absolutely no support in school. It’s very shocking that we have nothing in terms of funding. You’re trying to figure out how to navigate school and supports with no guidance and about a quarter of the supports that you had even only months before. That transition from early intervention to school age is absolutely a bumpy one and one that I don’t believe families are prepared for it. It’s not even discussed. It’s just given as fact.

I also want to point out, in my own experience and from the experience of others, the disbelief in the school system, particularly for invisible disabilities like ADHD and anxiety. Children are told they’re just lazy, and they need to try harder. The school is not helpful in navigating supports. They don’t help parents to work together with them to get the referrals that they need.

Children need to fail hard and struggle before they’re even assessed, before the school starts taking things seriously. This is a problem. We need to fail hard before getting supports. We lose out on time. We lose out on life. We go through trauma in that process too, having to endure that before we get the support we need.

This is indicative of a larger problem — not recognizing students with ADHD and LD as having a disability and how you’re setting out these modes of support. ADHD and LD should be recognized just as much as autism. There are a lot of co-occurring disabilities with autism and ADHD as well but some have others….

There is sometimes a two-tiered system. We talk about autism a lot, and we’re not paying attention to other neurodevelopmental disabilities.

For example, a parent with ADHD who grew up in On­tario was provided support — ADHD was seen as an LD, with funding attached — while her child right now in B.C., with the exact same diagnosis, struggles much more. School won’t do a full psych-ed until she’s much older. Again, instead of recognizing that value of early intervention, we’re playing catch-up after the fact. It’s more costly on families. It’s more costly on the system.

More about autism assessments. Again, I’d like to reiterate that the assessment process still relies on stereotypical and outdated information, like autistic people can’t be outgoing or social. Not only that, they base diagnosis almost entirely on information prior to the age of five, whereas there is not a lifetime approach of how autism is developmental. We do grow up. There are changes that happen.

Another parent went in with a ten-year-old. The clinician didn’t factor any current issues. Pretty much everything that happened before the age of five had a lot of conflicting information anyway because of other health challenges.

[9:35 a.m.]

From a community standpoint, it’s also really hurtful, because the entire process is based on what you feel is wrong with your child. When you have a house full of neurodivergent people and you are already part of a thriving and happy autistic community who are supportive and accepting of your child as they are, you aren’t really taken as seriously. It’s entirely pathology model–based. It’s looking at, “There’s something wrong with you, and you need supports,” rather than: “You have support needs; therefore, you need supports.”

Some of my suggestions. Really, really improving wait times after age six and into the transition into adulthood. Another suggestion would be for youth who want to access service programs on their own. They may not have parental support. So we need to support youth in self-advocating when now the system caters to parents. All the language we’re using…. Even this public hearing is using parents as the only resource and the only way that we’re getting help to these youth. The processes often require parental input. Not everyone has supportive families. Not everyone can rely on their parents to do this.

Parents can also have disabilities. My third point here is that autism, ADHD and learning disabilities all run in families, so how is the government making things more accessible for disabled parents? For example, things like that there is a lack of alternative options for phoning in for appointments. That’s a huge issue if you’re a parent that also has a communication-related disability. You may even use AAC yourself or have social anxiety.

There’s an overwhelming amount of information that parents are given. Processes are convoluted. How do we make them plain language and easy to understand?

N. Simons (Chair): Thank you, Vivian.

V. Ly: I do have a bit more, but I’m not sure if I have enough time.

N. Simons (Chair): Okay. Well, we can listen, or we can ask questions. It’s up to you.

V. Ly: I’ll just continue on, and then I’ll take questions.

N. Simons (Chair): We won’t have time, but that’s okay. You can continue. That’s fine.

V. Ly: Pardon?

N. Simons (Chair): We won’t have time for questions if you continue now.

V. Ly: Okay, sure.

At some point, eligibility criteria is another word for gatekeeping. You get supports; another person doesn’t. It’s creating segregated classrooms when what we need is universal design and inclusion. There needs to be supports to parents in general and schools in general, because that means the children with disabilities are going to benefit most from an increase in these kinds of supports. We don’t have to go through the hoops to get what all children need but especially what neurodivergent children benefit from.

For specific services, though, eligible services should not be focused on ABA for autism. Research is starting to say what autistic people have been saying all along — that ABA promotes camouflaging, which is harmful to autistic people’s mental health. It’s linked to incredibly high suicide risk. It’s dehumanizing, traumatizing, even the more so-called positive forms of ABA.

Eligible therapies should include more therapies that work with autistic traits and turn them into strengths, rather than extinguish them. Certain developmental therapies may fit the bill. There needs to be other choices than ABA, choices that are also evidence-based. I’m not speaking about pseudoscience therapies like chelation but the ones that don’t have such a behaviour focus, that maybe focus more on sensory integration and communication needs.

Again, I want to reiterate: where are the neurodivergent children and youth at this hearing? I understand that parents have an important voice in these discussions, but we can’t forget to at least attempt to talk to the children and youth who are most directly impacted by these decisions.

The adults that these children grow up to be…. We’re not voiceless. We’re here too. We’re the real experts of our own experiences. We went through these systems as kids. We should be consulted on these matters, as well, at every part of the process.

That’s what I have prepared.

N. Simons (Chair): Very well said. I have to say that I really appreciate your input. We do have time for a question, if anyone wants to ask.

Ronna-Rae has a question.

R. Leonard: Quick question. Just at the very end, I didn’t quite catch, you were talking about…. It’s the acronyms again — ADA?

N. Simons (Chair): ABA.

M. Stilwell (Deputy Chair): Applied behaviour analysis.

[9:40 a.m.]

R. Leonard: You said that therapy should not be behaviour-based, but it should be…. Was it function-based? You said something else, and I didn’t quite catch it.

V. Ly: I’m just saying there are alternatives out there that recognize that autistic people have minds, thoughts and feelings, that don’t just focus entirely on external behaviour — things that can possibly, or in some examples, be developmental in nature, that work on relationships, that work on sensory integration and communication, helping develop self-advocacy skills. All of these are as important — I’d argue more important — than just making us look as normal as possible.

R. Leonard: Would you say that’s more function-based — that’s something we’ve been hearing — as opposed to pigeon-holing it and fixating on behaviour?

V. Ly: Yes. Something that supports what the autistic person wants, instead of saying: “You should be like this.”

R. Leonard: Okay. Thank you.

N. Simons (Chair): Okay. Vivian, we have Laurie, who has a question for you.

L. Throness: Just one question. Thank you, Vivian. You said that diagnosis is based on outmoded criteria. Can you talk a little bit more about that? Are we misdiagnosing people?

V. Ly: Oh, heck yes. So a lot of the experience, particularly of autistic women, is that they are diagnosed with simply anxiety and depression, without knowing that autism — like, not having your support needs met for autism — is the cause of the anxiety and depression, BPD, OCD.

A lot of the co-occurring disabilities are found, but not autism itself. A quarter of women with eating disorders are also autistic, but there’s a rampant bias in the diagnostic process. There are two theories out there — extreme male brain theory — that say that the autistic mind is a male mind. That’s not true. That’s not the experiences of members of our community.

It’s really harmful how diagnostic criteria are still focusing just on systemizing behaviours, external behaviours, when for autistic women, a lot of our problems are with executive functioning. When a lot of our problems are stemming from, for not just autistic women, but for this one…. It’s that entry fee.

If you look in the criteria of the DSM-5, we only get one recent mention of sensory atypicality. That’s shelved under restricted and repetitive behaviours, whereas, for a lot of people, that’s the biggest part that impacts the daily functioning. It’s that sensory piece.

It’s not just, “Oh, we respond to different sensory environments badly,” it’s like: “We actually have hypersensitivity and hyposensitivity.” That’s not mentioned at all in the DSM, even though that is very well known in the autistic and autism community — autistic being autistic people and autism being autism.

L. Throness: So what you’re saying is that autism is being underdiagnosed?

V. Ly: Yes, particularly for women. Particularly for people of colour.

N. Simons (Chair): Thank you very much, Vivian. We really appreciate your insight and suggestion that we make additional efforts to contact and connect with children and youth who fall into the category that we’re looking at. So thank you very much for your input. It’s very much appreciated.

V. Ly: Thank you.

N. Simons (Chair): So we’ll take a little recess for a minute there.

The committee recessed from 9:44 a.m. to 9:45 a.m.

[N. Simons in the chair.]

N. Simons (Chair): Thank you very much, committee members. It’s a pleasure to welcome two individuals who have been listening to the previous testimony. We have before us Ashley and Dawn Seltenrich.

Welcome to the committee. You have the floor.

ASHLEY SELTENRICH

A. Seltenrich: Well, listening to some of the things, a lot of what I have written out is kind of…. I wish I had added more.

My name is Ashley. I’m from Dawson Creek. I’m here as two things. I am a community support worker for all ages of numerous disabilities for five years, and I also have two children, one a son who’s on the wait-list with the autism centre in Prince George. I noticed at 18 months that my son was non-verbal and also showing many autism tendencies.

As a parent, I did my research on the signs and symptoms but also used my work experience — an individual I support — as an indication as to what I was looking for, realizing that my son could possibly have a neurological disability. For other parents, many don’t know how to approach the process of how to get your child checked. With my job, I’m very lucky. I know the steps I need to do, where I need to go and who to talk to, as I see it all the time.

I knew we had to go talk to our doctor, but I did not know that a program coordinator from StrongStart could give a referral. She was lucky enough to give me a referral to the CDC for a speech therapist, which I am just now finding out…. It’s heartbreaking to find out my son might be behind 170 others today. That was a little….

T. Millner: Sorry.

A. Seltenrich: That’s okay. It’s good I know.

T. Millner: You know what? He’ll be prioritized because of that.

A. Seltenrich: I’m hoping, because that, right there, was heartbreaking to hear.

Interjection.

N. Simons (Chair): Can you tell us, Ashley, what Tana said just now? If it wasn’t recorded, it comes across as an interjection in the official record, so I’d like to know what was said.

A. Seltenrich: She gave the numbers out for the speech therapist wait-list in Dawson Creek’s child development centre. My son is on that wait-list. I did not realize how much of a wait-list that was. Today I just found out, and I’m heartbroken by it.

Parents need to know that we have other options besides doctors to go to for referrals to get this process done faster. The child development centre…. It’s very nice that we can go to it and get this done without a diagnosis right away, but with a diagnosis, it makes it a lot faster — and with better care and services for my son.

I also found out that a public health nurse could also do a referral. Unfortunately, a lot of our health care people do not know autism. They don’t know much about it. Our dental health public nurse only knows some basics of autism, but she wants to know more. She’s willing to learn. She wants to know more, because she wants to help parents point out, going: “Oh. Well, maybe something else is different. We could try here, or we could do a referral here.”

She was also willing to do a referral for me to the autism centre as well. So I had my doctor, I’ve had my program coordinator, and I’ve had my dental public health nurse all on my team. Then we went to a pediatrician, and he also was willing to do it as well. A lot of parents don’t know about that. I’ve talked to some parents, and they were very happy to hear that other people were willing to do this.

It’s just there’s no education. A lot of our public health people do not have the education on what autism is, so they don’t know what they’re looking for. They have no understanding of it.

For gaps and barriers, number one is wait-lists. Always will be. A year or two is really unreasonable. How we can get this approved and improve it is…. We should have these doctors who do the assessments come up every three months, because that’s how much of a wait-list there is. If they come up every three months, these children who are under the age of six can get the funding they need to get the services we need for them.

Again, I called the autism centre and found out what my son’s wait-list is, and it’s a year and a half. Again, that’s another heartbreaking thing to hear. My son is not talking. My son is not doing anything. I need help. I know only so much. I’m very thankful that I actually…. I’m using what I know and what I’ve learned as a support worker for my son. With that, we have gotten some steps, but I can’t do speech. I don’t know anything about speech. I’m not qualified for that, so I need someone.

[9:50 a.m.]

Travelling. Travelling to Prince George is four hours. That’s paying for gas. That’s food and hotels. I have another child. I might have to put my child in child care just so that I can go and take my other son to get the help he needs. That, right there, is a lot of money.

Also, my son Austin hates to travel. My son has autism. He’s freaking out, screaming in the car. That’s four hours of him screaming: “I want out. I don’t want to be in this car seat anymore. Why are we doing this?” He doesn’t understand. He can’t tell me that he’s upset. Right there, I have lots of meltdowns. Then trying to get him into the doctor’s office — “Hey, this is someone new” — again, meltdowns.

How is that a great process? I just took my son out of his home — never mind his home, out of his own town — and put him in a room with someone he doesn’t know. I’ve got to be there for two days just for this person to understand and see that my son even has autism. That’s a lot for parents.

Also, when this is happening, their anxiety is so high. It’s alarmingly high. You don’t know what’s going on with their nervous system. Of course, again, my son can’t talk. He won’t tell me what’s wrong. So if he’s upset, and it’s affecting his heart, he won’t tell me.

Trying to calm my son — that’s a battle, itself. The whole process, the cost thing, the behavioural issues…. My son is out of his element. That’s hard on a parent. And the transitioning time…. As a community support worker, we could do better. It’s not always feasible for us to do the transitioning time at a slow, processed pace. It’s unfeasible because we don’t have the time, we don’t have the funding, and the support workers don’t have the time as well. They have to go to each child.

I, myself, worked as a self-help. I had eight children, and I only had two hours at a time. There wasn’t much time to do transitioning time. Also, support workers don’t last — the burnout time. I was with those kids for a year. I had to move on. Actually, I had to. The company made me move on. That’s another issue too.

That’s my fear for my son: that he’s going to find this wonderful worker, and something could happen — move on. New worker. We’re back to square one. That’s my fear. I can’t work with my son because I will burn out, myself. I can’t do this professionally and personally. Would I love to? Yes. I just can’t.

I’m lucky enough that the CDC is trying to work on doing what I want them to do. That’s taking the slow time to introduce the new worker three months before we have to be in this new program. He’s aging out of the infant development program and has to go into OT, the occupational therapist. We’re hoping to slowly introduce her. That’s what I’m hoping we can do. That’s what every child needs. You can’t just go: “Okay. Bye-bye to this person that you finally….”

This lady who’s working with us — my son finally goes up and comes up to her now. He never has. He never did…. Now we find out that in three months, that’s gone. That means this person is going to take another eight months for my son to even get to there. If I find out, after the eight months, that they’ve got to switch, that’s heartbreaking. That means my son’s going back to square one, all over again.

It’s kind of hard that we’re not consistent. The transitioning time is not a slow process. It’s just: boom — there you go. Boom — there you go. Boom — there you go. We need that time to have the process, to be slowing down.

N. Simons (Chair): You have about one minute left, Ashley.

A. Seltenrich: Okay.

In closing, early intervention is a major key for children and youth with special needs. Every month that goes by without that early intervention slows down the learning development for this child, especially my son, who is just two years old. I want to get this done as fast as I can to get him the best support and the best services that they can provide for us.

[9:55 a.m.]

In many therapies for my son, to aid him and to help to talk — like a speech therapist or occupational therapist or a support worker — having the assessment now, instead of later, will help me advocate for my son to become successful his way. The wait-list of a year or two is just not good enough. We’ve got to do better.

N. Simons (Chair): I just want to thank you so much for giving us a perspective that is so valuable to us, as legislators. I hope you understand that one of the reasons we’re here is because we know that there are issues that need to be dealt with. As MLAs, we hear it from people who have had their own little battles with various agencies and organizations.

Thank you very much for giving us your particular insight. It’s very valuable to us. I’ll see if my colleagues have any questions.

L. Throness: Has your son been diagnosed?

A. Seltenrich: My son has not actually been assessed or diagnosed. We’re on the wait-list. The pediatrician, my family doctor, the program coordinator at StrongStart and the people at the CDC also all think my son has autism and he has the tendencies.

L. Throness: Would it matter whether he was diagnosed or not, if he got services?

A. Seltenrich: Yes, because I also know there are a few private speech therapists in Dawson Creek. I need to fund for that to pay for that. My husband and I don’t make as much money because we are paying for things already as it is. Having the assessment done would help because it just pays for a lot of stuff, not to mention with equipment. My son loves the sensory swing. It helps calm him. It not only pays for services, it pays for equipment.

R. Leonard: Thank you very much for your presentation. I know how difficult it is to put together something succinctly, within a certain time frame, and you did a fabulous job.

A. Seltenrich: Thank you. First time.

R. Leonard: Very compelling because you touched on the issues as well as sharing a very personal story. I really appreciate that.

I think the question that Laurie asked…. We work within a system right now that says you need the diagnosis to get the help. A lot of kids fall through the cracks, and the assessments and wait-lists are all part of it. There’s talk about sort of flipping the system on its head so that we’re looking at functions of the children and meeting the needs of children where they’re at, rather than pigeonholing them.

I’m just wondering. You work in this field. Do you find that parents generally are open to the diagnosis? Because that’s one of the challenges.

A. Seltenrich: Yes. Once they find out that they can get assessed and there’s autism funding that could help out with all sorts of different things that could be paid for — equipment or other service providers — a lot of parents are very open to it.

N. Simons (Chair): Once again…. Dawn, you’re a support person in this.

D. Seltenrich: I’m the grandmother.

N. Simons (Chair): The grandma. Well, thank you for being here too. It does represent to us that this is a family and community thing. Really appreciate you being here as well.

Thank you very much, Ashley.

Moving on, we have our next witness, Jaandi Roemer.

Welcome to the committee, and thank you for being here.

JAANDI ROEMER

J. Roemer: Thank you. I did forward my letter to you. I apologize. I’m a very fast talker, so tell me if I need to slow down.

Basically, my name is Jaandi Roemer. I am a self-diag­nosed Aspienwoman through the help of a therapist who I have seen over the last ten years.

I have two children. One is seven. Well, actually, he’s six. He tells me he’s seven all the time. My daughter is eight. My son is diagnosed with autism, global development delay, oppositional defiant disorder and will be tested for ADHD and all the other secondaries that can show once they get a little bit older in age.

My daughter is more complex. She was the perfect baby, the perfect toddler, and then once she hit school, all of her problems started to present. She is not diagnosed. I will read that in my letter and explain a little bit about that.

For myself, I am a graduate of the child development centre. Both my children attended most of their lives. I am also director of the North Peace division of Girls Club, which falls under AutismBC, so I have a lot of families in our community with daughters who have autism and other neurological disorders. I am also the founder of the North Peace Family SuperPark, which is an all-inclusive indoor playground that we’ve established here in our town which supports children of all physical and mental abilities as well.

[10:00 a.m.]

I have quite a bit of background — most of it self-educated through my children but also through our wonderful community — about autism and other neurological disorders. I am standing before you, not only as a mom of a child on the ASD but also as one waiting for private assessment. I’m also acting as an advocate in my community for families such as mine.

Our community has an alarming number of children that are diagnosed with ASD and FASD. Even more alarming is the number of children and families that have slipped through the cracks of the system due to extreme wait times, poor assessments and missed diagnoses, specifically females, based on incomplete information and outdated assessment procedures.

It is my understanding, through research, that ASD is diagnosed four times more often in males than in females. This is because ASD symptoms present differently in these populations. Many girls go unrecognized or are misdiagnosed due to various factors, such as subtler manifestation of social and communication difficulties.

In order for females to be diagnosed with ASD, their symptoms must be more severe or prominent. In order for families to be taken seriously, it seems that girls must present with more severe behavioural problems that result from their undiagnosed disorder. Another reason females may not receive the ASD diagnosis is that girls tend to have a greater ability to hide or camouflage their symptoms. We call it masking or mirroring.

Canada is behind many other countries, such as Great Britain, Australia and even the U.S., in assessing girls differently than boys. It shows in the number of girls who early in life get diagnosed with all the secondary disorders that tend to accompany ASD, but who do not receive the ASD diagnosis until later in life — when it’s too late, in my opinion. My daughter is one of these girls.

I’m probably going to get emotional. We just had a major moment this morning, so I’m fresh.

N. Simons (Chair): You’re all right. You’re in safe company.

J. Roemer: She’s one of the girls who has fallen under the statistic of wrongly diagnosed children. She has been through many assessments, and every time, the doctors don’t take our family struggles, and what I tell them about her true self, into consideration. I have offered videos, journals and my own research with factual examples of how and why she falls under the category of an Aspien girl. Because she doesn’t meet the criteria for classic autism testing, she has been given six different disorders that are mostly behavioural-based. Ironically, her brother who presents with the exact difficulties as his sister, was diagnosed with ASD and has less secondary diagnoses. It really makes no sense.

My daughter, Savana, has been formally diagnosed with neurodevelopmental disorder, ADHD combined forms, sleep disorder, developmental coordination disorder, generalized anxiety disorder and a specific learning disorder with impairment in mathematics. She has also been deemed at high risk for personality disorder and mood disorder and has traits of oppositional defiance and ASD. That’s in her diagnosis: she has “traits of ASD.” However, they feel that it’s not enough to actually give her that diagnosis.

I am standing before you — well, sitting — asking you to take female autism more seriously when doing assessments. See it for all that it is — the camouflaging and masking, the many different ways that it presents in girls. These children or adults do not fit in a classic autism criteria–type testing. They don’t hand-flap. They are engaging and extremely bright. They are social. They make eye contact and everything else that they say people with autism don’t do.

Their extremely amazing way of masking, mirroring and camouflaging actually makes it so that they ultimately lose their selves and eventually suffer from identity issues and emotional breakdowns. At the end of the day, it’s hard to maintain being or acting like someone you are not. I speak from experience. I myself am a self-diagnosed Aspien woman. Through many, many years of therapy and research, my psychologist was able to help me understand the trauma my childhood brought me due to lack of education in mental health at the time.

[10:05 a.m.]

Basically, back when my parents were raising children, you were either a bad child or you were a bad parent. I’ve had to do a lot of self-help and learn how to correct my behaviours on my own. It is my fear that my daughter will go through the same process and have a difficult childhood due to the lack of funding and resources available to her because of her misdiagnosis.

I would also like to bring up the wait-list issue. Waiting two years for an assessment for any child can mean the difference between having early intervention and having to repair damage due to waiting for resources that would significantly affect the child’s life and ability to function. The stress and turmoil the family goes through in this waiting period are horrendous. I know, personally, too many families that have been torn apart due to the stress and emotional damage of having no support, no resources and no light at the end of the tunnel.

Our province needs a better system of testing, bringing in doctors needed to do this testing and applying education and assessments that aren’t outdated. We are not doing our families or their children any service by misdiagnosing or underdiagnosing them and then putting them on medications that do not help the child — which will actually just hide their symptoms under sedatives, antidepressants and stimulants.

It’s only going to cost the government more money in the long run as children grow into adults and become a hindrance to the judicial system or become dependent on the government because they simply cannot function on the normal level that society requires them to do. If we get them the support and resources at an early age, it can literally change their lives and allow them to be their best selves.

Thank you for hearing me on this matter. I have so much more I could say, but I know time is limited. Please take my words and the words of everyone else who is speaking up into consideration going forward. Timely and more open-minded testing is absolutely crucial to our families’ success. I just wanted to bring up, with the difference in testing, I’ve been through many classic autism…. Basically, what they say is: “They can look; they don’t hand-flap. They make eye contact; they’re smiling. She’s extremely funny; she’s so bright. She’s not autistic.”

If you go through the diagnosis process or screening of an Aspien child, it’s completely different. They don’t even look for those symptoms. It’s all based on their social appropriateness, their ability to filter, their ability to handle a situation being in a formal or a group atmosphere. How do they act? How do they act afterwards? What kind of things are they going through afterwards?

I’ve done a lot of these testings from different websites — Autism B.C…. There’s a testing in Britain, in Australia. I did print a couple of my test scores out for you just to see.

Northern Health has said: “She shows traits of autism but not enough to diagnose.” However, now we’re going through the private…. I’m paying $3,000 to go private, because my screening…. He agrees with me that you can’t just show traits of and not look into that further. What are those traits? On one of my testings, I scored a 40. On that, if it’s 34 and up, autism is likely. So I did another one, just to see. I scored 19. Zero to 14 is low risk; 15 and higher is high risk.

I’m doing these prescreening things — which we’re told as parents to do, right? “Do your research. Look into it. Get familiarized with why you think your child has autism or any other disorder.” We bring this to our assessment — our videos, our journals and our life story of why our life is so hard. Then we’re told: “No, sorry. I know she shows traits of, but we’re going to give her seven different disorders.” We’re going to heavily medicate this eight-year-old, 52-pound little girl and then expect her to function properly in life.

What it’s doing: it makes her violently ill every morning. She’s rejecting school, because she doesn’t feel well, it’s not helping with her anxieties, and it’s not helping with her social appropriateness. It’s not teaching her how to be a friend, how to be a proper student, how to follow rules. It’s not helping her understand: “Why is that person is looking at me like that? I don’t understand. What did I say that’s wrong? What I said was truth.”

[10:10 a.m.]

I speak from experience. I’m 40 years old, almost 41. I barely had friends growing up. My mom, for lack of better words, called me a little B-word from the time I was five years old, because she didn’t understand. I didn’t follow the rules properly. I spoke my truth, and I stood behind it, and I fought for the truth, but it wasn’t appropriate, and I didn’t understand that.

Going through high school, I spoke my truth. I didn’t understand that it wasn’t appropriate and that I was supposed to recognize: “This is an adult. Even though that’s the truth, you shouldn’t say that.”

Even now, I have to work really hard to filter what I say, to gather my thoughts and to scan the room and see what kind of people I’m going to be talking to. What kind of behaviour do I need to have? How do I need to present myself? How will they like me?

This is what they go through, but the classic autism screening doesn’t assess for those things. When we offer journals, when we offer videos, and we’re told no, how is that helping the family? The assessors see our child for…. Well, in the one assessment, he saw her for 12 minutes — 12 minutes. He summed up her life in 12 minutes. My husband and I were on the verge of divorce because we couldn’t handle our children, and he assessed her in 12 minutes.

The other one was a three-day. He spent 30 minutes with her. The other one spent another 30 minutes — again, summed up her life in that short amount of time. They didn’t even look at a 20-minute video of a complete meltdown, where she hated her life, or another video, where she confessed wanting to kill herself because she didn’t know how to be a proper girl and nobody liked her. Eight years old — and she wants to kill herself. But they wouldn’t watch that video either.

I’m here as an advocate on myself, but other families go through the exact same thing. Hopefully, they’re as strong as I am, because I will not let my daughter fall through the cracks. I will fight for her until the bitter end so that she can grow up healthy, mentally, physically and she can live the best life possible. But not everybody is as strong as me. Not everybody is an advocate. Those are the people that really fall through the cracks, so I’m fighting more for those people.

N. Simons (Chair): That’s pretty clear in your words to us today. We thank you very much for them, because when we hear testimony here, we realize that not everyone is suited to come and stand before our standing committee — while we’re all sitting down — and talk about these issues. Thank you for your willingness to be so open. It’s helpful to us. Hopefully, it’ll help us formulate some really good recommendations to government.

We’re kind of out of time, but if anyone has a quick question…. Any quick questions?

R. Glumac: I have a quick question, just to help me understand. What would change if you had the diagnosis, other than just the funding? The challenges that she has are still identified. I’m just wondering what would be different.

J. Roemer: Without the diagnosis, she’s seen as a behavioural child. She’s seen as a bad girl — a girl that doesn’t follow rules and a girl that should know better. Within autism, it’s given: “Oh, she has autism.” All of a sudden, the behaviour part of it is taken out, and the disorder part of it is brought in. Even with my own husband, he sees my daughter as one way, but as I soon as I mention it, he’s like: “Oh, right. She’s got a mental disorder. She doesn’t mean to be that way.”

The funding definitely helps. It’s kind of backwards, in my opinion. They should get more as a child, because the resources are now out of pocket and not through the government.

Also, the support at school — there’s a huge difference between a child who has an autism diagnosis and a child who has an ADHD, FASD, Down syndrome, Tourette’s…. With any of those, they don’t get near the amount of EA support or school support as a child with the autism diagnosis.

N. Simons (Chair): That’s really important for us to know, because we know that there are certain attitudes that come with labels, that come with diagnoses. You did mention oppositional defiance. Well, that’s another place where kids are left to be just behavioural.

Thank you so much, again, Jaandi.

J. Roemer: Thank you for giving us this opportunity.

N. Simons (Chair): Okay. Great.

Committee members, we have next, on our agenda, Dawson Creek support group for parents of children with special needs — DeAnna Wry.

Welcome to the committee, and thank you for being here.

[10:15 a.m.]

DAWSON CREEK SUPPORT GROUP FOR
PARENTS OF CHILDREN
WITH SPECIAL NEEDS

D. Wry: Thank you for allowing us the opportunity to come and speak in our area. It’s something that we don’t…. There’s a disconnect between the Lower Mainland and southern B.C. and northern B.C. So thank you for that.

N. Simons (Chair): Just so you know, we’re not all Lower Mainland here. I’m upper mainland.

D. Wry: Upper mainland. See, I said “southern B.C.” Southern B.C. encompasses, I think, south of Kamloops.

N. Simons (Chair): Point taken.

D. Wry: I am a resident of Dawson Creek. I have been for about 13 years. I run the Dawson Creek Support Group for Parents of Children with Special Needs. We have about 148 members. We meet when we can. I’m grateful that one of our members was able to be here today — Ashley, over there.

I am also a neurodiverse woman, wife and mother of two neurodiverse youth, ages 12 and 13. The main diagnoses in our family include ADHD, autism, impulse-control disorder, anxiety disorders, obsessive-compulsive disorder, dyslexia, dyscalculia, a rare chromosomal duplication, a rare neurological disease and a rare benign metabolic disease.

You would think with all of those diagnoses that we would’ve had services for our children from a very young age. Sadly, you would be wrong. Unfortunately, not one of the multiple health professionals in our lives from the time our children were infants noticed or pointed out the increasingly obvious traits of complex neurodiversities. Those health professionals included our family doctor, many ER doctors, three pediatricians, a urology team and several health nurses.

The only service our children received prior to age six and seven was speech therapy. The transition from CDC to public school did not allow for much communication between the two, so there was a delay in continuing those speech services.

I have it referred to as child A and child B for my oldest and my youngest. I tried to find a way that was less personal.

Child A was dealing with bullying, hyperactivity, distractibility, inability to learn how to read and more. With the challenges child A was facing in school and no diagnoses, we had to advocate for the school to provide an individualized education plan. The school provided an IEP for child A with very limited supports and no designation funding application.

Child A’s first neurodiverse diagnosis came at age eight, several months after meeting with and being assessed by the fourth pediatrician. Prior to making a diagnosis, said pediatrician made written requests that the school district do further psych testing, including a psych-ed evaluation and a BASC. With advocating from my husband and me, these were completed within three months. This is not the norm.

These assessments being completed in a timely manner helped child A receive a proper diagnosis of ADHD, generalized anxiety disorder and an unspecified learning disability, but unfortunately, ADHD does not qualify for child and youth special needs services or specialized funding in or outside of school.

Around the same time, we were advised to seek out services in our community, specifically via MCFD. We self-referred to MCFD CYMH and were provided support services via their subcontractor in our area — that is, INS. INS provided weekly support sessions for both of our children — friendship skills, groups and parenting tools. This also provided a fresh set of eyes on our children and their needs, which helped us as parents to realize that we needed to advocate and push for further assessment.

Child B’s challenges were much more subtle than child A’s. They were seen by the school as behavioural issues related to home life. They were labelled as typical girl drama and copying child A’s behaviours.

While we were on the wait-list for the fourth pediatrician for child B, our family doctor determined to send in a referral to BCAAN, the British Columbia Autism Assessment Network. A referral was sent and approximately eight months later, child B had an autism assessment, referred to by the BCAAN assessor as a stand-alone ADOS assessment.

Unfortunately, the experience with BCAAN was not a positive one. We were not given any direction on how to prepare for the assessment, aside from a packet of questionnaires for us and the school to complete and an over-the-phone interview with the team.

The experience with the BCAAN assessor was a negative one from the get-go. They had been reviewing the wrong child’s files prior to our appointment, as when they arrived at the waiting area, they called out the wrong name, reading from the file in their hands.

From the beginning of the appointment, it was very clear that they were only assessing for classic autism, not autism in a female. It was also clear they would be heavily relying on the school’s feedback, which was limited, as our child’s issues in school had been brushed off, and what we now know is that teacher who completed the forms did not believe our child was autistic and made that very clear on the questionnaires, adding additional notes about how normal child B was.

At the beginning of the parent part, they commented that we should have been having a CDBC, or complex development and behaviour check assessment, the other assessment arm of BCAAN. The assessor missed some very big red flags that our child exhibited in that 45-minute appointment. At the time, we did not know that they were autistic traits common of females on the spectrum.

During the assessment, they informed us that if we could not answer a question immediately, our child was not autistic. They refused to offer examples to jog our memories for what the question meant or to help us recall details of early development and toddler years, as child B was eight at this point. The assessor was also dismissive of any answers they determined were not autism-related.

[10:20 a.m.]

During the final portion of the parent meeting, they told us that there was no way our child could be autistic, as they were doing well academically; were, for the most part, behaving in school; and had children attend their birthday parties each year. They said it also couldn’t be ADHD because no one with ADHD could behave in school and get good grades.

They also told us not to bother with seeing anyone else as we would be told the same thing: that our child’s issues were all behavioural and not autism or ADHD. This assessor’s lack of knowledge on assessing autism and ADHD in females delayed a proper diagnosis and access to badly-needed CYSN services and autism funding.

Shortly after this assessment, child B was seen by the fourth pediatrician, who diagnosed ADHD and generalized anxiety disorder. The pediatrician read that BCAAN report and determined to send in a referral for a CDBC assessment, as suggested by the BCAAN assessor. We were on the wait-list for several months and finally seen by a developmental pediatrician who spent 45 minutes with child B. During that time, they determined child B did not qualify for CDBC, citing that our child could make two of three wishes, despite those wishes being very literal things not common of a child that age.

It is our belief that the CDBC assessor was, at the time, lacking in experience and knowledge of autism in females. Recently I received an update from another parent of an autistic child who had seen the same assessor for their child’s assessment and diagnosis. I was surprised to hear they are now knowledgable in autism in females and how differently it often presents than autism in males. Unfortunately, that assessor’s knowledge came too late to provide our child with an assessment and proper diagnosis. This again delayed CYSN services and funding for supports.

Child A’s school experience in grade 3 was a negative one, and it was impacting their mental health. Due to that year’s government and teacher union contract negotiation issues, communication between teacher admin and us was extremely limited. We requested further supports, as in an EA in that classroom. This request was denied by the school admin, citing that our child was self-regulating enough, as in removing themselves from the classroom when anxious or overwhelmed to wander the halls or sit in a quiet room.

Many factors led to our child being denied services, and their mental health suffered greatly. We made the decision to remove child A from bricks-and-mortar public school and enrolled in a distance learning for grade 4. The public DL we enrolled with had more than enough documentation of current diagnoses and support services to apply for designation funding for our child. At the time, MCFD CYMH had a neuropsychologist on contract who, with INS’s recommendations, was able to provide child A with a full neuropsych evaluation. This diagnosed dyslexia and red flagged autism, OCD and ODD.

We were still receiving CYMH supports via INS, but those services were abruptly ended without even a phone call to tell us. We later found out this was due to a miscommunication on INS’s end and their lack of staff for the large client volume they serve.

Sometime later, we had renewed a referral to CYMH, and they again offered INS services via a friendship skills group for child B. They offered friendship skills groups over the summer months, but unfortunately, we were away that summer for some of the sessions. Child B also refused to attend due to not liking several of the peers in that group, so we were late for the sessions often, due to refusal to go. Yet, at the end, INS told CYMH that it went great. So CYMH services were dropped again. This lack of communication has deterred us from ever seeking out INS services via MCFD, CYSN or CYMH again.

Upon our pediatrician’s recommendations, and with the negative experience of child B’s assessment still fresh in our minds, we determined to wait for a BCAAN referral for child A. Because we were also homeschooling, child A’s anxiety had become considerably less. Being home all day, we were able to see everything the school had failed to report to us.

With designation funding, we were able to access a full speech assessment with an SLP and an occupational therapist assessment. The SLP assessment diagnosed a moderate speech delay, which was missed by the previous assessment done by child A’s former public school. The OT determined our child had sensory processing disorder and made recommendations for occupational therapy. With the SLP and OT assessments, along with our feedback of what we were seeing at home, our pediatrician determined it was time to send in a BCAAN referral for autism assessment.

We were on the wait-list for approximately six months. The BCAAN team we saw this time was warm and welcoming. We came prepared this time, having been through a BCAAN assessment before. We had time. We had some idea of what to expect, and we refreshed our memories on our child’s early years.

Fortunately, child A was having a bad day. They refused to participate unless it was about their interests, quite literally putting their hood up over their face for 45 minutes of that appointment. We were told afterwards that we would need to come back for another appointment to have the child portion of the assessment redone, but we were able to complete the parent portion that day.

The BCAAN assessor was very helpful at jogging our memories when asking questions regarding early development and toddler years, as at this point child A was nearly 11 years old. They also appreciated the photo album we brought of our child’s quirks that we had noticed from age six months to four years.

[10:25 a.m.]

Shortly before the BCAAN referral, we had also self-referred child A to CYMH for cognitive behavioural therapy. Our child made no progress with weekly sessions over several months, then had great difficulty being willing to attend. Genetic testing results that we had received around that time determined that our children both have a rare chromosomal duplication known to cause autism.

Two months later we returned for a second appointment. The assessor was the same one as we saw with child B several years prior. The hour-long appointment was a completely different experience. They were helpful in looking for autism due to the genetic testing results.

Three months later we returned for a diagnosis appointment where child A was given a diagnosis of autism spectrum disorder. We informed MCFD at CYMH, and their services were immediately withdrawn as they do not help autistic children or their families. That’s what we were told.

We started the process of receiving CYSN services, specifically their life skills group via the CDC and group respite also via the CDC, as well as autism funding. Unfortunately, we quickly discovered how limited services are in our area to use that autism funding. We were not able to spend any of that autism funding in the first two years because of a lack of service providers and because we lacked a behavioral consultant because there is not one in Dawson Creek. This was a huge barrier to accessing supports.

Our CYSN social worker recommended a neuropsychiatrist at B.C. Children’s who does telehealth for our area. We got a referral for both children and were only on the wait-list for four to five months. The doctor was able to assess our children further and diagnosed OCD tendencies and several anxiety disorders and provided us with a treatment plan. They also recommended trying cognitive behavioral therapy with child B. Child B was really struggling with anxiety and social skills, so we again self-referred to CYMH for CBT.

Child B did not click with the clinician, unfortunately. Appointments were cancelled frequently, and availability was very limited. We finally requested a new clinician but were told we would need to restart the entire referral process, and it was a year wait for services. We were incredibly frustrated at this point and had been researching other options for assessment.

Several parents of autistic children recommended a private psychology clinic in the Lower Mainland. We made a plan to use our tax-return funds to pay for a combination of ASD and psych-ed assessment, which would cost us approximately $3,600, plus travel and accommodations.

The private assessment process was very different than we had experienced with BCAAN. The assessor was working to ensure our child was properly assessed. Child B spent six or so hours with the assessor over two days. The parent portion was almost the same length of time. We also came prepared with a photo album and pages of notes of our child’s quirks, early development, behaviours and concerns.

We provided additional feedback and clarification over the next few months. Each of child B’s former teachers still at the school provided written feedback, as did two community members close to our child and our family psychologist. It was a seven-month process, and at the age of 12, child B received a diagnosis of autism and dyscalculia, which is a math learning disability.

There is so much more to our family’s story, but with time being so short, I wanted to sum up as much as was possible and include what is most relevant to CYSN services. My story is not unique. Parents in the support group that I run have shared so many similar stories. I wanted to share mine, because it’s mine, and I do not have permission to be sharing theirs. I wanted to, so that’s mine.

N. Simons (Chair): Well, DeAnna, thank you very much. It’s your story, but I think parents listening in will see similarities and will be glad that your voice is in this committee room. I think they thank you, as well as we do.

I wonder if we have any questions here, my colleagues. I think you really just summarized the parental experience. There are obviously a lot of questions about how they could miss this diagnosis. How come you had to wait this long?

Ultimately, our job is to try and figure out ways that the system can be improved. I’m hoping that you know that we’ve heard you. We’ve had it all written down and transcribed. I appreciate it very much. If you want to, mention to the 148 members of your group that we will be accepting written submissions.

D. Wry: I have shared it multiple times.

N. Simons (Chair): They don’t have to be well-crafted. They can be sentences put together. Really, we will work through them.

D. Wry: I know I’ve been collecting some feedback. I will be putting a written submission in, as well, because there is just so much. Trying to squeeze it all in to ten minutes is not a very easy thing to do.

N. Simons (Chair): I know, and it’s sometimes a little uncomfortable. I don’t feel like interrupting people when they’re talking about something that’s so obviously core to life.

[10:30 a.m.]

D. Wry: I think most of us parents, like Jaandi was talking about, are also dealing with our own neurodiversity. As Jaandi spoke about, most of us grew up undiagnosed, which is part of that delay in there that I did not mention.

Yes, our health professionals didn’t pick up anything, but we as parents didn’t realize what we were seeing wasn’t typical because I grew up undiagnosed. I was not diagnosed until I was 30, and that’s a really big thing. Again, I grew up as the hyper, wild kid that was just quiet and dramatic and sat at the back of the classroom and said nothing but was an A student who did not get in trouble.

N. Simons (Chair): Just one little quick comment. I ask for your observation. The misdiagnosis or the failure to diag­nose the difference between the boys and the girls — is it a societal thing? Is it an expectation of certain types of behaviour that are acceptable, like gender-based behaviours?

D. Wry: Yes. That’s what we were told. We were told that when she screamed at other students because they brushed against her while on the carpet time in grade 1, that was typical of girls her age to do. We were told…. She tricked her kindergarten teacher into putting her on the bus on the first day of school, because I was five minutes late for school and because she was going to so-and-so’s farm. That teacher had no idea she was being lied to and had no idea that that wasn’t just within the realm of typical. The list could go on and on.

It took a lot of teachers actually making some observations — some making the opposite observation, which only pushed me harder, going: “No. I know what I’m seeing. I know what I’m hearing. I know that what you’re seeing is my child hiding themselves.” They are masking themselves, because they know if they talk, if they speak up, if they do what they do at home or in the community, they will be judged for it and told: “Well, you shouldn’t do that. You’re just a bad kid. You’re just being dramatic.”

There’s that expectation that females are more emotional. We’re more dramatic. We’re more prone to things that boys are not. Boys are those ones that are the swinging-off-light-fixtures, climbing-off-desks type of hyper. That’s not my daughter in school. That’s not.

N. Simons (Chair): Well said. Thank you for being the support here to your husband there in the back row. Very appreciative for your presence here. Thank you.

Committee members, we have Victor Banman, who is about to present. He has sat patiently through the testimony of other witnesses.

We welcome you to the committee and look forward to hearing your perspective.

VICTOR BANMAN

V. Banman: Thank you. I’m not sure how this is going to go. I don’t speak well in public.

N. Simons (Chair): We’ll ask questions if you want us to interrupt.

V. Banman: Okay. Rick, you asked before about what the diagnosis does.

It really helps out a lot. My grandson, now our son, has got FASD, ODD, ADHD and PTSD. He’s got a lot of stuff. Each and every kid that would have the same diagnosis is so much different to treat, so having the diagnosis helps a lot and opens the door for many things: speech therapy, which we can’t get; a teacher’s aide, which is…. He’s half days. He’s actually in school less than two hours a day now because he’s so elevated. There are so many things that help, but there are so many things that we’re getting the door closed on that aren’t working for us.

I feel for all these people behind me, because there are a lot of similarities on mental health issues. Basically, that’s the basis of it, but there are so many things. There are so many people out there that are frustrated and won’t even bother showing up here because they might consider it a waste of time. I got my wife to write this down here so I wouldn’t screw it up too bad.

We’re provided with a key worker. She’s really been fan­tastic. We’ve been recommended for speech therapy. We’ve talked to Keith MacGillivray a few times to push those buttons, and he’s not returning our call. We have, apparently, very limited resources on speech therapists here.

Occupational therapy service. There are so many things that we do have, but it’s nowhere close enough because there’s always the door that closes. You said before: the $2.6 billion that she’s working with. It should be, like, $3.6 billion or whatever those numbers were.

Now, if you open the door, not just to autism but FASD…. That’s what I’m trying to get across here. There are so many things that are similar. The therapy room, where they swing on stuff — those types of things — is so beneficial, but our little guy doesn’t get a lot of that stuff because he doesn’t have the autistic branch of this branding — if you want to call it, whatever. The FASD is a big deal.

[10:35 a.m.]

Disneyland. We could only do half days, because it was so elevated. There’s lots going on, and that’s what a classroom is like to him too. There’s so much going on. Hence, he got kicked out. He’s there less than two hours a day. This is his second time in grade 1. We’re working on getting him social skills. The academic part we’re working on at home and stuff, but our priority is to get him social skills so he’s accepted. We’re having battles.

Speech therapy — I mentioned that. The CDBC was a good team. That was three days of lots going on there. We’ve had some good reviews and some bad reviews on some of those things. We were lucky to have good. That was a long three days.

I’ve mentioned about the school. I would like to see supports for the FASD and basically mental health, I think it breaks down to. These little people and our little guy are awesome. He’s a little shit — excuse my English — and he’s awesome. Our daughter died. We adopted him. Without him, I’m sure I’d be a mess.

That’s all I’ve got to say.

Questions?

N. Simons (Chair): Good for you.

Victor, thank you for giving your grandpa’s perspective. I think that it’s important for our committee to recognize that oftentimes extended family are called in. Our grandparents and aunties and uncles are often much more involved. It’s heavy on the community and on the family. I’m really, really appreciative of your presence here and your wife’s notes. Obviously, she covered off a few things for you there.

We’ve been interested in hearing more about FASD. In the sector, I guess, there are different conditions that are talked about more than others. I think, as a former social worker, I know that FASD was something parents weren’t anxious to get diagnosed. It wasn’t something the community was supportive around. There was always a sense of stigma attached to it. I’m just wondering. From your perspective, where does that stigma play a role in the ability to access help?

V. Banman: It is what it is. He’s got FASD and other stuff. But my job, as I see it, is to be a great husband, father and grandfather. Preston is now our son, so we spend a lot of time with him. While he was in full days at school, we would be at school three times a week, maybe more. Sometimes we’d be able to talk him down on the telephone. But my wife would go, or I would go. She is watching him right now, because he only starts school at 12:30.

I’m not even sure what the question was.

N. Simons (Chair): No, I wasn’t sure if there was a question. I’ll look around for my committee colleagues.

R. Leonard: Thank you so very much for coming up and sharing your story with us. Every time we hear another story, we’re hearing just another element of where the system is failing people.

For me, this whole issue of pigeonholing people and diagnosing them and that being the lead for how your life unfolds just doesn’t seem…. I mean, the need for an assessment is what gives you the right kind of tools to be able to help your child grow up. But at the same time, it shouldn’t also be, as you’ve mentioned, the barriers, the closed doors. It should be more child-centred. You’ve definitely given us a really good example of that, and I appreciate it.

V. Banman: We are seriously considering Alberta, be­cause FASD and autism are on the same page. In B.C., there are a lot of doors closed, whereas autism helps. Don’t get me wrong, there are going to be doors closed no matter where we go. That’s a fact of life. I just want to make him succeed in life. We’ve got some really good people on his team.

I look around. There are a lot of people here, and hopefully, you have some influence on dealing with this. So it’s not a little thing. It’s an ounce of prevention that’s worth pounds of cure. If we can beat it up in front of the game and get in front of things and proper training, proper health, we can do good.

N. Simons (Chair): Well said, Victor.

[10:40 a.m.]

L. Throness: I wanted to ask about self-awareness. I especially noticed this with Jaandi and with DeAnna, that they were very self-aware. They are very self-inquiring and able to see their own behaviours and therefore, in some way, to correct those behaviours and change themselves.

To what extent is your son aware of his own condition of FASD and other things? To what extent are children, in general, self-aware of their own issues? Or is it like they’re not aware?

V. Banman: Oh, he’s totally aware. He’s got a teacher’s aide. That’s special. He’s the only one in his class with a teacher’s aide. He can be…. I’m not going to say violent but close to being…. When he gets elevated, he’s the guy that’ll flip the table over and grab crayons. The table is his defence, and crayons are his weapons.

There’s fight, flight or freeze. The psychologist says that fight is good, because he can see his way out of a situation. He’s trying to work his way around whatever. The school doesn’t think that’s so good, because it’s a problem.

Say the question again. I’m sorry.

L. Throness: It would seem to me that self-awareness gives you a degree of self-control.

V. Banman: He’s aware. We’ve got some great stuff from Dr. Rosenhauer. She’s the psychologist. She’s very good.

My brain is different than your brain. Well, everybody’s brain is different, but it goes down, and it breaks down many things. My wife is much more knowledgable, and I wish she was here to back me up, but there are so many things we’ve read.

I’ve learnt so much in the last two years. By no means am I qualified, but I’ve learnt a lot. There are so many things. Like, we live here. He lives here when things get elevated, so that’s your elevated brain. For him to function in an elevated situation is not possible. We’ve got to train him to get there.

N. Simons (Chair): Thank you. We were just having a little side thing about our understanding of FASD and how, as a society and as legislators, we’re going to look for opportunities to learn more and more about that. So I just want to….

Oh, Michelle. Sorry, Deputy Chair. I forget her sometimes.

M. Stilwell (Deputy Chair): That’s okay.

I really just wanted to extend my thanks to all of you for being here. As a parent with a child with autism, with the lived experience, I heard very many stories, both yesterday and today. There are a lot of correlations and experiences that we’ve all gone through, as the system isn’t perfect, as we try and put the tools in the tool boxes to help our children, our grandchildren or our child — as you have now — to live their best life and reach their full potential.

I’m just very grateful to you for advocating, for using your voices to help educate us. Everyone here comes from a different region and a different background. Not everybody understands the acronyms. Not everybody understands the psychology behind it. Hopefully, what we’ve heard today will bring us that guidance to make the system better. It may not impact the lives of your children or yourselves, but it will help children down the road.

That is the goal — to make the system better so that other people don’t have to live the way that you’ve experienced it. So thank you very much.

N. Simons (Chair): Thank you very much, Victor. If there are no further comments from members of the gallery, we have a motion to adjourn.

Yeah, Jaandi, come back up and speak into the microphone.

This is Jaandi, from earlier.

JAANDI ROEMER

J. Roemer: I just wanted to address your awareness — somebody who is aware of how they are compared to how they’re not.

Myself, I am very aware. However, growing up, I was not aware at all. It wasn’t until I battled with sex addiction, with food addiction, with getting into the wrong groups and getting into the wrong crowds…. Ultimately, I was 25 years old, and my mom begged me to leave Vancouver, because if I didn’t, she was afraid I would die. I chose the wrong crowds. I chose people who liked me based on my actions, and my actions were based on what I thought I had to do to make them like me.

[10:45 a.m.]

It was moving up here that made me aware and really see myself for what I was doing to my life and what my life was like growing up — then, like I said, getting a psychologist to help me figure it all out. Unfortunately, my mom has passed away now. I can’t repair my relationship with her, but I understand her a whole lot more.

My daughter is very aware of her behaviours. I’m able to talk to her about her behaviours. I’m able to tell her: “This is what’s going on. This is why it’s not appropriate. This is what you can do to make that better.”

My son is very unaware, and he doesn’t care. He’s like: “Yeah, I threw the fork at you. And what?” For him, I have to apologize more in society and say: “I’m sorry. He’s autistic. This is what’s going on.” Then they’re like: “Oh, oh yeah, yeah, yeah. Okay, I understand.”

My daughter…. I say that. I can’t say she’s autistic, even though I know in my heart of hearts that she is. I can’t say it because she’s not diagnosed. Therefore, she is a girl who is acting up, super emotional, super melodramatic — mountains out of molehills. As a parent, it’s harder for me to make her aware, because she’s being told: “No, you’re just a bad girl.”

The awareness on a government level, on an adult level, is really important. Because the more people that see FASD as not “I was a junkie and I drank too much….” That’s in my daughter’s diagnosis too — possible FASD but not enough to diagnose.

Why? Because I went to Mexico, and five days into my trip, I found out I was pregnant. So they put that in there — “She drank like a fish” — but didn’t put when I stopped, just: “When she found out she was pregnant, she stopped.” But when did I find out I was pregnant? That’s in there now. That’s going to be in my daughter’s…. It’s for the rest of her life — that her mom drank and that’s why she is the way she is, right?

The awareness is that FASD is not because people make bad choices. Maybe they didn’t know. So on a government level, to show that and to say that autism is very much like ADHD and is very much like FASD, and they all pull from the same thing….

When you get that assessment, or you get that diagnosis or not, to be treated or have the funding or have the resources available based on the child’s needs and not on the label could mean the difference between somebody at 40 years old repairing 40 years of damage or a child at six years old growing up and having the tools accessible to them. Because they don’t have autism, but they do have FASD, or they do have ADHD, and they got the same type of psychologist, the same type of resources, the same type of educational help as the child who was less needy who had autism.

N. Simons (Chair): Well said. That’s a good summary of what we’ve heard. Thank you, Jaandi.

Thank you, everyone.

We will now adjourn unanimously.

The committee adjourned at 10:48 a.m.