Episode Transcript
[00:00:00] Speaker A: Connect FM mentioned Kita World Autism Awareness Month Connect to report card Namdai editorial segment Various stakeholders various experts on a multi day conversation.
Awareness, acceptance, inclusion so essay series the Adi essay Sandarbadevichi Marina Dr. Sophia Sandhu Hon Shamal Honjaria A clinical psychologist doctorate autism field about supporting the autistic kids and their families Masters thesis research.
Assessment the treatment barriers Autism assessment.
Doctor Jeevan mentioned editorial segments multi day conversation.
[00:01:33] Speaker B: Because
[00:01:36] Speaker A: autistic families support the journey Assessment.
[00:01:44] Speaker B: Yeah I think even kewari before I think it should start before because assessment that can be very hard for a lot of families and even knowing, you know, do we need an assessment?
I think really I would like the support to start before that step. Even
[00:02:13] Speaker A: so early signs.
[00:02:16] Speaker B: So early signs.
It can be very for every child.
Every child is unique. So I don't want people to hear oh us symptoms, behaviors.
It's definitely not autism. However, we do see some common signs and symptoms. Some of those can be differences in social communication. So social communication or like eye contact.
Gestures used to communicate like, You know, to show. I don't know, you know, we communicate in other ways.
[00:03:26] Speaker A: Body language.
[00:03:26] Speaker B: Body language, exactly.
We see less of that in kids with autism a lot of times.
So those are some of the social communication things that we're looking for.
Repetitive behaviors.
Repetitive or restricted interest.
So o can be repetitive motor movements.
They might flap their hands, kick their feet, jump both ka d circle which spin Karijana very active moving a lot but repetitive action.
Sometimes it's movements like this, sometimes it's interesting.
Both enjoy same show.
Rewind. Karniya ochij dekhniya over and over again deep dive kaddaiya ek interest. Which unusual interest.
You know, ceiling fans, garbage.
Or it can be common interests like trains to dinosaurs. It can be anything.
But the difference between that and neurotypical children is the intensity. Like both deep dive. The intensity rigidity of those interests. Those are the things that stand out and we consider those red flags.
I think always talk to your family doctor.
However, my caveat is more nuanced. More mild presentation autism that isn't always captured in a visit with family doctor. Right. Okay. So I've heard from many parents concerned. Hai gi si asi Dr. Korga si por ona nae kya vi koi na.
You know, they'll catch up. It's nothing, don't worry.
And then assessment if we didn't hear that. So I think it's you know, family doctors first line. It's very important.
But jai thunu lagda know there's something more. Don't be afraid to advocate for your children.
You can. And if you have certain delays, you know, speech, language delay, very common with kids with autism. So there's nothing stopping you from reaching out, getting support from child development center. Going to private speech therapy. If possible.
Coverage out of pocket, you can still access those resources.
[00:06:25] Speaker A: Okay. So assessment doctor, family doctor reference.
[00:06:33] Speaker B: Assessment, Public option. Right. So that's going through Sunny Hill, the BC Autism Assessment Network. Oh, fully covered msp. Hai ga it pays for it. Okay. The second option is private assessment. So that is out of pocket for most families.
Extended health coverage.
If you have health insurance, a lot of those will cover services by a psychologist like me or speech language pathologist.
[00:07:07] Speaker A: So how expensive is the private one?
[00:07:10] Speaker B: The private one, it can range a little bit, but I would say on average you can expect to pay about $3,000 for the psychology portion. Usually around, you know, on average $3,000. And then speech is I believe around 5,500ish.
Oh, coffee lengthy. Hai ga that's the downside, actually. Prepare kan le interview. I was trying to find the exact time. Oh Hani Horn online. I noticed usually in my experience, What I've heard, 18 to 24 months from the time pediatrician referral Lana. To the time of assessment, it's usually about two years.
[00:07:59] Speaker A: Two years?
[00:07:59] Speaker B: Yeah. And that's after the pediatrician puts in the referrals. So Jay to see public pathway Lana. Then first you need to go to your family doctor, get a referral to pediatrician. Then the pediatrician will refer you to Sunny Hill.
An assessment is warranted.
If you go private self refer Kar Sakhda. You can call psychology clinic yourself. You. You can call a speech language clinic yourself.
And right now the pediatrician is not required autism funding.
Right now it's not required. It's still a good idea.
Seeing a pediatrician is very helpful.
But to apply for the funding right now, the government has said a pause on that. So as long as psychologists speech language pathologist, you can get full autism assessment done.
[00:08:59] Speaker A: So Mera Agala question.
Supposing somebody chooses the private path therapies and support.
[00:09:09] Speaker B: Yes, yes, of course. So of course, and I think we might talk about this a little bit later, there's changes coming to funding next year. But right now, as long as you have a report and standardized test testing from a psychologist and speech language pathologist for under the age of 6 funding access for children over the age of
[00:09:31] Speaker A: 6 psychologist Dr. Autism assessment like during the autism assessment.
[00:09:43] Speaker B: So it can vary from practitioner to practitioner. But in general, someone like myself, psychologist Parents interview Karniya to get a better sense of what do things look like at home. Kar DEVICH COMMUNITY Devech dusrej wa akande naado khair deha what has their development been like over their lifespan? Because autism, the diagnosis, it's a behavioral diagnosis.
It's not something that your doctor can say, send you to get blood work done for or a scan. It's based on behavior development over time.
So we're trying to collect jinni information from as many different sources. So parents interview usually at least two hours, sometimes longer.
Then we do testing with the children themselves. And. And we're doing lots of different types of testing. We're doing cognitive testing usually to see the thinking, the problem solving skills.
Are they behind other children their age or are they keeping up? We're looking at their speech and language skills. And then OJD autism specific assessment For Bache it just looks like play. You know, we're playing with different activities, different games.
But it's very specific in the way that we're doing it. And I'm looking for those behaviors that we usually see in autism to help differentiate neurotypical kids and autistic kids. So O sari information we see, okay, diagnostic criteria.
Can we check off enough boxes under there? If yes, we say they have autism. If no, then we say what else could be going on? And then always, any practitioner that you work with, recommendations they should walk you through, okay, what are the next steps? How do we access funding? What therapies are going to be most helpful for my child.
[00:11:52] Speaker A: Dr. E. That's okay.
Can a child be reliably assessed?
Is there something like assessment proper?
[00:12:04] Speaker B: No. I would say no. Certainly.
We see kids all across the lifespan. Even adults requests adult assessment.
So I don't think it's ever too late, you know?
Mera Bachcha STRUGGLING School DI Veech Social relationships.
There's no such thing as too late.
Sure, they might have access to different types of funding. Right. But understanding Sanumerdiya V okay, this is what's going on. It's so helpful for the family, for the child, because the family then understands why. Okay, right. Why is that happening?
Why are they so doing well academically?
That's so hard for them. It can help really have more compassion for kids when we understand their strengths and weaknesses. And I think it can really help kids with their own mental health understanding.
There's nothing wrong with me. My brain just works different.
And these are the things I can do to function in society and to get along with other kids.
[00:13:21] Speaker A: Dr.
Research about autism, Gender based.
[00:13:36] Speaker B: Absolutely.
It's a very big conversation though. There's many reasons why.
But in general, I think research, the consensus is JD presentation, it's more subtle than with boys a lot of the time. So JD said the understanding autism, a lot of it is based on research with boys.
And so the way that we diagnose is based on that research that was done with boys. Right. Caucasian boys.
And so we know now more about autism. We're learning more every day. So Sanu Horn Patavi the presentation little bit milder.
The ability to imitate Dusrandi is usually a little bit better than boys. So Onna Pata Lag janda How am I supposed to behave in this situation?
Social feedback.
They're much more attuned to that than boys sometimes. So they change their behavior.
Right. And so.
Boys are often very busy too. Right. So those behaviors, their difficulties can be masked in girls a little bit more interesting. Typical lag diamond more Right. With Mundae you can have more unusual interest, repetitive interest.
They can get very fixated on those. Sometimes with girls it might not be as obvious. And so that's why it can be harder to spot in girls. Even for those of us who know what to look for. We even struggle sometimes with girls. So that's something that's important for families to be aware of. But there's many, many reasons why
[00:15:43] Speaker A: somewhere like down the line, specifically diagnosis. Ms. Hojant.
Okay, tell me, diagnose, assessment, diagnosis, How do you make sure feedback that is supportive rather than being overwhelming?
[00:16:09] Speaker B: Yeah, I think it's overwhelming regardless. Right. And I always warn parents about that information.
Whether it's diagnosis or no diagnosis, you're coming to me with concerns. It's going to feel overwhelming. However, I think having compassion for parents, using parent friendly language, explaining it to them in a way that makes sense can go a long way.
Right. There's nothing wrong with them.
Their brain works different and everybody's brain works a little bit different.
I always give the example. I have a sister, an older sister who's very intelligent. When we were growing up, I loved to read.
I was very good at reading and writing, but I was really bad at math.
Very bad at math. My sister was really good at math and science. She didn't care about reading very much.
So our brains were different. We came from the same family, same parents, but, you know, similar genetics. But we came out differently. Our brains are different. But now in her 40s, my sister has written two books. She's an Author. She went from not really caring too much about reading, writing to being an author because she worked at that. So it might have been that I'm still not very good at math.
I got tutoring to help me with my math skills because so similarly with autism play communication we see those deficits in. I explained the tutoring, right. We're going to get them that support.
We go through this process otherwise to put labels on kids for no reason. We do it so that they can access the right help, the right support.
So these are my kids strengths. So I focus a lot on strengths. You know, I talk about, okay, yes, these are the areas where they're struggling. But look at all these wonderful things that they do.
And you know, and I did say earlier V there's no such thing as too late but I do want to emphasize very early identification hagia that is still very important, right. So the earlier kids can get in. It's better for long term outcomes.
So I really emphasize, okay, you took that step, the O step la lea already the hardest part is accessing an assessment, accessing support.
And I try my best to empower them and say okay, these are the types of therapies we're going to do. And Jeriya Chi Jan Tusi Abde Bachelay envision ka da the future.
They can still do all of those things.
And so I really try to emphasize that. I say I don't know what your children are going to do. I don't know what my children are going to do. But Jeri on the potential, it's still amazing. They can still do everything that you imagine for them. And I tell them, you know, there's lots of people walking around in our society, in our world that have autism and they don't even know. Yeah, right. That's I think as we learn more and more about autism we just like, you know, as humans there's different characteristics we have like eye color, the vej, variance on the height, weight, skin color. In neurology too, you know, autism is natural variants that happens in neurology. And so the more we talk about it, the more we learn about it. I think that can ease some of the parents concerns because as parents that's our biggest issue, right Is what does this mean for our child's future. So I tell parents I can't tell you what the future has in store potential.
They can still do everything.
[00:20:04] Speaker A: So emotional support, when we come to practical support, process in place.
Required.
So process in place.
[00:20:19] Speaker B: Yeah, process.
I usually will recommend voks type of therapy you know speech therapy will be helpful behavior therapy, occupational therapy Like I said, every child is so unique so I try to tailor for that specific child. I think this is going to be the most helpful But I also empower parents to think what works for us, you know what aligns with sarde values goals for our child And I tell them that goals need that's going to change over time. Right. So I give general recommendations these types of therapies I don't usually say because there's so many options right now it's a beautiful thing in 2004 we had very few options both hege yeah but I will say this type of therapy would be most helpful and then encourage you know email Karo interview Karo du je clinicians who are we comfortable with? Do we need somebody Punjabi speaking Do we want somebody who comes to our house or do we want to take our children to a center where we drop them off for a few hours? Right. So options and I think there's no right or wrong it's what's most helpful for that particular family.
[00:21:46] Speaker A: And again j parents jdavi options select kardiya for example.
How option was the funding available?
[00:21:58] Speaker B: Yes as long as so again these things might change right now you know funding model March 31st of next year thakagia in place so children under the age of 6 ona the funding they need to use a provider that's on a list online called the RASP list registry for autism service providers. So as long as their therapist is on that list it's covered. It's no problem for children over the age of 6 flexibility so you can use other providers too. And kwari focus different you know for older children they might not need one to one therapy. They might use the money for their tutoring, you know for academic tutoring or they might use it for like a social skills group versus individual therapy. So there's more flexibility with them because the funding amount is different too.
That's all going to change next year
[00:22:59] Speaker A: as well too and it is going to change in the month of May I guess.
[00:23:04] Speaker B: No, it's April 1st of 2027 is when the new system is in place
[00:23:09] Speaker A: in place Dr. Communities.
Not just awareness poster campaign
[00:23:23] Speaker B: real change
[00:23:27] Speaker A: so communities awareness acceptance, acceptance, inclusion a possibility for the communities to have this journey.
[00:23:37] Speaker B: Absolutely.
I think it's a big journey and a long journey. It's not going to be overnight but some of the things that I think is I think this goes beyond awareness because the more we talk I think the more normalized it becomes because, you know, people might listen right now and hear this word autism. But you know, true understanding Nihoni, probably until they meet somebody. Right. And we're learning more and more about autism. More kids are getting diagnosed because we understand it better. There's, there is more awareness.
So I think if, you know, the listeners, they might think, you know, sanu takoi patani, that will probably change at some point. It's going to touch your life.
And I think it removes some of that stigma, it removes some of the shame around something like this, the fear around something like this. And so I think that's a really valuable first step.
Otherwise, I think centering autistic voices, like talking to autistic voices, people.
And that was hard in the past, right, because we didn't always have the ability to do that. A lot of Jeri research, Nami AI hoi in the last decade or so, we've learned so much more because now we finally have adults that grew up, were diagnosed young, you know, 90s, Zivich, late 80s Zivich. And they went through years of therapy and now they're adults and they're able to share their experiences with us.
So the more that we can actually learn from autistic individuals, I think that is the direct path to more inclusion. When it comes to policy changes, government changes, those families, those individuals need to be at the center of things.
[00:25:30] Speaker A: Doctor, funding, in your professional experience, funding changes, Are the parents concerned?
[00:25:41] Speaker B: Absolutely. Yeah.
I think, to be honest, JD Funding change is horny. Even I have questions. I'm not fully aware.
They're moving from a diagnostic model to a needs based model, which is great in theory. Right. And it's going to open up funding to other diagnoses as well, which is very needed. Other groups have been neglected for many years, however, needs based assessment.
Right. So even I don't know the answer to that. So clients. Hai, Gaya. You know, I just talked to a family last week.
He's very intelligent. He actually has high average cognitive abilities.
But he does have autism, he does have adhd, he's in kindergarten.
He's very impacted at home and at school. But on paper, because Ode kore koi, intellectual disability, language delay, it's possible he's not going to get any funding. Individual funding.
Right. And the government has said that those children that would lose access to the funding will be covered through community support, which again sounds great because they're saying they're going to increase access to community supports that will be covered. Right. And so they don't need the individual funding for that, but I'm just, I'm not convinced that that's going to be enough for these children. And Jeri impact Hogi onna the mental health, family functioning te education, I think that it could have very significant impact. So, you know, I'm very supportive of opening up funding to other diagnoses and other children who need it, but I'm not supportive of them taking away from kids who are relying on it today and will rely on or should be able to rely on it in the future.
[00:27:40] Speaker A: Dr. Finally, Assessment support, funding system, you being a professional, you have been involved with this in this field from a long, long time on basis of clarity, on basis of wait time, on basis of after diagnosis support.
[00:28:16] Speaker B: Oh, that's a hard question.
[00:28:24] Speaker A: Do you think more is needed?
[00:28:26] Speaker B: More is needed. I think the reason I struggle is because more is definitely needed. But I'm comparing it in my mind to other places and BC is actually one of the best places to be.
So it depends. But I think that with the uncertainty of Jerry funding the model, Hoagi with the wait times, with the confusion of, you know, even private assessment, what does that look like? What does that mean?
I would give it a C right now, maybe. You know, there's a lot that needs to change and once parents are in it, they have the diagnosis, they have a plan. There was a lot of satisfaction, right, from autism families in British Columbia, they had control over what providers their children saw. They could control, how much therapy they got.
And so overall, people were very happy with the model. With the changes that are happening now, I don't know how satisfied families are going to be.
[00:29:34] Speaker A: So uncertainty.
[00:29:36] Speaker B: Yeah. And that makes me nervous because like you said, I'm passionate about helping these families. I want everybody to be well supported. So. So that's why I'm not 100% sure and I'm nervous about what things are going to look like.
[00:29:48] Speaker A: Dr. Sandhu, thank you so much for your time.
[00:29:50] Speaker B: Thank you for having me.
[00:29:51] Speaker A: I can imagine Expert clarity listeners.
We are so thankful for that and we'll keep this going. And at the end of our segment, how it all went.
[00:30:10] Speaker B: Okay, thank you so much. Thank you very much.
[00:30:11] Speaker A: Thank you.
[00:30:12] Speaker B: Bye.
