Insiders’ Perspectives on Adult Autism Diagnosis

Currently, in British Columbia, there is no system tracking the number of adult autism diagnoses. About 2.5% of children in BC have an autism diagnosis, which translates to about 100,000 adults in the province that may meet the criteria for autism. With the lack of a standardized process for diagnosing autism in adults, clinicians adapt the diagnostic measures that were originally designed for children when diagnosing adults. While some diagnosed adults may apply for Disability Tax Credit (DTC) and Person with Disabilities (PWD) status, the majority of adults seek a diagnosis for personal validation and self-understanding. 

There is no publicly-funded system for adult autism assessments and the waitlists for a private assessment are extremely long. There is a need for public systems to resource the assessment procedure and the training and maintenance of diagnostic professionals.

About the Presenters 

Transcript

The talk was presented over Zoom with a group of live participants and broadcast to Facebook on Oct 22, 2021. The transcript has been edited for clarity.

Introduction

Brock Sheppard (B): At AutismBC, we receive over 10,000 requests for information every year and for our last 11 months, the number one request by topic has been about adult diagnosis and adult assessment and the process in British Columbia. So, we’re very happy and hopeful to get this presentation to be able to get you the information that you are looking for. 

Dr. Grace Iarocci (G): Brock, do you want us just to introduce ourselves?

B: I think that’s a good way to be able to start. Thank you, Grace, could you please introduce yourself? 

G: Sure. Hi everybody. I’m really glad to be here today. I’m Grace. I’m a professor at Simon Fraser University in the Department of Psychology. I’m also the director of clinical training there. So, I’m trying to get as many students trained up. Hopefully, in the future, you’ll be seeing some of them give talks like us. I’m also a registered psychologist in the province and I see well pretty much the whole age span from little guys to adults.

How many autistic adults are in BC?

G: So today I’ll be talking about adults. And I’ve been given a few questions. So I’m going to try to address as many of the questions as I can. So the first one was “what is the number of adults diagnosed?” and I have to admit I could not find any statistics on adult diagnosis in Canada. I did find the CDC in the United States has some figures. Their estimates, of course, but it’s somewhere in the sort of five and a half million people. They estimate are autistic adults in the US and it ranges of course from state to state but the lowest figure was 2% of a particular state to 2 ½% in other states. So we can see that it is quite elevated and there was a research that suggested that the rates that we and children are likely to be very similar in adults. So, if we take, you know, sort of Canada’s child figures and right now in British Columbia, I believe although I’m not up to maybe David knows the latest figure but I recall the last one I saw was one in 40 or 46 children who was being diagnosed with ASD in British Columbia. David, do you have any newer information on that or? 

Dr. David Worling (D): I think in the slide you’ll see, Grace, I think if we use the MCFD data, it is closer to about 1 in 40.  

G: There we go. Sorry, I wasn’t looking at that. Yeah. So, it’s climbing. Yeah, definitely every year. It is getting higher. So we can estimate that probably when it comes to adult diagnosis the figure would be similar. So, we’re dealing with a significant number of people and of course, as many of you know, in British Columbia, there isn’t a system for tracking or diagnosing adults at this point, the way we do children. And so, we aren’t tracking these numbers and that is I think problematic because we have obviously a lot of folks in need of various services that aren’t going to be provided if of course nobody knows that these folks are out there. And the ones that are being diagnosed or being diagnosed privately. And of course private clinicians. So like myself and David who do these diagnoses, we don’t have a system of you know pulling our numbers or even knowing you know who else is doing diagnosis although we do know a handful of people who do, but there may be others out there and so it’s really very fragmented and there’s not a system of being able to count or track how many adult diagnoses we’ve done.

The diagnostic process

B: Great. So if you do an adult assessment and that assessment leads to a diagnosis, you’re saying there’s no place that you need to then go and register and there’s no discussion between people who are providing the assessments or the diagnosis?  

G: Uh no, no formal mechanism for that. We have informally gotten together. So, a few of us like David and I and a few others who do these diagnoses have gotten together almost out of our own personal you know, need to to to want to improve what we’re doing. Um and so we’ve had discussions informally like on Zoom for example where we’ve talked about how we do these. What are the things we see as working really well? What’s not working so well. How can we improve? Adult diagnosis So. we’ve had those kinds of informal talks but only amongst ourselves. Um and so really there hasn’t been any you know talks with government or we’ve had some talks with health services but you know, those are more around mental health issues, not so much diagnosis. Okay, and then, if someone were to collect or that data, like, who would be best suited to be able to do that? Well, obviously, I would say similar to what MCFD is doing, right? So, an MCFD for adults would be my or you know, expanding what MCFD does. Um to adults, although they wouldn’t be happy about that, I’m sure. Um but we do need a provincial body that is able to track folks as they come into the triage, you know, system of needing a diagnosis and then going through the process of a diagnosis and then, the outcome, right? Of what is the diagnosis cos some may be positive and some may not. Um. Right.  

Oh, I’m sorry. Yeah. So, people are asking MCFD. I’m sorry we tend to use these acronyms. It’s the Ministry of Children and Family Development. They’re the ones who provide funding for children on the autism spectrum. Okay, could you expand a little bit more about just like what the process is of how adults are diagnosed and if they’re or assessed and is there a standard process? Well, unlike what we do for children, we have and developed years ago, we developed a standard and guidelines for diagnosing autism in children. We don’t have that kind of standard and guideline for adults. but for example, David and I and a few other clinicians who work with adults, we’ve come together and we’ve discussed what we do. So, each of us has kind of created our own sort of system of diagnosing adults and surprisingly, we are doing quite similar things. I guess if you have enough experience, diagnosing autism when you apply it to adults, you generally see things very similarly and you use similar techniques or measures and so on. So, we are somewhat consistent in what we’re doing but it wasn’t designed this way because nobody actually came together and said, this is what we’re gonna do when we diagnose adults. There is nothing out there even in the literature. There’s nothing out there that tells very specifically, you know, a standardized process for diagnosing autism and even the measures that we’re using, they were originally designed for children. So, we’re adapting them. Um and sometimes, you know, it works. Sometimes, it doesn’t. So, you have to kinda pick and choose things that you’re going to use. So, it’s not an ideal system right now. 

B: So, would you be able to tell me anything that kinda differs from your process and then and maybe the same question for David of like, what your process would be so that we’re talking in more kinda concrete language? 

G: Sure. So, there are at least in what I do, I’m gonna let David speak for himself but there are at least four major components to an adult diagnostic assessment. So, the first part is the in-person what in children we would do called and a sort of structured observation. It’s called ADOS, the Autism Diagnostic Observation Schedule and that I generally don’t do the whole thing like I do with children. Sometimes I do. Depending on the age. Like if it’s of a younger you know child for sorry younger adult maybe an adult who’s nineteen or twenty or you know sometimes it’s more appropriate and I can do the whole thing. But for older adults, I tend to pick and choose certain parts of that instrument the ADOS. Um and so that that is an interactive sort of where you’re asking questions but you’re also having a discussion and you get to observe how the individual behaves in a kind of social situation albeit a little contrived.  

And then the second component would be very important. Developmental history. So, if a parent is available, that’s ideal but that’s not always the case. So, you know, if we don’t have a parent available, I try to gather all the history I can get. So, school records, sometimes even videos, journals, school, yeah, school report cards, previous reports, sometimes if it’s available to me, speak to a sibling, speak to a spouse, you know, an aunt, so, some way of gathering information about what was happening in that person’s history, cuz that’s an important component of determining whether it’s autism or something else.  

And then the third component is kind of a series of questionnaires that I would give the adult themselves but maybe also an informant someone else who either lives with the adult or who knows the adult really well. And then I would ask more questions to the individual themselves. Talk about their history, their own experience, what they remember from their childhood, what’s happening for them now in the workplace, at school, you know, wherever they happen to be in their life stage and here I’m for a differential diagnosis. So, looking to see is there anything else? Other than autism or, you know, in addition to autism, So, it could be that more than one condition co-occurs or it could be that it’s not autism it’s, something else. Um and so, I want I wanna be able to rule out other sorts of conditions. 

And then the fourth component would be to do a very thorough timeline of the vocational history. So here I’m looking for even volunteer work, you know, any kind of work situation because for adults, work is like school, right? So, it’s kind of the equivalent of when we look at kids and we say, what’s their school experience like? For adults, we’re looking to see what’s happening for them at work. You know, what are the strengths that they have in the workplace and what are the challenges that they’re having in the workplace? David, do you wanna say anything else about what you do that might be different?  

D: I think maybe I’ll just hold for my section then Grace and that way I’ll kinda wrap it up but the short answer is Grace and I have a very similar protocol and process in doing it so it wouldn’t be anything different now. Okay. 

G: Great. So yeah I guess that sort of sums up what that process is like. And then I guess I would add that it can be emotionally triggering to go through a diagnosis process. As you can see, it’s quite elaborate. It’s quite extensive. It goes back in time so people are now facing their childhood again. Being reminded of things that happened. It can bring up, you know, memories of traumatic events, bullying, abuse, you know, things that happened, or are happening, that are very emotionally upsetting. Um, and so, that’s part of, you know, sort of managing that, can be, tricky, but, overall, you know, it is difficult in the short term, but I think that it has many more benefits in the long term. Um, to be able to have this information. Um, of whether or not a person does have autism or, or other conditions as well. Um, and so we try, try to, make the process as therapeutic as possible in that, the person then sort of sees themselves with a different lens as opposed to seeing in themselves as weird. You know, I’m this weird person or I’m this person that you know, has no ability to make friends or I’m this person who’s so alone in the world, you know, and trying to really help the person see themselves differently through the process of discovering, you know, what’s going on for them in the diagnostic process. 

B: Thank you, thank you so much for that. So, just to be as clear, there’s only, I, in British Columbia, there is only a privately funded assessment process. There’s no publicly-funded process for adults and the processes can be different from location to, to location, is, the, last question that I have, kind of, for this slide, is, is there, a wait list or how, how would one go about finding, a place to find an assessor.  

G: Oh, yes. So, that’s unfortunately, not very good news. Like I said, there’s really only a handful of us who do these adult diagnoses and unless I’m unaware of a few people out there but based on the number of emails and you know calls that I get and I’m sure David gets even more. Um, the demand is overwhelming. So that is we cannot keep up. Um you know my waitlist now is into 2023. I mean I don’t do this full time. So that’s part of you know why my list is so long. But I nonetheless you know I know others like David and other clinicians that I know have similarly long you know have very long waitlists. It is a problem because many people don’t know how to do this or refuse to do it because they’re not familiar with autism or how to diagnose it in adults and so it leaves only a few of us taking on the huge demand that’s out there and so it’s a problem and also because some of the folks that we see will be eligible for services or you know government benefits for example. For example, some people are eligible for the disability tax credit or the person with disability designation or the community living BC personalized supports the initiative. So, these are unless you have an autism diagnosis you, cannot access those or you have some kind of diagnosis you cannot access those. 

B: Well, I think we’re gonna get into that more on our next three slides and just for time, I want to be able to move forward and have Dr. Worling introduce himself.  

D: Thank you so much, Grace for opening it up with that. Thanks. Thanks, Grace I. I just assumed you were gonna take the whole talk. I was enjoying it. Thank you. 

My name is David Worling. I’m a registered psychologist in Vancouver physically and then also in BC now remotely given the world of Zoom. I have been working in Vancouver with Child group, West Coast Child Lounge Group since about two thousand three and then found that many of the individuals I work with as they grew and I got older, moved into more employment, vocation, marriage, life, post-secondary education, and it was a real need as as Grace has pointed out and as this talk would suggest for adult service is in the world of autism and as we are learning they’re just they’re scarce. So, started moving into assessment with adults and that’s exclusive to what I’m doing now is sort of late teen and adult assessments with autism. Uh thank you everybody for joining and taking your time on on a Friday morning, rainy Friday morning here anyway to talk to us. I wanted to just I had some fun with numbers this morning. 

Why is adult diagnosis important?

In my little nerdy coffee break and looked at the numbers that Grace had talked about if we make the assumption that roughly 2.5 percent of the population of children here in BC currently have a diagnosis and those numbers by the way are not estimates. They’re actual numbers. So it’s about one in 39 to 1 in 40 kids under the age of 18 in BC currently have a diagnosis of autism. If I extrapolate out and use the Canadian stats in terms of population base. And if I just apply 2.5%, again, assuming that children with autism the ratio is the same in adults and there’s no reason to suggest it isn’t. And if we do the math and I look at in a Canada-wide population, there are about 30 million adults over the age of 19. If I multiply that out by the percentage, it’s about 780,000 adults in Canada would most likely meet criteria for autism. If I do it to BC ends, up being about a hundred thousand. There’s roughly 100,000 individuals in this province over the age of 19 would likely meet criteria for autism. We know for sure that we are nowhere near that in terms of actual numbers. It will be a fraction of that. There I don’t wanna spend too long on the demographic piece but I think it’s really important to to consider when we talk about adult autism diagnosis. If we go back 20, 30 years ago, the vast majority of individuals being diagnosed with autism were male of 5 or 6 to 1 and generally had IQs that were that were lower than the average population. We now know moving forward that gender differences is evaporating very quickly and we’re closer to three to four to one if not two to one in parody in some cases. And also we know that cognitively we’ve opened it up to many individuals that are quite cognitively able and so that shifts the focus on how we do assessments but it also shifts the focus on the people that are coming to get assessed. So there is a large number of adults that will have completely missed that initial sweep of assessments 20, 30, 40 years ago, even 10, 15 years ago because their cognitive skills were too good, gender issues came along as well as other mental health issues overshadowing what we now know as an autism profile. So, it’s important to recognize that this has been a very sort of organic process in terms of adult assessment. 

The other piece to keep in mind is that in the world of psychology and psychiatry. If we look at some of the earlier editions of the manual that we are asked to use from a statistical and diagnostic point of view relegated autism into the childhood disorder section. So, the assumption was that children have autism and there’s very little attention paid to those with that are older and adults and fortunately, many children grow up and turn into adults. So, we have a vast number of undiagnosed individuals as clearly in the chat. I can see people are acknowledging and recognizing and being frustrated by the process. My, the first question I have on my slide is, what are people hoping to get from a diagnosis and, I can see in some of the chat, it’s an excellent question. Sort of what’s in it for me? Why would I want a diagnosis and let alone how do I do it or afford it or support it but just why would I want one of those? From just a practical point of view, there would be a section of adults who are looking for an assessment as Grace had talked earlier order to access some services. To be fair, there are not a lot of services to access. There are not a lot of resources to access but some of those services do require formal diagnosis like Disability tax credit or PWD or persons with disability, they will require formal diagnosis So, going through that process is, unfortunately, a mandatory step. 

I would just say that in my experience that the majority of individuals that I’m assessing in the last two to three to four years aren’t necessarily accessing those particular government services and their reason for wanting an autism assessment is for personal knowledge, a validation, and understanding. If an individual comes into my practice at 35 years of age and they walk out with a diagnosis of autism, they’ve had autism for the last 35 years. It hasn’t been given a title, hasn’t been given a name. There’s a very good chance it’s been given other names or other diagnostic titles. So, whether I saw in the chat, people talking about borderline, depression, anxiety, social anxiety disorder. There are a number of co-occurring mental health conditions that can look a little bit like autism or are misdiagnosed for sure but those individuals coming in now are just looking to say, okay, I’ve had 35 years of feeling different, feeling like I’m struggling, feeling really tired in my experiences socially. I’m having difficulty with my executive functioning or my mental health or my marriage or my employment or my parenting. And just having that diagnostic confirmation is huge. It’s really a very important step for someone to move forward if I sort of imagine that diagnostic decision to be a bit like an anchor. And so it sort of anchors the person now saying, okay, I have autism, I kinda wondered if I did. I always knew something was different or that I struggled differently than others. So, in a way that anchor then allows the person to go back and reflect on those experiences that they’ve had in life that they now can see through an autism lens and help to understand and put in perspective. It also allows them then to move forward and to say, okay, well, if I do have autism what is it that I can do? How can I support myself? How can I let other people know and what resources are out there? So, without that Anchor, it’s really hard for individuals to move forward with that. 

B: One of the big things that autism BC does is try to highlight the differences and different perspectives from the autistic community and we do this in our AutismBC connects profile. So, last year, we highlighted 35 different people that were across British Columbia that were sharing their stories and everyone has that different feeling and different meaning but it also highlights that you are part of a community and being able to find other people in the community you are a part of is extremely empowering and being able to not feel alone and feel like, look, there are other people who understand who have walked a similar path that I have. So, finding those support groups, finding that community, finding that sense of identity,  

D: I would add to that as well. Absolutely and I’m not gonna hesitate a percentage but I’ve had a significant number of young women coming in for assessments that are in their sort of early twenties late teens, early 20s that are are discovering, if you will, that they may be on the spectrum through social media. So, through TikTok or YouTube and they’re seeing these other women who have a formal diagnosis or self-identifies having autism and living their life, their experience through that and realizing, oh my goodness, that really describes my experiences. I think I might have autism and then they’ll move forward to get that assessment. So, there’s just a name awareness not only from the clinicians but in the world in general but also from social media. People really appreciating and understanding the need to share. So, I think you’re right. It’s really important to have some community support for that.

What are the barriers to assessment and diagnosis in BC?

B: Do you know with the wait list time and the barrier to diagnosis having a cost associated with it in British Columbia. Are there supports that people can access prior to an assessment or after an assessment that you would kind of refer people, people towards like counseling, life coach, OTs, support groups or other.

D: This is the part one I’d love to say. Here’s the really long list of services available pre and post and we just know that it’s not there yet. Given the demographic shift I talked about earlier is that the this in my experience the services in BC anyway that are designed for individuals who have been assessed a while ago maybe struggling cognitively. There are some pretty straightforward resources available through CLBC and Work BC. There are some specific programs available. But the demographic those individuals who don’t meet that criteria. It’s exceedingly small. So, I’m seeing some of the chat people talking about, well, what do I do about how do I get accommodations or adjustments at work or how do I, how do I support my relationship with my partner? How do I do those things? So, this the short answer Brock is that, you know, the pre part in my experience is just the individual’s understanding or awareness of themselves and how this diagnosis diagnostic overlay may kind of fit for them. I think that’s really important. 

So, coming in with information. So, I’m having people that are doing their online questionnaires and realizing that they’re scoring quite high or they’ve had individuals in their life, you know, talk to them about maybe possibly being autistic and so they’re starting to adjust to that. I don’t have a list of pre-assessment materials to be fair. The post-assessment material again, the list is growing. Uh admittedly slowly. So, it would be, you know, whether it’s sort of suggestions specific to work, to marital or relationships counselling. Again, finding clinicians that have experience and knowledge in working with adults with autism is a small and slowly growing number and I, we’ll talk more about that in the next few slides around training and rotting that out to the larger community, hopefully of clinicians. Occupational therapy, speech and language, and challenge can be and that a lot of cases, those individuals that are able and to be fair, I do and I won’t speak for Grace but I see a very skewed sample of individuals that can come in for an assessment. They have to be able to make it into Vancouver. They have to be able to afford it. They have to be able to take time off work and or get resources. They have to have the executive functioning to set it up, follow through, fill out forms, etcetera. It is a bit of a skewed sample. There are there must be so many individuals out there that just cannot access those things for a lot of reasons. So, being able to set it up in a way that gives full provincial access it will require some form of government oversight and as Grace talked about, it’s hard to find a government body that will attach onto it and look for resources and be able to support it.  

B: Can I ask you just one more question that we’ve seen come up in the chat and was sent through. You mentioned Self-Assessment or Self-Assessment Tools or those criteria before they have seen you. Do you think that those tools are reliable? Are there any that you or your clinic recommend or direct people towards and do you see the same results that come from those self-assessment tools as someone who does an assessment with you? It’s a great idea and I see people are starting to put some links in the chat and that’s great. 

D: So, you know, like any other tool, it’s, you know, I don’t know what a better hammer is for a certain kind of nail and just saying we need a hammer doesn’t really quite do it. So, I think the advantage to many of those assessment tools is and presumably and most of them do. They acknowledge straight up in the very beginning that this is not a diagnostic assessment. This is just a tool to provide you with some areas of functioning that may apply to autism. So, there are some that are better researched and are more anchored in what would consider a classic diagnostic framework and some that are more descriptive and narrative. 

To me, the value and answer to your question, Brock, I, it’s rare that I’ll have someone who scores high on one of those tools, comes into my office, and doesn’t walk out with a diagnosis of autism. I. mean, they generally are quite descriptive and they do, if they’re done well, cover a variety of ranges. I would, I’m gonna defer to Grace later for that one because I, as the researcher, she probably has a better sense of which ones are more vigorous when it comes to academic support but clinically, I think it’s not a bad idea to do that. 

B: Okay, that’s great. Thank you so much. I wanna move on to barriers with diagnosis and move back to Grace at this point. 

G: Okay, great. Um yeah. So, I’ll just briefly touch on what David just said. Um yeah, I agree that no one tool is you know, should be used for diagnosis, however, screening tools are useful and actually there’s that site that’s really good called Embrace Autism which has a series of screening tools or questionnaires that are and some of which David and I use which are evidence-based. They’ve been researched and can be quite useful. I know some of our members have gone to the Embrace Autism. It’s out of Ontario and then they’ve brought that back to their GP here. I was like, look, I’ve used this tool. I’ve sat down. I’ve talked to someone. Someone helped me through the different steps and is this something that can be recognized by a GP or another trained professional here? Yeah, the only caution is that, again, not, not any, no one tool can really tell you if you have autism because, let’s not forget that some of these tools, you know, you can have high autistic traits but not have autism per se, or other people with other types of conditions can have high autistic traits, and not necessarily have autism, right? So, so we just have to be careful that it, it’s an indication, a kind of a red but it doesn’t, it shouldn’t be used as a diagnosis. 

Okay. So, we’re talking about barriers. So, let’s see where waitlists. I already mentioned that I think we all have long waitlists for adult diagnoses. So, if you’re an adult and looking for a diagnosis, unfortunately, you’re gonna have to wait probably a year if not more in some cases. I honestly don’t have any solutions for that at the moment. What I’m trying to do is that I’m working with a few psychologists who have interests who I can train to be able to, so other people are doing these assessments and more people can be out there to build capacity for doing these assessments. We’re training students at SFU so once they graduate, again, we have a few more psychologists who will be able to do these. Unfortunately, there aren’t many psychiatrists who are trained to do this. So, MSP will not cover these assessments. As far as I know, there was only one psychiatrist and he’s retiring, Doctor Tony Bailey, who was doing these assessments and there may be more that will come up but at the moment, I’m not aware of any psychiatrists who is doing these assessments.  

B: And what total training is involved and how long is the process to become a trained professional? 

G: So there are the two main tools that we use. The autism diagnostic interview and the autism diagnostic observation schedule. Those are standardized tools. They’re kind of the equivalent of like an IQ test. Right? So in order to administer an IQ test you need to train very specifically on how to administer an IQ test. And there’s at least two-day workshop that people need to take in order to familiarize themselves with these tools. And then that’s not enough. They really do need to get some supervision. Once they know how to administer it. They need experience and they need a supervisor like myself or David for example. To then help them figure out all the sort of fine-tuning around how to use those tools. So, supervision is probably, you know, the most important thing. So, getting the training on those tools then being supervised by someone who has experience and so that takes some time. 

I would say, I for example, one psychologist I’ve been working with who now is able to do independently work on this is for children, you know, I’m talking about. It took her about a year to feel comfortable and confident and now she’s into her second year and doing the assessments on her own. So it’s not a quick easy process, unfortunately, so it does take some training. Some time.  

So where we’re at at the moment is that if people want an adult diagnosis in British Columbia you have to pay privately. Or through your extended health care. So, for people who have extended health care, it’s at least something. It may not cover the whole cost, in some cases, it does. But at least it’s something to offset cuz it’s quite expensive and the reason is expensive is because it’s quite a lengthy process. So, psychologists in British Columbia charge an hourly rate and the average rate is $200 an hour. And so if you multiply that by 16, 18 hours of work which usually includes the writing of the report and the feedback meeting that you have to discuss the results, the recommendation. It can get quite costly, right? So we’re talking somewhere in the, you know, $3,600 to even $4,000 depending on how much is involved in the assessment. It really comes down to how much time it takes. So for most people, this is not feasible, right? It’s just not affordable, for most people and as David said, we tend to get, in private practices, we tend to get people who have jobs, who can afford it because they have extended health care or they can afford it themselves out of pocket or they can use it as an income tax deduction as a healthcare income deduction but again you know not many people can have that money available to pay out at one time. So it really closes the door to a lot of people who might be very needy and have the need for a diagnosis but don’t have the means for a diagnosis. So, it’s really not an equitable system.  

B: Yeah. If someone had a diagnosis from a different place like from the United States or from a different country and they moved to British Columbia, as an adult, is that then, accepted in British Columbia? Is there anything that you have to do? 

G: That’s a good question. So the Ministry of Children Family Development would not accept a diagnosis from elsewhere. You have to get a confirmation in British Columbia. However, for adults, we don’t have the same system, right? There is no funding that goes to adults. However, if adults need to apply for Community Living BC, for example, they would have to go through an assessment to see if they meet the criteria for adult services as a person with autism. That’s a bit trickier because you do need the autism diagnosis. Now, if it’s from another country, it would have to be established that it wasn’t an appropriate diagnosis. I suspect it would be whoever the psychologist is that’s doing the assessment for meeting criteria for CLBC would have to decide, is this an appropriate diagnosis? And then be able to vouch for, you know, that diagnosis and say, yes, I’ve reviewed this previous report and this person does indeed have autism and then, do they also meet criteria based on their adaptive functioning? So, it is possible. It’s a little bit more flexible than it would be for a child in the province.  

B: Okay, and then, in your practice, do you see or have conversations with people who wanna know about the process that they’d have to go through and other than the cost, is there other reluctance to go through the whole assessment process?  

G: Oh, definitely. So, some people are fine saying, you know, I’ve done my research and I feel like I have autism. I’m self-diagnosing and you know, I’m okay with that and frankly, you know, I’m not gonna discourage them from doing, you know, it’s their choice. You know, the thing, the caveat is that if you have a self-diagnosis, it will only take you so far in that, I mean, yes, you have some, let’s say, some understanding of yourself and you’re able to maybe make changes in your own life and so on but if ever, you need to access certain services or accommodations at work, at school, or so on, a self-diagnosis is not going to, unfortunately, provide the evidence for those accommodations. Right? So it’s when it comes to practical purposes of the diagnosis then you may run into some trouble. Because people generally want to see some evidence and which is why a report is so important. Cuz a report documents in black and white, you know, how the clinician came to the decision that you meet criteria for this or that diagnosis and what the recommendations are and this is very important for people in post-secondary school, right? So, like university, college, if they need any kind of accommodations like extra time to do their work or you know, needing certain support services, scribes, or whatever the accommodation is they will not give that to the student unless they have a formal written report from a professional.  

So that’s where, you know, you have to decide what is the purpose, right? Like, am I, do I need the diagnosis for very specific, you know, purposes like this or do I just need it to know for myself? Right? And that’s kind of different.  

B: Okay, very individualized. I would do like, for myself personally, I feel like all businesses should be able to make support and accommodations and seeing a piece of paper is not something that should limit the access to the supports and accommodations, like you should be able to make accommodations for anyone so that they can be able to access work and get the best out of work. Like it should be the same with or without a diagnosis should be able to advocate for the supports that you need. 

G: Well, ideally, yes, but unfortunately, the way things are right now, even looking at this, so for example, I’ll give you one example from a recent client of mine. Who was asked, you know, as we go back to in-person activities, right? So, having to go back to in-person meetings, in person, you know, exchanges with people and so on. What happened was the client figured out that doing online activities was so much more well less stressful on the client, right? And seeing the difference during this Covid period really made this client realize how much they need that kind of accommodation for work, like reducing the time, the in-person sort of exchanges with certain people for certain situations. And now, you know, in order to ask for that at work, they really needed to provide evidence because they weren’t gonna do it because that was the rule. Everybody needs to come back to work in person. Everybody needs to do this and that meeting in person, right? So, unless you have evidence that you need this accommodation, and that it’s designated by a professional. the work supervisor would not allow it.  

B: Okay. 

G: That’s where these things, you know, can really have some teeth. Right

Ideas for solutions or Best Practices

B: Okay. I’m just looking at the time right now. I’d like to be able to move on just to the next section where we can talk about solutions and best practices and hope to call David back for this one.  

D: Thanks, Brock. I got a chat from Anna asking me to slow down and speak louder. So, I’ll do my best. I tend to get pretty excited and go quickly. So, feel free to tell me if it’s difficult to understand. 

It’s an interesting phenomena when it comes to diagnosis and autism. In that, it does require these very specialized skills, specialized training, and fairly lengthy procedures that are either very costly or not existent in the adult world. When you could walk into your GP’s office, your family doctor and you could walk out with a diagnosis of depression. You could walk out with a diagnosis of anxiety, you could walk out with a diagnosis of ADHD. After a 15 to 20-minute meeting and really in BC, why I think the primary reason that’s the case in autism is that there was there is funding attached to the diagnosis. So, in order to provide that funding, the government has asked that we have very specific protocols in place so that they are ensuring that those that are getting funded have autism. When we move to the adult world, that kind of disappears in the sense that as Grace had said, some employers are okay self-identifying or just using a neurodiversity umbrella term in getting adjustments and accommodations. As Brock said earlier, really, an employer kind of legally, morally, and ethically should be providing adjustments and accommodations to anyone who requires them in order to feel more comfortable in the workplace.  

We know that isn’t necessarily how it works, but in terms of, what I’m asked to talk about in this particular slide, and Grace alluded to it earlier, is, how do we change the system? Right now, I’m gonna hazard a guess, I don’t know, 20 to 30 people in the province that have maybe some of the specialty in, in diagnosing autism in adults, and I think I’m being generous there. In a population of millions, it doesn’t really make sense. Ideally, we need public systems to move into the diagnostic realm. Number one.  

And number two, we need to really look at how we provide these diagnoses. So, as Grace mentioned very clearly, there’s a step-by-step process and procedure that has to happen that covers a lot of different domains of functioning, asking others for input, specifics to mental health rule-outs, etc. And absolutely, that shouldn’t be changing. But how do we then move it into the public system to allow individuals to access to walk into a local clinic for example and walk out with the diagnosis? So, Grace and I are currently sitting on a number of different advocacy groups and mental health and autism public health committees. And there is clearly an understanding and awareness that there’s a need. And almost always it comes down to the almighty dollar. And that’s trying to find public systems that can resource the training that Grace talked about that can resource the maintaining the clinicians. I’ve worked with a couple of agencies and we’ve sent in some proposals to get some of that public funding going. The challenge has been finding psychiatrists who can do those assessments and as Grace talked about already, MSP will not fund a three to four to five-hour assessment of an individual. And so, are there other professions we can train to support it? Psychology and some other types of professions would be useful. So, it really comes down to how can we, from a top-down point of view, bring in as many people who we can train, supervise, and support. So, Grace is doing a fantastic job bringing in probably a small handful of individuals, not even per year, but just sort of working through the system, UBC, Connor Kearns is now there and starting to do some training there, we have other than that, very little sort of public training going on. So, it will require larger grants, more training opportunities, and more supports. But I think as we move forward, clearly, this talk would suggest that there is a huge need to have 20 times the number of clinicians currently that have the kind of experience that’s required for an assessment. 

B: Yeah, Autism BC, we keep a list of people who are able to provide the assessment and people reach out to us and then we’ll send that. It’s broken down regionally. The list is very small  

D: How was my estimate? Was 20 to 30 about right?  

B: 20-30 was too high. I think it’s yeah between 15 and twenty that we have. But since we’re not overseeing that body we can say, here’s a list that some of our members have sent them back in. And they’ve told us about that. So here’s people that you can reach out to. And we maintain that list based on people reaching out to our information team. Cuz our information team will receive you know more than thousand requests for what are the adult services that are available, what are the adult accessories that are available in British Columbia. So, we can share that. I don’t wanna post it publicly cuz we don’t do any oversight to it. So, people in just sending stuff a message.  

D: Yeah. And what we’re seeing in the chat is there is a significant variation in what the assessment process looks like and what the experience of those individuals are having in those different settings. So, there, you know, with children, there are very specific guidelines that we must follow in order for that family to access funding. And so we have to tick the boxes specifically. As Grace talked about in adults. It’s a bit more of the wild west in a sense and what we’re doing is we are taking the child standard guidelines for assessment and we’re moving into the adult world. But there isn’t an exact fit given that the assessment measures are normed primarily on children and they’re been outdated and they don’t necessarily some of the day-to-day functions that adult requires.  

B: Right, in your practice, could you tell me approximately how many people can come for an assessment on a yearly basis?  

D: It would have to be an estimate but I would say that probably in the ballpark of sort of 15, 10 to 15 a month.  

B: Okay.  

D: Would be on a good month and assuming that I have other clinicians that can join in. And that’s the challenge. There’s only just so many of us. And you know, we all do other things in our jobs. So we may be you know I’m doing sort of a day to a day and a half a week of assessment and then the other times it’s more therapy, which leads into the sort of the last question around if you’re given an assessment of autism what, then are those other resources and supports you can tackle and you know, and generally, in speaking in the adult world, the categories for recommendations tend to fall into post-secondary. You know, there are supports in the post-secondary world that are available specifically to autism. So, I would encourage individuals to look at that in terms of, you know, access and diversity quieter places to write exams, extra support with advocacy, the ability to have less group work. There is some sort of very clear adjustments that can be made in the post-secondary world. The other major recommendation is almost always mental health and that’s just whether that’s personal mental health, it’s relationship, mental health, and again, the number of resources in Brock, you may have a list yourself. Your group may have a list around those individuals that clinical care in a therapeutic way for adults on the spectrum. Again, likely small, growing but small.  

And then, the third criteria for recommendations is often around employment and sort of just how best to get into the employment world. There are training places in there are an increasing number of pre-employment and employment training practices and programs out there that are government-funded so that’s important and again, there can be some links to that. I’m sure Brook you’ve got some of those as well. And then if you are currently employed and I could see some in the chat is just how then do I reveal my diagnosis to my employer? Is that a helpful thing for me to do? Will it make the case for better adjustments or not and there’s it’s just a very complicated process when it comes to those next steps because there’s just such a shortage?  

B: Yeah for sure. The job placement one. I like to go to Ready, Willing, and Able because they will work with a job coach and they think of their clients as employers. Also, reaching out to the President’s Group, the accessibility of allemployers.CA has so many great resources to be able to train other professionals and other HR professionals to be able to hire inclusively.  

D: Well, and for me, my personal, but one of the challenges I encounter in the world of employment and autism is, traditionally, there has been a large emphasis on the onboarding, getting work, getting you into it, into a job process, which is absolutely critical. But there’s less attention paid to the retention, how to stay there, how to manage, how to cope, mental health supports, and that’s to me equally critical. So, I think that’s where I would foresee the next wave when it comes to employment is just really how to work on retention and help individuals to be able to thrive at the workplace rather than just get the job.  

B: For sure. Yeah, that’s a really good point.  

There was a question that came in the chat that was like, what is the percentage of people who come in for an assessment who leave with a diagnosis, putting you on the spot again. 

D: Yeah, no. That’s your job. I would say that the relative percentage is very high of individuals that will walk out with a diagnosis of autism. And I and as I’ve given a lot of thought to this and talked to Grace and other professionals is that if you are a, coming back to my example, if you are a 35-year-old woman who has lived with what we now know to be autism and you’ve had the struggles that we know are associated with being autistic and you get to the point where you are either with support or able to find the funding, set up the appointment, and get there. There’s a strong likelihood that individual has autism because that’s a big ask for someone to do. This isn’t just sort of, oh, I might go see my doctor about something. This is really a seriously big ask. So, it’s a bit of a skewed sample. I’m also in, I guess, in the community, people are aware of what we do and how we do it. So, the referrals that we get are often of those people that are being given the message that they most likely have autism and so it’s a risk to pay that kind of money, let’s be honest and the resources to take that assessment so most people wanna be quite sure and confident. 

Lived Experience

B: Okay, before we move on to open questions from the floor and I will need to be able to go back through the chat list and I did see that Joette or someone else from Square Peg has come in. I did wanna pass it on to one of our members who reached out to be able to share and speak from her experience. Shayna reached out, is a writer, a mom of three and is neurodiverse and looked for an assessment last year, I believe. We have heard from the professional lens but I did wanna hear from an actually autistic voice as well of why you chose to pursue a formal diagnosis and how was the assessment process and what the diagnosis means to you? 

Shayna (S): Great. Yes, I’ll start. Okay. Hi. I don’t love doing this stuff. So, hopefully I talk slow enough. So, I wanted to pursue a diagnosis last year because my three children were finally assessed with autism. Just a reference I have a daughter who just turned 9 and twins, Elena Girl who are seven and they all, my son was the most, you know, quote unquote obvious. Um but my daughter is both after doing some research on girls, they both displayed a lot of the traits for autism as well and they were also diagnosed. 

Um personally, I also like labels. My family doesn’t really get it but I’ve always been told I was anxious or depressed and stuff growing up and having those diagnosis having, those labels helped and so having an actual label of autism I thought would be helpful as well.  

So, assessment experience It took some time. Um it was done last like Christmas around Christmas and it was done over Zoom because of COVID. So it was a little bit easier in that sense. It took some time. I had to speak with my mother on the phone. To give me some feedback on how I was a child. That was sort of challenging to try and remember how I was as a kid and going back that far. My mom she recently passed away. But thankfully she was here then to give me a hand with that cuz my dad wouldn’t remember anything and it was relatively easy. There was a form to fill out, questions to answer, and she was really friendly and made me feel heard or listened to like I wasn’t, you know, completely crazy to think I had autism. It was expensive but I’m thankful. My family was able to help out with that with extended health and things like that. Teah, overall, I think it was a good experience. It was, it took some time. It was really enlightening a lot of things. I thought made me weird growing up. Um we’re actually because I was autistic And. it really helped kind of enlighten things for me and you know, made me realize that maybe I’m not just, you know, weird. I actually, you know, my brain just works a bit differently. So, diagnosis what, it meant to me, was, you know, to answer questions I didn’t even know I had. So, that really helped. There’s things I did as a kid that I never realized were possibly autistic traits. Um and it made my life sort of make more sense. Like I’m not just anxious. I’m not just depressed. Things that I’ve been you know feeling my whole life suddenly kind of needs it. And I got access to the DTC, the disability disability tax credit. And that was very beneficial financially. Um I’ve also applied for the personal disabilities. Um whatever that’s called, the help financially with that. I have your back yet. So, I don’t know how that’s going. Um but also having the diagnosis gives me, I have like a new sense of belonging. Like they mentioned earlier, there’s a lot of, there’s a community of autistic people out there And, you know, Facebook or just, you know, in person, it’s really helpful to kind of find other people that kind of get me, and I felt like almost sick freeing a little bit, knowing that I’m kind of, you know, a little quirky and that’s why. It’s not just, I’m super awkward or something. I just, there’s actually a reason behind it and it just helps to find other people that are like-minded and kind of get me as well. Yeah, and it was hard, like I said, with the assessment, it was hard and I think that they mentioned earlier, had to mention my work history. So, for myself, I never could hold like a full-time job. It took me a long time to get my bachelor’s degree, things like that I never were anything. I thought it was just cuz I, you know, I was screw up or I can’t do things properly. There’s a reason for it and that was, that was something that was really helpful as well to know that maybe I couldn’t complete my degree so quickly cuz of the way my brain just worked or you know, things like that. So, yeah. 

B: Thank you so much for for sharing. I know that you were sending me a message in the chat. You saw some of the questions that were that were coming up through the chat. Were there any of those that you wanted to comment on or speak to? 

S: I don’t know. I’m trying to remember so many questions. I personally found that it was worth doing, you know, cost money ‘cuz, like I said, earlier, I like labels. So, knowing, you know, quote unquote officially that I have autism and makes, it makes me feel like a lot of questions have been answered instead of just saying I mean, if they say, autistic community says that self-diagnosis is just as valid and is. But for me personally, I liked having it official, you know, so that’s why I did that. Yeah, I think it was definitely worth doing though and it’s helped too my kids all having it. So, I kind of understand where they’re coming from more and I can sort of see myself in them, especially my one daughter, and I know how better to help them now as well that they’re diagnosed and I know that I have it too and we can all kind of, I’m trying to help them not have to struggle like I did growing up.  

B: Thank you so much for being able to come today and and share a little bit of your experience with us. I do find it helpful to be able to hear from autistic voices in the community when we’re doing a lot of these presentations and I do really like the shift and the trend in people wanting to learn more from autistic voices. It’s especially with our community presentations, our information presentations, people who are reaching out, they’re like, I want that lived experience to be able to help do community presentations. As AutismBC, it’s so great to be able to have a platform to be able to highlight different voices and highlight our community.  

S: Well, I see this one question here from Shelly. I had to get my assessor. She had to actually like fill out a form for me to do it. So, she filled out a whole, you know, the whole form of Disability tax credit and I had to pay for that unfortunately, but she did all of that and that helped me, that helped me qualify for the PTC. The personal disability thing, I’ve, I don’t know, that’s, it’s the process. It’s very complicated, I was surprised. I needed to do a lot of work on my own. It wasn’t so much stuff that she had to do and then my assessor, yes, she is in BC. I live in Kelowna now. So, she’s based out of like Penticton, Kelowna area but I did over Zoom anyway so. She actually assessed two of my kids.

B: Was the process the same? For the assessment for your children and for yourself. If it was okay.  

S: Yeah, it’s pretty similar. I mean, like I said, there’s a difference. This is a little different, obviously. Mine was resume but it was pretty similar actually Um yeah, I’m trying to remember. It was a year ago from mine and my daughter is assessed in April. It’s a really recent but. I thought it was pretty similar.  

B: Okay.  

S: Yeah. It’s a little harder like for me I wasn’t really sure if I was gonna get the diagnosis but she seemed pretty happy with her result. I’d say I had it so. Um can I have one thing?  

B: For sure.  

S: I just remember that it felt really weird. I was super happy that my kids got their diagnoses cuz I was like, okay, finally, my son especially can get the help he needs at school and things like that and when I found out I had autism I, actually felt like, I don’t know, not as excited about it. I was almost, not sad, but kind of, I don’t know, bummed out I guess. I wish that I had help when I was younger, I think, and it also, label was helpful and I’m happy I have it now but I think it was hard to sort of be like, oh, okay, I am autistic and it’s, you know, it’s such a, like, I wanna try and give, you know, autistic voice is a voice. I just, yeah, that makes sense and you know, advocate for that and give autism a different view. You know, like it’s not a bad thing to have autism like the community, I find the community at large sees it as such a bad thing. Like, I tell people, my kids are autistic, they’re, like, oh, I’m so sorry. So, I wanna try and change that perspective. If I, you know, somehow. Can I say who my assessment was?  

B: Sure. Yeah.  

S: Yeah. Okay. Well, I saw Angie Rock Peters. She works out of the Okanagan Disability Center as well as I think she’s in particular as well which I think so Yeah.  

B: And we have another member, Alexandra, who shared her experience going through a self diagnosis and having the self diagnosis as valid, there is a great interview that I will share afterwards, with people, there’s a video towards that, because, we wanted to be able to highlight different perspectives.  

So, now is really the time that we have open for other questions and I will do my best to be able to come back up through the chat box to see if there are things that we have missed. What I wanted to be able to start with was asking about mixed diagnosis or misdiagnoses previously and then people coming in for a second or even a third assessment. Grace or David, would either of you be able to comment on that question similar to that.  

D: Are you referring to a second or third diagnosis assessment for autism or just a general assessment?  

B: We hear that many people will go in, and they’ll be given a diagnosis, and they’ll think that that diagnosis might be wrong, or might be coping with something else, and they might not get the autism diagnosis might, be given a different diagnosis. 

D: Yeah, in my experience, I’m sure Grace will echo, it’s exceedingly common to have someone, a particularly an adult who has you know, a good intellectual abilities, has a measure of functioning that people would see is fairly typical to not get those diagnoses particularly, if they’ve met with someone who’s a clinician who doesn’t have a lot of experience in that area. So, they’ll often be not necessarily misdiagnosed with those other things but just the autism piece is not picked up. So, it may not be a misdiagnosis to say someone has depression and social anxiety disorder because you can have that and autism but in my experience is often I do hear comments like I saw on the chat where people say, well, I went in. I had good eye contact. I have a job and I’m married with two kids. So, the person said I can’t have autism, right? We know that there, that isn’t how it works. So, absolutely, Grace, how about you? I’m sure you’re finding lots of co-occurring. 

G: Oh, oh yes, I totally agree that often it is the case that people who come to see me have previous mental health diagnosis of some kind. So, either, of course anxiety disorder is very common, depression, bipolar disorder, borderline personality disorder. So, eating disorder. So, there’s a variety of different disorders that were given at some point in time, but the autism diagnosis was missed. That in my view happens to a great extent because they the mental health piece is often done by psychiatrists and psychiatrists are not necessarily trained on what David was talking about Childhood disorders, Cuz autism is considered a childhood disorder, and it’s a developmental disability. So people who work in psychiatry unless you’re a child psychiatrist, you may not have come across autism in your training. And so the first thing that they think about is what kind of adulthood disorder is this? Right? Rather than thinking, is there an underlying developmental condition here that we’re missing? So, that’s where the training, I think, the training differences between psychologists and psychiatrists come in.  

B: Is there a bias for like male and female assessors to diagnose or assess male or female clients? 

G: well, yeah, I would say that definitely my experience has been that women are way underestimated in terms of the numbers of women who may have autism And. I think that because of social media, because of all, and also there’s a real emergence in the research world around the issue of women on the spectrum and so that’s had a big push. I think people are starting to become more aware of what autism looks like in women, but yeah I would say even just a year ago we had no clue, you know, when women show signs of autism, it can look like, you know, borderline personality disorder, right? It can look like, you know, anxiety, depression, or eating disorder is another common one. So, it can look like something else, and the professional doesn’t necessarily think autism because autism is considered, you know, for the one male, right? 

So most clinicians, even psychologists or you know, professionals who’ve been trained in autism may not think autism as a first, you know, sort of hypothesis, but we’re learning more and more now.  

B: So, for people who are in that waiting for an assessment time and they’re trying to reach out to a place that’s going to be able to do this. They’re gonna try to invest a lot of money towards going in for an assessment. Is that a question that you can ask kind of beforehand? Like, do you have experience diagnosing and assessing women cuz it’s a question that that comes to us frequently like I want to know who specializes in this and has not an overseeing body that’s overseeing any of the assessors. It’s very difficult for us to be able to answer.  

D: I think it’s a really important question and absolutely unique. That should be one of a number of questions, you know, do you have experience with adults generally but also from more specific point to be already comfortable, you know, diagnosing women on the spectrum. The, you know, we’d love to think that we are 100% accurate as clinicians and that there’s an exact science to this but there is an element of art to a diagnosis and as Grace and I and our colleagues have talked about a lot of the measures that are existing don’t really cover a lot of the key areas that we’re now seeing that are showing up and what people are calling the, you know, female phenotype of autism, you really need to craft it differently. I know as a group here in the Lower Mainland, we’re looking at doing just that coming up with a sort of a more specific assessment that would capture some of those things because yeah at the end of the day if you have autism those core features should be consistent across genders with a slightly different presentation.  

G: Yeah. and I would add based on the comment here in the chat that it’s not that we’re thinking that the diagnostic criteria would change so much. Because I think autism is pretty clearly defined and well defined as a condition much more than any other or many of the other childhood disorders, ADHD, for example. So I think we have a really good grasp on autism as a condition. But what we don’t do so well are those measures that tap into the female way that ought to (inaudible) So we can see if we have lots of experience like David and that autism is underlying the way that it’s being presented in females but the measures don’t always show that, right? So, when we give a measure the person can pass that measure like the ADOS for example because they’ve learned strategies or their concealing, you know, certain things about themselves or accommodating to people. You know, so there are different ways that the person can present that would sort of hide some of those autistic traits that we generally see more clearly in males.  

And oh by the way some of this also applies to males. So some males may have more of that female sort of style of presenting or expressing their autism.  

B: Thank you so much. I know that David needs to leave right at 12 o’clock has another meeting so I would like to thank you for preparing, for coming to this talk, for sharing and answering some of the questions from our membership and the Square Peg membership. These talks are very important for us to be able to bring people together and be able to ask questions. We will have a recording of this. I’m very sorry that the recording did not kind of work at the beginning of it. But these talks and these information sessions are so important for us to be able to have. So, I wanna thank you for your time. We did have another question that that did come in. Well, our team will try to respond to those as well and I will look at the chatbox to be able to respond to different questions afterwards.  

D: Well, thank you for setting this up. Clearly, it’s a really important topic and one that we haven’t finished yet at all.