Season 3, episode 4 is here: What to Consider When Seeking Adult Autism Assessment.
Are you ready to navigate the intricate maze of adult autism diagnosis?
I dedicate this episode to offering tips and advice to help you determine whether autism assessment is right for you, suggestions on how to find a psychologist who conducts adult autism assessments, and brief strategies on securing financial support if you can’t afford the exorbitant assessment fees.
This episode is designed to be a supportive companion on your quest for answers.
If you’d like to know more about topics discussed in this episode, check out:
Transcript
Kristen Hovet: 1:06
Today I have some tips and advice covering adult autism diagnosis, whether you should seek diagnosis in the first place, how to go about finding an assessor, usually a psychologist who specializes in autism, and a few tips if you can’t afford paying for the assessment.
But before we get into that, I have some announcements. First of all, I’d like to thank the newest sponsor of The Other Autism podcast, Ambrose. Ambrose, I really appreciate your support and, for anyone else interested in becoming a sponsor, if you find this podcast useful or meaningful to you, please check out the show notes for links that say support the show or become a supporter of the show for as little as $3 a month. If you would prefer a one-time show of support, there’s also a link in the show notes to buy me a coffee. For the price of a Starbucks, you can support the show and help keep the number of ads to a minimum.
Okay, so before we start, just a reminder that I’m coming at this topic as an American-Canadian living in Canada. I’m far more familiar with the Canadian system when it comes to autism assessment. But that said, there are many similarities between the US and Canada, and between Canada and other countries, for that matter.
One of the most common types of questions I receive from listeners involves, number one, whether or not to seek adult autism diagnosis, and number two, tips and advice on how to go about doing so in terms of finding an actual assessor. In most cases, so that we’re all on the same page, an assessor is usually a psychologist, but could also be another healthcare professional who’s academically qualified, certified, and or officially registered to assess individuals for autism. This is very important to mention because some people may advertise that they can assess for autism, but they may not be officially registered to do so, meaning any diagnostic opinion they give would not be legally or medically recognized. This varies from country to country and from location to location, so be sure that the person has the correct credentials for your particular state, province, or country.
I have covered variations and aspects of adult autism assessment before in past episodes of The Other Autism podcast, especially in two episodes that you can have a listen to if you haven’t already. They are called Adult Autism and My Diagnosis Story from September 6th, 2022, where I dig into my own experience, and the second episode is called I Was Diagnosed Autistic, Now What? That’s from April 8th, 2023, where I touch on my own experience a little bit and also look at some of the research focused on adults post-autism diagnosis.
In addition to discussing whether to pursue diagnosis and tips and advice on finding an assessor, I also intend to talk about some strategies when you can’t afford diagnosis. This last topic was inspired by a suggestion from the Season 3 survey, so shout out to that anonymous survey respondent for the suggestion.
My Autism Assessor
As I promised in a previous episode, since I’m asked this question so often from listeners in my province of British Columbia, I thought I’d say it here. The person who diagnosed me was Dr. David Worling. His last name, again Worling, is spelled W-O-R-L-I-N-G. Dr. Worling is a psychologist and director of the West Coast Child Development Group and the Spectrum Works Consulting Group, both based in Vancouver, British Columbia. Dr. Worling has academic affiliations with both Simon Fraser University and the University of British Columbia and he has stayed up-to-date with the latest in autism research. I found Dr. Worling to be super knowledgeable about the lesser-known ways that autism can present, and I’ve also been impressed by presentations I’ve seen him give online regarding autism in a variety of age groups.
Should I Pursue Autism Diagnosis in Adulthood?
Now, should you pursue diagnosis? This is completely up to you and is really such a personal choice. I don’t feel comfortable telling any individual if they should or should not get diagnosed. So for those who’ve reached out to me about this, you’ll notice I tend to bounce the question right back to you. What do you think? What do you hope to get out of it? Are you the type who needs the confirmation from a specialist? I know I’m that type of person. I need to know. Self-diagnosis just wasn’t enough for me and I lucked out in having about a quarter of the cost covered by my medical at the time. My current medical coverage would have paid for at least half of the assessment, but unfortunately I didn’t have that back when I was assessed.
Due to increased demand and a shortage of assessors, which I think is an almost global problem at this point, the cost for assessment has gone up quite a bit, even since I was diagnosed a few years ago. So keep that in mind as some may want to secure an appointment before costs rise some more. Costs unfortunately seem to be on a steep upward trend and I don’t know if that’s going to be ending anytime soon. Even in Canada, where we have quote unquote universal healthcare, adult autism assessment is one of those services not covered by our healthcare system. It’s sometimes covered in part or in full by some employee benefit programs, but those vary quite a bit, from my understanding and experience.
So, to get back to this question of whether to get assessed, ask yourself the following three questions and consider making a list of pros and cons. What would such a list look like? Well, if you haven’t done one before, take a sheet of paper, draw a line vertically down the middle. On one side of the line write pros of getting an autism assessment and on the other side of the line write cons of getting an autism assessment. Then start to write points on each side. These types of lists are easy to do and may seem like really overly simplistic, but they’re actually pretty helpful. It’ll help you reflect on your motivations and your worries regarding seeking an assessment, and sometimes you can decide based literally on the number of points you have in each column.
Question number one to ask yourself: Do I have the energy and am I in the right headspace to pursue assessment at this time?
The process of finding a psychologist who is knowledgeable in adult autism and level-one autism especially, which is formerly called Asperger’s or the dreaded high-functioning autism term, is now called level-one autism.
So to find someone knowledgeable in that area, setting up the appointment, wrangling others who typically must be involved in diagnostic interviews, such as parents and a spouse, partner, or friend, actually attending the assessment interviews and filling out the diagnostic paperwork, and then waiting for the results appointment, and then attending it, are all quite taxing, potentially very stressful, and take a lot of energy. I know it took a lot of energy out of me and even once I got the results, processing that took a lot of energy as well. Even though it was a relatively positive experience and positive time for me, it still was very draining, so keep that in mind.
Also, the assessment interview itself can be triggering, depending on your own life history and your experiences. Not that triggering is necessarily a bad thing, but we all have varying capacities and comfort levels and sometimes being triggered at a particular time in our lives is just not a good idea. If you are in a place in your life where you’re experiencing a lot of change or turmoil or you just aren’t feeling very settled or balanced or like you can’t handle anything else in your life, my suggestion, generally speaking, would be to think about waiting a bit till you feel like you can cope with these things. Now, just like with any other big and potentially expensive decision, there’s not ever a perfect time. There are better times.
Question number two to ask yourself: Does a diagnosis actually matter to me? If so, why?
As I briefly mentioned before, everyone is so different when it comes to this question. Some are satisfied with self-diagnosis, also called self-identification as autistic. This was covered in a previous episode titled Leslie and Autism Self-Diagnosis from February 4th, 2023. If you haven’t already heard that one, I’d love for you to give it a listen.
For many people, they feel they’re at an age where diagnosis would not have any meaningful impact on their lives. For these folks, they may be retired or approaching retirement age, and or they just don’t see how a diagnosis would help them in the way of accommodations or similar.
Many undiagnosed autistic folks have actually already negotiated accommodations with their employers without having to disclose any diagnoses and by just communicating their needs and preferences. These folks are the lucky ones, to be sure, but there are a surprising number of employers out there who are willing to work with their employees to ensure comfort and the best working environments for the individuals on their teams. These are usually employers who place a high value on empathy and also tend to be up-to-date on evidence-based practices and best practices in general when it comes to supporting employee health and wellbeing.
Similarly, these are the employers who do not require disclosure of diagnoses to ensure what I think of as a basic human right, and that is facilitating a work environment that leads to the best productivity. This will differ widely from person to person, and for autistics and other neurodivergent folks, sensory issues can make it very important to work in a quiet environment with little distraction, and the ability to control various sensory stimuli.
Seems super obvious, but I’ve also heard of the exact opposite, where employers expect everyone to work in the same cookie-cutter type of environment, typically open-concept offices these days, which are excruciating for most of us on the spectrum, and or employers who require invasive disclosure of any and all diagnoses just for the most basic accommodation. This is totally backwards, of course, but surprisingly still happens in 2023 in North America in far too many places of work.
All that to say, for many of you, especially those of you already working, your decision to get an official diagnosis might depend very much on factors related to your individual set of work-related and professional circumstances. If you’re fighting to get basic accommodations, a diagnosis might be helpful for you.
Question three to ask yourself: Will my work and or medical benefits cover my adult autism assessment?
This will require asking your manager or supervisor or HR questions if you don’t already know, or digging into your policy paperwork to read the fine print or details that you may not have read yet. And if it’s covered, how much is covered? Do you have to pay a deductible first? If you haven’t heard this term before, a deductible is the amount you have to pay before your insurance or benefit plan kicks in to start to pay for the medication or health-related service in question.
Be careful here because if you start asking questions, you’ll basically be giving information away about yourself. Do you want to disclose this information, even to HR? I mean, everyone’s different. For me personally, I had no problem disclosing this to anyone in my organization, but that’s just me. Everyone has vastly different comfort levels, and that’s 100% okay. Also, our comfort levels can change so much from year to year, based on many, many factors, including the support we have or don’t have from our loved ones, friends, or associates, and the general political or social vibes we’ve got going where we live. Some places are just more open-minded and more accepting of difference, and in other places it’s legitimately dangerous to be different.
Again, wherever you’re at is 100% okay. We shouldn’t judge each other or be harsh with one another regarding our comfort levels in this regard. Some of us shout it from the rooftops and others want to keep it to themselves or only share with one or two other people on the planet. Any comfort level is okay and no one should be pressured to either disclose or stay quiet.
I hope these questions help you get thinking or provide a bit more clarity as you’re deciding on whether to seek an official autism diagnosis.
Now I’d like to move to the second part of this episode, which is covering tips and advice on finding an autism assessor, and also strategies when you can’t afford assessment.
Tips and Advice on Finding an Autism Assessor
I’ve already talked about ensuring that the person, usually a psychologist, is qualified, that their diagnosis will be legally and medically recognized where you live and work. In many parts of the world, a diagnosis from someone who’s out-of-state or out-of-province is not recognized in your state or province. In other words, the assessor usually needs to be located in the same state or province as you or they need to be licensed in that state or province.
I know of many psychologists in California, for example, who are licensed in additional states, such as Nevada and Oregon. This means they can conduct assessments virtually and their results will be valid for clients, whether these clients are located in California, Nevada, or Oregon, in this particular case. I even know of some psychologists who literally travel to do in-person assessments in different states and, in addition, do the virtual assessments. So you definitely want to check on that. Not all psychologists are very clear on their websites where they’re licensed. Most of them are if you read the fine print and the details, but some of them you’ll have to actually reach out and ask. So be sure to find someone qualified and licensed in your particular state or province, even if the assessment is done virtually.
I think an in-person assessment is usually best because the assessor might have a better view of your body language and other things about you they may not notice in a Zoom call, but I know in-person is not always possible.
Some states literally have no one available who’s specialized and licensed in adult autism diagnosis. Sometimes they are there, but their waiting lists are just too long that they have just stopped adding people to their waiting lists. Luckily, COVID has led to a greater number of assessors getting licensed in a variety of states or provinces, so there are usually options out there. It just takes a great deal of searching to find those options.
I have heard of some who find assessors the first day they start looking, so don’t necessarily assume this process is going to be difficult. It’s easy for some, relatively fast, depending on where they live. Other times people are referred by friends or family and this is usually a good option because you can hear what their experience was like if they’re open to sharing, which can greatly inform your own decision to go with that particular assessor.
Other practical suggestions, number one, many autism assessors advertise that they work with children, but this is starting to change, as society as a whole has recognized the problem of just how many individuals have slipped through the so-called diagnostic cracks and have missed getting diagnosed in childhood. This means more psychologists are getting trained to assess autism in adults, more psychologists are specializing in adult autism, and autism diagnostic tools are improving slowly but surely.
That said, depending on where you’re located, finding an assessor who’s legitimately well-versed in adult autism can be quite challenging. Even if you find someone and their website says they have this knowledge and ability to diagnose autism in adults, that doesn’t necessarily guarantee that they’re actually using up-to-date information or that they have recent training. This means you might need to actually email or call around and speak with the assessors to gauge their knowledge.
You could ask them questions such as, have you heard of the female autism phenotype and what do you think of this term? Knowledge of this term, while some people cringe at the term, typically means they’ve had recent training and have been reading recent articles in medical journals covering the latest in autism research. This is just one of those terms that have been thrown around a lot in the last, I don’t know, I want to say five years or so. So if they know that term and if they can define it very clearly, it’s typically a good sign.
You could also ask them, what assessment tools and questionnaires do you use when assessing adults? Then go and research these tools and try to find how well they’re received in the medical and autistic communities.
Number two practical suggestion: Join or consult some very, very local autism organizations, in other words, autism organizations based in your city, county, and or region, as they may provide free advice, recommendations, and helpful information unique to your province or state and maybe even to your neighborhood. They will often have the very best and most up-to-date information regarding the availability of assessors, the types of coverage potentially available to you, and other very helpful resources that can also be of use to you once you’re assessed and receive an autism diagnosis.
There are also national autism organizations that can be helpful, but it’s less likely that these national autism organizations will have local knowledge that I’m referring to here.
Number three, if you have a trusted primary healthcare provider, like a family doctor, who you know has excellent information on autism assessors, you can consider asking them for a referral. I’ve heard the worst stories from people pursuing this route, however, as they’re often referred to assessors who specialize in pediatrics and may not have any current knowledge about autism and the various ways it can present. And what I mean here is specifically level-one autism and high-masking autism. This can lead to a substantial waste of time and resources and even medical trauma for some.
While this certainly doesn’t speak to the majority of assessors out there, I’ve heard of assessors laughing at people or making hurtful comments about it not being possible that they’re autistic because they have a job or they can make eye contact and other choice ignorance.
I personally would not want to risk relying on a primary healthcare provider’s referral. It’s like playing assessor roulette. That said, there could be some unicorn family doctors out there who know their stuff when it comes to adult autism, maybe even some autistic doctors who are all up-to-speed on what we’re looking for in a credible adult autism assessor. That would be like the most perfect situation.
And number four, as I briefly mentioned already, ask around, if you’re comfortable. Ask others who you know have been recently diagnosed, of course, if they’re comfortable sharing with you who diagnosed them. They may not be comfortable sharing this information and you have to be ready for that response. And, again, it’s totally okay if they want to keep that information to themselves.
If you don’t know anyone recently diagnosed in your area, in your friend group, consider joining an online forum or social media where you can ask around there. Some forums have conversations sorted by region or concern so you can join anonymously and ask, for example, I don’t know, anyone live in Florida who had good experience with an adult autism assessor and can recommend? I don’t know, something like that.
All told, while it can be indeed daunting for many, there are very well-trained, empathic, and knowledgeable assessors out there who specialize in adult autism and are waiting to help you.
A general suggestion I have is to take your time, whatever that means to you, and try not to put pressure on yourself to get the diagnosis as quickly as possible. I mean, some of you might be in positions where you do actually need an assessment very quickly, if certain accommodations require this, for example, but I think most folks don’t require being in a rush. So really take it easy, go slowly, make an informed decision.
Tips if You Can’t Afford an Adult Autism Assessment
Okay, so the last part I wanted to talk about, what if you can’t afford an assessment? What are some ways to get support or fund assessment? Now, again, this will differ quite a bit from region to region, country to country, because some cover it fully, like it’s not even a question, and others charge and it’s expensive. Here are some general bits of advice. I tried to keep it high level as much as I am capable:
Ask assessors if they offer low-cost or sliding-scale assessments. Centers that offer low-cost or sliding-scale options typically provide assessments based on income level and personal circumstances. They may also have trainees or supervised assessors who have lower rates. Some centers may also have payment plans, so you don’t have to pay the full cost up front.
For those who don’t yet know, adult autism assessment typically costs anywhere from a couple thousand dollars to as much as seven thousand dollars. It could even be higher since the last time I checked on that. Most of us can’t afford that all at one time, so a payment plan that doesn’t accrue interest would be very helpful for many, many folks. And again, I don’t know if all psychologists advertise that. I think it’s something that you typically have to ask. I have seen some websites where they advertise sliding scale, but most of them won’t post details about what that actually looks like, so you do have to have some conversations that might — I know a lot of people don’t like talking about those things — but it’s just one of those things you’re going to have to do if that is an issue for you.
Number two, if you’re considering switching jobs or accepting an employment offer, be sure to ask if the health insurance plan for that organization covers autism assessments for adults, if you’re comfortable asking. Alternatively, ask if you can see the health insurance documents and or speak with HR personnel in confidence about this before giving your decision.
Keep in mind that many places of employment will have restrictions that cover when coverage kicks in. You might have to work there for three to six months or even longer before you’re eligible for medical benefits. Definitely be sure to find this out since not all employers are great about ensuring their employees know what’s covered and what’s not. They may also use confusing language in the policy paperwork that doesn’t spell out autism assessment. They may have language about diagnostic procedures or tests or psychological instruments or inventories that mean nothing to the average reader, but which signify that an autism assessment would indeed be covered in full or in part.
Number three, if you feel safe and comfortable to do so, consider telling your family members and friends about your plans to get an assessment and see if they’re interested and able to help fund this.
Lastly, ask around and contact various organizations, especially nonprofit autism related organizations, to see if they have any funds available to cover autism assessments for those experiencing financial hardship or if they know of other organizations that do. There’s a lot out there that’s kind of difficult to find by doing just a standard internet search, so this often takes emailing around or making the often-dreaded phone calls.
I really hope this has helped. If you have any tips I’ve missed that you’d like to share with listeners, maybe things that have helped you in this process, please reach out and I’ll be sure to share your tips, if you’d like me to, in an upcoming episode. You can have your tips shared anonymously or, if you prefer, I can just state your first name. As always, my email address is in the show notes.
The Other Autism 