My Autism Diagnosis Experience

For anyone curious about the timeline and cost of my autism assessment - this is in the northeastern US, at a non-profit organization in my city. They took my insurance. Your results may vary greatly!

4-5 September 2023 - I reached out for the first time through email to the office of the organization. I got a reply the next day, and I sent my insurance information over.

8 September 2023 - I reached out via email due to not hearing back from the office for several days; no reply.

18-19 September 2023 - I reached out via email again, asking where I am on the waitlist. I got a reply the next day - this was the intake packet, which was several questionnaires asking me to self-report on things like autistic traits (the AQ) and social anxiety. My partner helped me with the questions because I found them a bit difficult. I sent the intake packet in the evening of the 19th.

27 September 2023 - The office asked me to schedule an appointment. The earliest appointment they had, and the one I chose, was on 19 October.

19 October 2023 - I had my first appointment, an intake appointment, with a social worker via video call. This was an interview where the social worker asked me a lot of questions about my childhood, my current struggles, why I am seeking a diagnosis, etc. There was also another person on the call who was being trained. This was also my first bill for the diagnosis - about $200

(I had a couple appointments for the in-person evaluation scheduled in February and March, but I had to move them back due to work obligations)

9 May 2024 - I had an in-person evaluation at the organization's office in my city. This consisted of some time alone filling out more questionnaires (in addition to autistic traits and social anxiety, other topics included obsessions, compulsions, and trauma). After I finished with those (again, with my partner's help), I was called into an office for my assessment with a psychologist - a version of the ADOS-2 meant for adults with verbal ability. The doctor was accomodating of my sensory difficulties (she turned the lights down for me, and apologized for the distracting noises in the hallway). My bill for this was split into two parts: about $100 and almost $600

13 May 2024 - I did an additional interview with the psychologist via video call - she had some more questions about my childhood memories and current struggles that I attributed to autism. I have not gotten a bill for this yet.

10 June 2024 - I had my results appointment via video call - the doctor confirmed my diagnosis of autism spectrum disorder, talked me through her observations of me during the in-person evaluation, and provided some suggestions for therapy. This was a verbal confirmation, but not a written one; I had the diagnosis but not the paperwork. The doctor said that she would have the report for me soon, within several weeks; but she did not confirm when exactly that would be. The bill for this was about $40

18 June 2024 - I reached out via email about the status of my report, but got no reply.

22 July 2024 - After over a month of no contact, the office let me know that my report is finished and available for me to read and download.

7 August 2024 - I received a final discharge form from the organization, confirming my diagnosis of autism (and a previous diagnosis of major depressive disorder).

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Takeaways:

- The report: I'm not going to post my entire report here, but I will include some highlights:

The report starts with some demographic information (who I am and where I worked). My reason for seeking a diagnosis is that I have noticed social problems, especially at work, that cannot be attributed to anxiety and depression.

The report elaborates on my conversation style as I described it in the intakes - that I have trouble initiating and continuing conversations, staying on "appropriate" topics, going "off-script", and speaking at an audible volume. It also includes my preference for one-on-one conversations, my difficulty recognizing complex emotions in myself and others, and my delayed reactions when confronted with an emotional interpersonal situation.

The report discusses my childhood characteristics of communication - bluntness, particular interests, parallel play, and discomfort. The report says I "played with toys appropriately as a child", though I'm pretty sure I said the opposite - that I'd stack and sort, repeatedly, instead of playing games according to the rules. I'd also be confused when my peers engaged in imaginative play - when we played "house" at recess, they designated me the "Dad", which meant they would leave me alone for a bit and I could wander around, alone, and eat dandelions.

Next is a section about repetitive behaviours and restricted interests. I reported a strong preference for precise timing, and a feeling of malaise when there are deviations from the schedule. I said that frequent changes, or major changes, can make me feel irritable and tired, even if I seem to be adapting.

The next section is about sensory issues - especially concerning repetitive mechanical noises, lights, and unexpected touch. Then comes a discussion of my emotional disregulation - I frequently spiral into anxiety, panic attacks, meltdowns, shutdowns, and depression, sometimes over environmental things that are completely out of my control.

The next section is evidently about what I would define as autistic meltdowns, though they're called "externalizing behaviours" in the report. These include my habits of shouting, hair-pulling, throwing things, breaking things, and hurling my hands, head, and body against walls. I do not, however, take out aggression on other people, their property, or animals.

Adaptive skills are covered next - the report says that I can generally feed myself, clean myself, and arrange my own transportation; what it fails to mention is that I go through periods of depression and sensory overwhelm and those skills can disappear for months, to my detriment and financial cost.

The diagnostic and psychiatric evaluation comes next. The load of screening tests I took show up, along with brief discussions of the results. Then, the results of the ADOS-2, Module 4 - I am not going to describe the ADOS-2 test in detail, because if a reader understands how a clinical examination expects them to behave in advance, their own behaviour can change, which can interfere with the results. I will say, though, that I found it bewildering, which I think is the point. It's composed of tasks and hidden tests that allistic people generally find easy, and autistic people generally find difficult. It's not the sort of test that one can study for.

Lastly is the final summary (the above information, put into one paragraph) and diagnosis.

After that, there is a list of resources - therapy, employment, benefits, and education, mostly local to my city.

- Cost: The total cost, as of 8 August, with insurance, is around $940. I will update this as I get more information (like more bills, and how much it would have been without insurance). One of the frustrating things about the autism evaluation process is that I had no idea how much I was paying until after the appointments. But if I had known how much it cost, I think I still would have gone through with it. I was prepared to spend perhaps $2000 maximum for the official diagnosis, peace of mind, validation, and resources.

- The organization: Whether I was at in the office or on video call, and whether I was with the social worker, office staff, or psychologist, I did not perceive that I was severely ill-treated at any point. That said, I did feel that communication was poor at times - you can see above the gaps between appointments, which were often filled with polite but tense emails on my part, asking when my next appointment would be. I don't do well with uncertainty!

Without revealing too much about this organization, it, like many other autism organizations, is criticized online for lacking consideration of adult autistic people, autistic people who aren't men, and autistic people with other diagnoses like mood and personality disorders. As an adult, female autistic person with a mood disorder, I didn't perceive any discrimination. But I think that if I weren't diagnosed with autism, I would have attributed it to bias within the organization and within medicine as a whole - certainly a factor, but evidently not influential in my case.

- The stress involved: Inevitably this was a stressful process for me, because making appointments, talking to strangers, and adapting to unpredictable changes in routine all cause me stress. The process did not feel overwhelming at any point, though (probably because the rest of my life is overwhelming right now). Several times, I found it difficult to compose and send emails, so I had my partner and my mother write the emails for me. I also had to make a couple phone calls, but the office staff was very understanding, and repeated themselves/clarified when I asked them to.

Generally, the process was easier than I had expected. Before reaching out to the organization for the first time, I had read some anecdotes and gleaned a lot of my expectations from there, but many were disproven. One of these was that I would have to schedule an interview with the doctor and my parents. Surprisingly, my parents were not called in for an interview, and my description of my childhood was accepted. I also was not diagnosed with a random, ill-fitting personality disorder in the autism evaluation process. Lastly, I did not have to wait several years for an appointment, as people in the UK often have to do.

- Next steps: As for therapy and skills training, I am not able to continue with those at the same organization (for some reason unknown to me). But I did get a list of resources with my paper report.

What is more important, though - something that I'm trying to realize, and that the supportive people in my life already know - is that what matters more than therapy and skills training are my self-concept - basically, how I think about myself; and self-worth - how I feel about myself. Whether I think of myself as an inherently bad, good, or morally neutral person. Whether I blame myself for things I cannot change (or excuse myself for things I can change). Whether I feel worthy of existing. Whether I think I deserve help.

These are things that a diagnosis is not going to change overnight. But the diagnosis is a very helpful, and quite official, evaluation of myself that doesn't come from me, or someone who is my sycophant (as an etymology digression, the word has an opposite meaning in Greek than it does in English, but both definitions share the meaning of insincerity).

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