I think my aunt (60s) has autism but is afraid to get tested. I’d like to make it as easy as possible for her. she has aetna insurance (medicare)
I don’t mind paying costs out of pocket - I just want her to get help. But I am overwhelmed looking for a place to start.
Has anyone done this? Where should I begin?
Depending on your location and how much support her type of Autism requires, it may or may not be possible and/or worthwhile. For reference, I was in my early 40s when I started to consider I had it (it has been known to be in the family) and I live in a major city, though not one of the largest ones in the US.
First, there are few providers who are willing and able to provide a diagnosis for an adult. The methods for doing it is not well known or tested. It was thought in the past that the type of autism that used to be called “high functioning” or now are classified as low support need, actually went away with age. Turns out the people just masked and developed coping mechanisms. And the older a person is, the more difficult it is to diagnose due to the coping mechanisms, masking, and the symptoms having other possible and more statistically likely causes.
Second, there’s no standard treatment available for adults with this type of autism. Arguably, the treatments for children aren’t effective either considering they basically just teach the few kids who are diagnosed and treated how to mask.
Finally, the testing for it is extensive and costly. And since there are few providers and it’s so difficult, many of those providers are booked solid and have no need to accept low paying/high cost to bill insurance. So finding a provider that is both locally available and in your insurance network is generally extremely difficult and even if you find one, likely to have very long wait lists and probably still require significant amounts of money for tests that insurance doesn’t cover as well as coinsurance and deductibles.
So, I’ve personally given up on a formal diagnosis. There is a university-associated office that has a couple of providers who do it in addition to treating children and are in my network, but the wait-list is about 5 years to get an initial consultation. But my therapist and primary care provider treats me as if I do have it even with the self-diagnosis as they know how difficult it is to get a formal one. Also, my friends who have Autism always thought I did and thought I knew I did, so that is what stared me thinking about the possibility. And it turns out neurodivergent people tend to find each-other as they find it easier to make friends with other neurodivergent people, so it’s a good indicator that if a bunch of your closer friends are, then you might be too. 🙂 And friend support and tolerance of your differences is more important than anything, IMHO.
And I’ve also always worried that a formal diagnosis may or exclude me from some things in my future like employment or immigration or other things that behaviorally disabled people can be excluded from legally, so for me, it’s never been worthwhile. But if you’re trying to get her some kind of disability benefits, that may not be a concern for her case.
Not trying to disuade you, just want to give the things to consider while mentioning why I chose not to. I did get a formal ADHD diagnosis because it is treatable with medication, but since autism isn’t, at least not yet, it just never was worth the time, effort, and cost for me.
You don’t want your aunt on a list of people with autism in this political climate.
I received my diagnosis through Prosper Health. I’m on medi-cal and unfortunately had to pay out of pocket, but I believe it was worth it ($950). It was 3 online sessions - 2 for assessment and 1 to go over their diagnosis, reasoning, and next step options. The doctor assessing me was so kind and patient, and the assessment and results were very well presented.
At the end you’re given a copy of their assessment (many pages which detail how your answers to their questions tie into their diagnosis), a simple one page official diagnosis that you can provide to employers, other healthcare providers, or resources that might need one, and a signed note that you can give to employers asking for certain accommodations.
Part of their process is providing the name and email of two people in the person’s life who will be sent a questionnaire that asks them questions relating to autism. You are supposed to allow them to answer the questions without telling them what it’s for to avoid bias. Ideally they request one person who has known them since childhood and another who is close to them now.
Not sure whether this is a starting point, but I’d start with a screening tool with research backing like this one.
https://embrace-autism.com/raads-r/#test
There is good predictability with this, and in my experience will let you know whether a person would likely meet criteria for diagnosis.
As far as a diagnosis, you’d have to find somebody who has experience in that sort of thing, which may be challenging considering most people are diagnosed as children. I would do a web search for autism assessment and just be prepared to call and ask questions. You may end up connecting with local mental health places that don’t offer the service, but often mental health providers are aware of other services in the area if they don’t provide them themselves. (Ie, if the places you call don’t do autism assessment for adults, there is a fair chance they might know who in the area does)
I don’t know how Medicare works there, but I’ve seen some people say it’s THOUSANDS for an asd assessment. I wish your auntie luck in her endeavours.





