The Validity of Self Dx Part 1
Financials can be a large factor making it difficult for an adult to get a diagnosis. Aside from cost of assessment itself there could be consultation costs as well as travel cost pending on where the nearest facility is. For example in Ontario there is CAHM, which has three facilities all in Toronto. For many this will range anywhere between a one hour to eight plus hours of driving.
The cost of gas alone can cost up to several hundred pending on vehicle, drive time, not to mention hotel costs and food costs. There is also the Redpath facility…also in Toronto, possibly the University of Guelph… Near Toronto. Lastly JVC again Toronto.
Costs across Canada seem to very from a minimum of $2000 to approximately $5000 pending on province and Facility. If one is lucky their insurance plan may cover part of it. Though for low income to middle income earners this may not be possible.
The Validity of Self Dx Part 2
The issues with the process
Now if one is actually able to afford not only the assessment but cost of travel there is the assessment itself. The assessment itself is based of the DSM5 (or whatever the countries equivalent is if you are not in a country that uses the DSM5). The DSM5 characterizes Autism as a set of deficits and strengths ( all of which are stereotypical, sexist, and racist). As in spite of the fact there is evidence to the contrary and the fact that autism itself has no gender, autism is still strongly believed to be something that affects white males more so then females, transgender people (if transgender is now not recognized as an inclusive term please leave a comment), or black people, indigenous people, and other people of colour.
This means there is a large risk to even get a doctor to even consider the possibility of an assessment. Many tend to be very ableist themselves and may not even consider assessing someone based on consult alone.
This is from the CDC as to what criteria is followed has part of the assessment.
Now if one is able to get someone to listen another part of the assessment may involve the assessor contacting someone who was involved with your upbringing. For many who’ve had very toxic upbringings this may not be a possibility without risk to their own mental well being. Then for those who decide to risk it, they run further risk of the person lying to the assessor at worst or being ableist at least. Just that very thought alone can be anxiety inducing. We shouldn’t have to contact possibly toxic people about our childhood. The process should be updated to include what to look for in adults who’ve gone undiagnosed.
The Validity of Self Dx Part 3
The blatant racism of the medical community (sexism, fatphobia, transphobia)
Now as a privileged white person I personally do not experience the racism faced by those who are non white from the medical community. I know it exists and it needs to be changed. I know I need to use my privilege to raise the voices of Black people, Indigenous people, other people of colour, while not drowning them out. When to collect my own and when not to. These are lines that I personally struggle with. So since I am not as experienced with this I implore you to follow these pages to learn more about this particular intersection of disability and race (not all are strictly autistic) can be found on facebook twitter and some on youtube.
Autistic, Typing (Has a more extensive list of other BIPOCs to follow)
The Black Autist
Black Girl Lost Keys
Not This Black Woman – Cle’Tse Searle
Angry, Asian, and Autistic
Yenn Purkis Neurodiversity page
Then there is the sexism. If you are not male your concerns are less likely to be listened to. If you are fat you are less likely to be listened to. I have heard that those who fall under the Trans Umbrella also experience such things. Again I myself can not attest to their issues they face when seeking medical aide or even a diagnosis. A few of the advocates I have named share their experiences on their pages. There are several others that I follow though the page names currently escape me. Will update when I figure out those pages.
Now to an experience I can speak on. I am fat and I am a woman. Trying to go to my doctor about things personally has on some days been a gaslighting experience. Occasionally once I’ve advocated for myself my doctor will actually listen, but rarely the first time. Many time’s I’ve had to demand for testing to be done and only after I’ve researched into stuff thoroughly. It’s exhausting. Like they’re the doctor, they should be able to and more willing to give answers or help you seek them. It all comes back to my weight and the fact he did do a general anxiety test on me and diagnosed me with general moderate anxiety.
So just imagine the problems of trying to get an Autism diagnosis or even a referral to a specialist to get an Autism diagnosis. Unless you get lucky enough to find a decent doctor. This ends up being a huge fucking road block.
Validity of Self Diagnosis part 4
It’s not for shits and giggles. (Link to part 3 in comments)
Those of us (or at least most of us) do not self diagnose lightly for shit an giggles. We do so after seeing ourselves in Autistic loved ones. It starts the ball rolling. Gets us thinking, and while on that journey with our loved ones, we may get lucky. Lucky enough to stumble has I did across the actually autistic community.
Lucky enough to stumble across bloggers and advocates willing to share their experiences. This makes things click into place. Then the deep dive down the research hole begins. This is often the first step for many leading up to seeking an official diagnosis if they are able to.
It takes time some months others years before they accept the possibility. Its no where near just a quick “dr. google” search. There is also the fact unless knowing exactly what to look up, all the sources that tend to pop up first are steeped in ableism. To deny those seeking answers agency in regards to identifying has autistic makes you part of the ableism problem.
I’m looking at you Connie Manning (or as you are becoming to be know Connard Manning), of Conversations with Chevy, and you Fiona O’leary of Autistic Right Together. Both these people are part of the ADW. Possibly several other advocates some whom have gone through this process themselves and were diagnosed later in life also deny us. Which on top of being ableist, is basically a giant contradiction for them to deny our experience.
Our selfdx takes nothing from autistics with official diagnosis. Without an official diagnosis we do not get access to what supports are available for adults which is very few. It does put us in a unique position to help those who have an official diagnosis and are out about it have their voices heard in places where they may get overlooked. What we also gain is a sense of community has most in the Autistic community accept us and support us to the best they are able.
Even many of those in the Autism community (parent’s, caregivers, other support teams, and allies) support us. Granted every community has a sect that is extreme and those extremist’s in our community tend to have a lot of unaddressed ableism.
The very idea that we do this essentially for shits and giggles is absurd in and of itself. Look at the ableism the Community face’s as a whole. Whether they’ve addressed their own internalize ableism or not, the community as a whole, faces so much ableism from the NT world. Why on earth both NTs and some Autistics think anyone would fake being Autistic is beyond me.
We don’t choose to be Autistic, like with many integral parts of ones Identity, we are born this way. In the case of being Autistic an official diagnosis can confirm and be validating in its own way if one is able to get it and open up possible access to supports. Though even those with a diagnosis struggle to find accurate support and accommodations.
For the purpose of finding a community who can relate to your struggles a self diagnosis is just as valid to many who understand just how much of a privilege and actual diagnosis is. There is so much time that goes into the researching. So much time listening to Advocates who’s stories resonate so much it makes us wonder. While logically we know autistic children become autistic adults it takes time for those who’ve gone undiagnosed our who lives to accept that yes we are undiagnosed Autistics.
To the Advocates who accept us. Thank you. If not for you sharing your stories, some of us may never have understood ourselves.