Autism Interview #168 Part 1: Aria Sky on Late Diagnosis, Self-Diagnosis, and Barriers to Diagnosis

Aria Sky is a late-diagnosed Autistic mother of four. She blogs at Mamautistic on a variety of her personal experiences as an Autistic adult. In Part One of her two-part interview, Aria shares her path to diagnosis and how that process differed from the diagnosis of her children. She also discussed common barriers to diagnoses and ways to make access to a diagnosis more equitable.

What led you to pursue a diagnosis as an adult?

For me seeking an official diagnosis was mainly about needing outside confirmation and validation of my own suspicions because my own self-doubt was very strong. 

The more I read about life experiences from various Autistic perspectives, the more I realized I related to those experiences. Throughout my research, though, I had a nagging worry that maybe I was just so desperate to relate to other human beings that I was somehow making up my memories. I worried that the feeling of relatability I had towards other Autistic folks’ experiences was also just something I was making up. I had never particularly related to any human being’s experiences prior to reading Autistic people’s writings, and it didn’t seem possible to relate to other people’s experiences that intensely. 

Generally in shows and movies I’ve always related more to aliens and robots (primarily represented by Star Trek’s Spock and Data when I was very young) than to any of the human characters. Then in high school when I read pop psychology books in an effort to learn more about people and to try and understand their (often baffling) responses to me, it felt almost as though I was studying a different species. The people described in books were different — their reactions, needs, and motivations were not at all similar to my own. So when I started reading Autistic-written blogs and books I had a difficult time believing that I was actually relating to other people’s experiences as strongly as I seemed to be. That level of feeling understood and of understanding others didn’t seem possible.

For most of my life, I’d had my lived experiences questioned and belittled, even to the point of being punished by adults (as a child) for alleged misbehaviors when I had no idea I was doing anything wrong, or when I was simply distressed from sensory overload or from being misunderstood. One of the results of not having my lived experiences validated by the other people in my life is that I constantly questioned my ability to gauge my own experiences. My experiences seemed to be so different from other people’s and I eventually gave up on finding relatable experiences — I was just different and that’s all I knew.

But after getting an official diagnosis I could be certain — I wasn’t making it up! I really do experience the world differently than most people do and my life finally, officially, made sense 🙂

In a recent post in defense of self-diagnosis, you cite many different barriers that prevent Autistic people from obtaining a diagnosis. What are some practical changes that need to be made in order to simplify the diagnostic process or improve access to those who seek a diagnosis?

Affordability is probably the first issue that should be addressed. If you can’t afford an evaluation, then none of the other difficulties even matter. Autism (and any other disability evaluations) should be easily affordable to anyone and also covered by insurance by default. For several years after I first read and related to Autistic people’s writings, we didn’t have any insurance coverage (I’m in the US), nor did we have any extra money, so I mostly pushed the idea of being Autistic to the back of my mind and tried to get on with my life. Financial concerns held me back for a good four years, and I wish I could’ve gotten evaluated sooner.

Offering rides for in-person evaluations or easily accessible locations (libraries could possibly help with this) from which someone could be evaluated virtually would be helpful as well. Not all of us can drive and adult autism evaluators can be few and far between in many areas. I was fortunate to find a qualified evaluator within walking distance of my house, but most people have to travel long distances because qualified adult autism evaluators aren’t terribly common either.

And so increasing the number of qualified autism evaluators would be helpful as well. In the UK I know that there are at least a few autism courses taught in University that either consult with or are taught by Autistic adults — having such courses available, encouraged, and easy-to-access for mental health professionals worldwide could help increase the number of qualified evaluators and decrease the amount of time and distance required to access such a professional in the first place.

Finally, most Autistic adults seek an evaluation when we’re already burnt out and struggling. Many of us struggle to find and maintain supportive relationships with other people in general. If there were people professionally available (also covered by insurance as part of the process) to take us to appointments or help us debrief during and after the process, that would help immensely. Currently there are some places online with Autistic-to-Autistic support that can help serve the debriefing function, but it’s really an exhausting process even when we have someone supportive to help us through the process.

Are any of your children diagnosed? If yes, what was the diagnosis process like for them, and how did you explain their diagnosis to them (if at all)?

Yes, two of my four children are officially diagnosed, and my youngest has a provisional diagnosis to be revisited at an older age.

The process seemed to be enjoyable for them. They had fun doing the “games” and such with the evaluator, and they got toy prizes at the end of each session. It didn’t seem to stress them out the way that my evaluation did for me.

Afterwards, when we got the evaluation result with their diagnoses, I explained to my children that their brains work differently than most people’s. We talk about autism fairly frequently around here, so it wasn’t a new idea for them. They know about sensory issues and we’ve talked about how their responses and behaviors might not be well-received by other people they’re around. We talk about how other folks might perceive their words and actions, and how what my children intend to convey and what other people assume they’re communicating won’t always be the same thing.

I also make sure that they know how important it is to surround themselves with people who accept them for who they are and who they don’t feel the need to “mask” around or pretend to be someone they aren’t.

Honestly, I think that children’s autism evaluations can actually be more difficult for the parents than for the children and given that autism often runs in families with one or more parents being Autistic ourselves, I wish that things could be done to make our children’s evaluations easier for us too!

Connect with Aria:


Twitter: @mamautistic36

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