My Autism Discovery Story: Autistic Acceptance Month Day 3

I remember the special ed classes. I don’t remember why I was in them or what I was being taught. But I remember being pulled from my regular class every day to go to a dark little room and the confusion about why I had to do this when almost no one else did.

I remember being a safety at school, so sixth grade, “monitoring” the empty hallway, and taking a moment when no one was around to spin and spin and spin for the sheer joy of it.

I remember my parents gripping my chin telling me to LOOK THEM IN THE EYE when I talk to them.

I remember walking up to some classmates who were talking and trying to join the conversation, only to get shot down because I violated some unwritten, unspoken rule of socializing.

I remembering family holidays surrounded by aunts, uncles, cousin’s grandparents, where I’d sneak off to someone’s bedroom and borrow a  book from their book shelves and just relax away from the noise happy that my family THERE but not needing to be engaged with them to be comforted by their presence.

I remember the lectures on the way home about how rude I was, how inconsiderate, how people wanted to see me and talk with me and how could they do that if I never took my nose out of a book?

I remember sitting down at our old IIGS apple computer, with my newest book, a catalog of different types of cetaceans, creating a database of all their stats and info. Even then I knew there was something weird–something wrong–that I was more interested in putting that information into a database than reading the detailed descriptions and history of how they were discovered.

I remember twitching my fingers, back and forth, back and forth, and the doctor who medicated me for OCD.

I remember the teacher who realized that I really was trying and instead of berating me for not doing more, sat down with my parents to talk about ADHD.

I remember the doctor who said that everyone is a little ADHD.

I remember the cousins who accepted my eccentricities and the aunts and uncles who said “that’s just the way she is.”

I remember sitting in a psych office, an adult with children of my own, desperately trying to explain to my adoptive parents WHY I can’t “just do” everything that comes so easily for them, from cleaning, to waking up in morning.

I remember opening an article on aspergers, because my nesting partner said he had aspergers, and the more I read the less I’m thinking of my partner and the more I’m thinking “This is me, this is me, this is ME!”

I remember standing in a parking lot with my adoptive mother as she tells me that someone, somewhere, advised her to get me evaluated for autism, but she didn’t.

I remember telling my caseworker, and my other caseworker, and my counselor that I thought I might have autism, and their support.

I remember calling my bio father to ask if autism sometimes made it so you couldn’t speak, because I was going aphasic more and more often and didn’t know what was causing it.

I remember the burnout that took 3 months to recover from. Months where I couldn’t talk more often then not. Months where I slept on the couch because the noise of the fan in the bedroom was sensory overload and showered in the dark (when I showered at all) because the lights are tied to the fan in the bathroom and the shower was sensory overload enough with the fan added to it. Months that convinced me that yes, I am autistic because nothing else explained the burnout and the sensory hell and the constant aphasia and rocking and repetition and, and and…

I remember finding the autistic community and #ActuallyAutistic and two straight weeks of “Wait a minute, all this time I’ve been dealing with that and that’s been autism?” “You mean that’s autism, everyone doesn’t do that?” “If I’d know this was part of autism I’d have realized I was autistic a heck of a lot sooner!”

I remember Rosh haShana in the middle of the burnout, when someone asked how Moses could not talk and then talk, and saying “I’m autistic, sometimes people’s ability to talk changes. I’ll probably be unable to talk by the time I leave here. Then later I’ll be able to talk.”

I remember a little while later trying to say something in the discussion and my stuttering, stumbling barely coherent words.

I remember during a break in the service a synagogue member coming up and saying he knew I was autistic the first time he saw me because of the rocking and inviting me to an autism support group 2 hours away.

I remember telling my bio sister that I realized I’m autistic and nearly screaming when she replies me, “Oh, is this a surprise? I knew it when I met you.”

I remember telling my doctor about how I have trouble with creams and gels because I have sensory issues.

I remember my doctor asking if I am autistic.

I remember asking my doctor for a referral to a shrink so I can get an autism diagnosis.

This was two months ago.

I don’t remember the appoint with the shrink. It hasn’t happened yet.

This post is part of the 30 Days of Autistic Acceptance and Appreciation posting challenge.

Please help spread the word about Autistic Acceptance.

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Course of Treatment: Getting a Diagnosis

Once you’ve made the decision to get help, the first step is usually setting up an appointment with a doctor or counselor. Some people will go to a family doctor or general practitioner first, others will go straight to a psychiatrist. Some set up counselling through their employer, school, or religious organization.

In the US, insurance will only pay for psychological treatment if you are diagnosed with a mental disorder listed in the latest edition of the DSM (currently the DSM-5).[1] So for many people, getting a diagnosis becomes the crucial first step to getting the help they need.

There are several good references available for finding a mental health professional, so I’m not going to go into that here. I will say that if you have a bad feeling about a mental health professional, get the hell out immediately. I can’t speak for the rest of the world, but in the US mental health care is a seriously mixed bag ranging literal life savers, to people I wouldn’t trust to take care of a plant. I’ve heard finding a mental health professional compared to finding a babysitter–it can take several tries to find one who is actually worth the time and expense. I don’t recommend looking for a poly-friendly mental health professional unless you are in a large urban area. People advertising as poly-friendly just aren’t that common. You can often (thought not always) find someone open minded on the LGBT-friendly lists, or you can educate your own poly-friendly professional (I’ve usually had good results with this, including in rural PA and smack in the middle of the Bible Belt in Tennessee).

Getting Diagnosed

Most of the time getting diagnosed with a mental illness is scary simple. You meet with a therapist, doctor, etc, you describe your symptoms, and they say, “well it sounds like you have X”. There usually isn’t any testing. The famous Rorschach and other less famous evaluation tools rarely come into play. No blood tests, certainly no actual testing your biochemistry before declaring that you have a “brain chemical imbalance.” Just a review of your life history, discussion of your symptoms, and a diagnosis code you may end up carrying around for the rest of your life.

Simple, right?

What to Watch Out For

People unfamiliar with mental illness and mental health care often think that once you have a diagnosis the hard part is done. It’s understandable because this is actually the opposite of what you go through getting a medical diagnosis.

For five years my partner Michael suffered from pain, weakness, “false seizures” and a bunch of other stuff, to the point that twice he was told by doctors that if they couldn’t find out what was wrong and treat it, he’d be dead in a few years. Everything from rheumatoid arthritis to brain cancer to multiple sclerosis was tossed around. But no doctor would dream of diagnosing from reported symptoms alone. If they didn’t have a test to back it up, there would be no diagnosis and no treatment beyond basic painkillers. But as soon as he got a diagnosis, the doctors were able to pinpoint the most effective treatment, and he started improving. Because it took so long to figure out what was wrong, some of the damage is permanent, but once they found out what was wrong, the hard part was over.

This is what we expect from medicine. People who have actually dealt with long term chronic illnesses know it rarely works this way–getting diagnosed with multiple sclerosis is not the end of the struggle. But even with hard-to-diagnosis illness like multiple sclerosis, it’s understood that doctors ain’t doing shit until they have a verified diagnosis.

Mental health…doesn’t work like that.

So if you or your poly partners are just started to get treatment for mental health, you need to understand that getting diagnosed is at best a tiny step towards getting better. Sometimes, with an excellent shrink and a fair bit of luck, you can get the right diagnosis, find the right treatment, and start seeing real improvement in a few weeks.However, that is not the way to bet.

It is also important to be proactive in learning about and understanding the diagnosis. If what you learn about your diagnosis doesn’t fit your experience, talk to your mental health care provider. Yes, they are professionals who (should) know more about mental illness than you, but you are the expert on your experience. If they aren’t willing to listen to you, dismiss you out of hand, or in any way pull a “me expert-you stupid” schtick, get up and walk out. That is a huge red flag and sign of a horrible mental health care provider.

A good mental health care provider will either discuss changing the diagnosis, respectfully explain to you why they feel your experience fits the diagnosis or both.

This post is part of the Polyamory and Mental Illness blog series.



1. This is one of the major reasons “gender dysphoria” continues to appear in the DSM. In spite of the stigmatizing effect of classifying the experience of trans folk as a mental disorder, it vastly increases the treatment accessibility. Insurance companies can still refuse to pay for hormone treatment or surgery, but they can’t deny counselling and assistance in social transitioning, as long as there is an official DSM diagnosis.