Meet others living with autism: Come say hi

@radioactivems Many of us with autism have a difficult time relating to others. As the term implies, autism is indeed a spectrum, and it can range a lot given different circumstances we find ourselves in. There are a lot of social cues we miss, and our processing of the world around us can really be a challenge. Being neurodivergent myself, I am always cautious.

It's okay to live in your own little world!
Ginger

Hi my name is Jason

Hi, I’m Molly and am so happy to have found this forum! To be honest, I feel a bit like an imposter here, since I don’t have an official diagnosis of autism or where I might fall on the spectrum, if at all. But I saw a psychotherapist a few years ago, and she subtly “suggested” I might peruse this list of common manifestations of autism in high-functioning adult women. I believe the document she sent me listed about 85-90 symptoms and signs, and not surprisingly, I checked off alost every box. To be clear: this was not an official diagnostic tool used in psychiatric evaluation or treatment, but my therapist thought it may help me understand myself a bit better.

This was about 3 years ago. And I admit, I have yet to follow up with a specialist to determine if I indeed reside somewhere on a spectrum of odd behavior and speech patterns, which I guess are unnerving to the general public 🤷‍♀️ Regardless, in a rare moment of what felt like clarity, I decided instead that I didn’t belong on anyone’s spectrum, but rather landed here from another planet altogether. Just curious: is this resonating with anyone else?? 😆

I’m interested to know if other women in this community were diagnosed later in life, and if so, what prompted your decision to see a specialist? Were any of you experiencing more intrusive symptoms as you got older, which began to affect your work and/or relationships? I’m pretty certain I’m autistic because after looking back on my life and talking to friends and family, everything is starting to make so much more sense. My difficulties maintaining long term relationships, the tendency to do either nothing at all or everything at once, my dark and occasionally off-putting sense of humor, the heavy mask and armor I put on just to survive each day without anyone truly seeing me, my near-obsessive compulsion to take my emotional temperature. Constantly. “Wait, how am I feeling right now? What if it changes in a few minutes and everyone sees my face and there will be nowhere to hide because I wasn’t prepared to go from a state of relative peace to full-on Armageddon in 60 seconds or less.” Then comes the peppering of concerned “are you okays,” “are you absolutely certain you’re feeling alright” “Are we still splitting the brunch check or where did we land on that?” But I digress.

I guess its comforting to know that I’m not just totally maladjusted to life and beyond help, considering I’m the only one of my friends who’s never been married (a spinster and proud of it!), the only one who couldn’t have kids, which left me alone to grieve a thing I wasn’t even sure I wanted in the first place. How does one do that? It seemed like another one of life’s pop quizzes I was incapable of passing- one of many that I could never fully maneuver, despite possessing a remarkable intelligence. While useful in academia, I learned that high IQ is basically useless when you have zero practical understanding of the world outside your own head. So yeah, it sucks that I missed out on the evolutionary miracle of having a child. But I had to reach a difficult conclusion- it was better this way. I would never consider subjecting my child to the men whose love I believed would save me, if only I gave and gave and gave until I was left with nothing but an empty glass and mouthful of cotton. Of course I’ve aged and wisened up since those days of being young and vulnerable and beautifully naive. Attributes which rarely served me well at the time, but at least I had my fun 🤭

Thank you for listening to my own experience as a neurodivergent woman, as I look forward to hearing each of your struggles and triumphs throughout your own unique journey. Maybe it’s my age talking, but I am so grateful to be just a little bit different from everyone else. God bless! -Molly

My name is Mike Dierdorff, and I live in Iowa. I am autistic, as are my two adult stepsons, and my wife is an occupational therapist who specializes in working with kiddos on the spectrum. I'm looking forward to chatting with you!

Hello, I’m not sure I feel I am in the right group as I myself a not on the spectrum, it is my 22 year old son. But there is such a positive feeling of community I’m going to tell Nate’s story and see how it goes.

He was a great baby, except loud noises, especially fireworks would cause a meltdown. That lasted until he was 8

When he was 4 he went to Montessori school. He did not participate in the activities or play with the other kids. They recommended another private school or public school, just didn’t feel he was the right fit for Montessori. The teacher told me about what I now know were risky sensory stimulating behaviors that ultimately led to 3 broken arms. He was very clumsy and was diagnosed as a tip toe walker with tight Achilles tendon. Told it usually accompanied a diagnosis of spectrum disorder or cerebral palsy. We did a lot of physical therapy. He showed many sensory symptoms, tags on clothes, only like satin sheets, etc

From a very early age he was EE, ‘doubly exceptional’. Great at math but struggled to read. Gifted and talented math classes and remedial English classes . Fortunately, we lived near university of Virginia which had a great Saturday program for both reading and math. At a late age, he suddenly picked up reading and is now a voracious reader. Also at PTs recommendation got him a fidget seat for school which the teachers say helped

He continued to have friends until about fourth grade, when his friends seemed to vanish or outright didn’t want to play together anymore. It was right around the time parents stopped making the play dates and kids decided for themselves. Unfortunately this was also the time his dad abruptly left the family. My son worshipped his father, and although he saw him 2 days a week, it was generally with the new girlfriend and his sister, no more one on one time.

In fifth grade there was some bullying behavior, so i switched him to a private boys school, lots of one on one time. Also they had a sports period daily as well as recess daily. This seemed to help. He could do the math problems in his head but had a lot of problems showing his work and struggled with organization and time management. He began to show difficulties with transitions and I suspected he had an Asperger’s like form of autism. I found a lot of products on the web, timers that mapped out the time in visual space, that I would set 30 prior to transitioning, fidget toys and so on.

He was diagnosed with depression and sent to the kluge center, a children’s branch of UVA. He was diagnosed with autism and placed in group therapy with kids much less functional than he was. He and his father had a BIG problem with this therapy and the diagnosis of spectrum disorder overall. He told Nate he did NOT have autism and refused permission for him to attend any more therapy.

Since that time I have been seeing a therapist versed in autism on my own, to learn more about Nate’s mind and how to help him, as he agrees with his dad and has still to this day refuses to accept or even discuss the possibility of neurodiversity.

The private school was a middle school and when he graduated he went back to public school. Organization became more of an issue, despite all the help I tried to give. The last two years were virtual because of the COVID lockdown.
I took him to a pediatric neurologist at Hopkins who diagnosed cerebral palsey, but all the doctors and therapists disagree and believe he is a classic case of high functioning autism.

During that time he discovered video games and has had several online friendships than have endured years, he even went to 2 across country trips with his online friends to conventions for video gamers.

He is now 22, lives with me and goes to community college with a goal of being a computer programmer. He works part time as a lifeguard. He is socially awkward but reasonable and I think he does a lot of masking, as social situations tire him out quickly. I have friends with sons his age but he refuses to meet them, I think he is nervous and anxious, but otherwise don’t know why he won’t engage. At times I can tell he yearns for more of a social life and has expressed the desire for a girlfriend.

I think he has a lot of potential and know there is help for him to be a more vibrant community member and to fulfill his potential if he would give in to the idea of spectrum disorder a chance. It’s been years now, I’m not sure it will ever happen.

Any help you can give me to help him would be greatly appreciated

Laura

Laura,thanks for the hug.Are you responding to my ad?
Nils

Laura,
I have two children who went through similar experiences. I am sure I would have as well, had there been diagnosis and support for AuHD in the '60s and '70s. I now have a master’s in education and am working on an Autism post graduate certificate.

You are doing all the right things based on the current research, but the body of research is quickly growing (though may be slowed a bit by federal cuts). There are links between Autism, ADHD, Dyslexia, Turrets, and other cognitive disorders. They are often difficult to sort out and develop specific treatments for. The good news is they are similar enough that the basic supports can help everyone.

I am sorry his father is not accepting of an autism diagnosis. It is not a bad thing. I am diagnosed with Autism, ADHD, general anxiety disorder, and gender dysphoria. I am doing just fine, very well in fact.

Knowing how to talk about issues in a medical framework allows you to better communicate with service providers, shape accommodations at college and in future housing, etc. I wasn’t initially accepting of my own kids diagnosis and I now regret that.

From a resource/service perspective, you are doing the right things. Be wary of anyone who talks about curing autism or that treats is as a disease. It is simply something that we are. We don’t “have” autism, and it cannot be treated like a broken leg. I would also be wary of Applied behavior analysis (ABA), for some of the same reasons. While quality of life is an important part of any therapies, the focus on something being “wrong” is not helpful.

Most of my writing focuses on my gender dysphoria and transgender journey, but I am available through Substack if you would like to reach out directly. I have way more to say than I have room for, or willingness to put in a public forum. https://clararies.substack.com/

Thank you so much. I messaged you on substack