Life After Adult ASD Diagnosis - A Year Later

It has been over a year since my official diagnosis of ASD and SPD, and I feel like I've changed so much.

My journey started with learning and self-acceptance, and moved more towards advocacy.

I'm open and honest about who I am. I am open and honest about my limitations. I try not to boast about my gifts :) I still have a lot to learn.

Being open and proud has helped a lot. Not succumbing to the pressure to "be normal" has taken a huge weight off. Similarly, being able to tell people exactly what I need and how I work has helped for mutual understanding. I can explain when/why I come off the wrong way sometimes.

I think disclosing has been beneficial for me because when I tell others, I am able to get better feedback about how they perceive me. When I understand how I am sometimes giving off the wrong signals, so to speak, I can work to improve on that. Suffice to say, I'm still learning social skills and this awareness has helped.

My picture for the Amazing Autistic Women project

With diagnosis, I joined a club and met so many amazing people so far. I'm still learning and it's pretty cool.

How I Knew Something Wasn't Right

I pretty much started this blog after the Little Man got his autism diagnosis. Not to say everything was peachy before then, but I wasn't chronicling our experience at the time. Every now and then people ask me, "what were the signs? How did you know?"

Honestly, I didn't know. We knew something was very different about our son, but not what exactly. Actually, because doctors were giving us a hard time, we thought there might be something wrong with us!

First off, I speak from a position of great privilege - I have a degree in Linguistics. Because of my degree, I studied language acquisition and childhood development. I studied the brain and learning disabilities. I then volunteered with Deaf children and learned speech therapy techniques. So I had some experience working with non-verbal children and what "normal" development should be like.

From the beginning, my son was not "normal." As a newborn, he was very alert, like a wise old soul. This was when he was quiet, but otherwise he was screaming. When quiet, he stared at lights and didn't look at us much. We called his name and he did not respond. We actually thought he may be deaf, so we had his hearing tested. It was fine.

His head grew very large, very quickly (a sign of autism for some), so we had that monitored. He seemed to space out now and then, so we had him tested for epilepsy. Nothing there.
He made a few noises, but didn't babble. He drooled a lot and flapped when excited.

For me though, the biggest red flag was the lack of speech. Because of what I learned about speech therapy, I was using elicitation techniques with him from birth. He never imitated us. We did baby sign, which he responded to pretty well. We could tell he understood us, but wasn't reciprocating.

He sat quietly and spun the wheels of his trains. He got down on the floor to look at the wheels move. He flicked his fingers in front of his eyes. When we took him to the park, all he did was sit in the sand and run the sand through his fingers and squeal loudly. We couldn't put him on the slide. If I stuck him in the swing, he sat passively, as if waiting for it to be over.

Aside from not speaking, he couldn't eat food. He was constantly putting stuff in his mouth, but not food. He would choke and gag on the baby food. Or he would shove a whole bunch of something in his mouth and hold it there. (That's more SPD and Apraxia than autism)

So I took him to a bunch of doctors with these issues and was spoken to like I was crazy, like I was doing something wrong to cause these things. What parent doesn't want their kid to eat? All he would eat were crunchy things that would melt in his mouth so he could swallow them whole without chewing.

It wasn't til he was over two and a half that he got diagnosed as autistic. It wasn't until he was over three that we got the Apraxia diagnosis. Not for lack of trying!

I wish doctors understood the power of a mother's intuition. No one wants there to be something wrong with their kid. We all want our kid's lives to be easy.  I wish simple things did not have to be a struggle for him. That doesn't mean I don't accept him as he is, where he is right now. If his path could be easier, I would welcome it. I think any parent can relate to that. I wish doctors did also. When a parent comes with concerns, they need to be taken seriously. I know my child best. You know yours. If you are concerned about your child, keep fighting, keep searching until someone hears you. 

How My ASD Diagnosis Changed Me

It has been just over six months since I got my official ASD diagnosis. It feels longer for some reason, but not in a bad way. It's amazing how much I've changed in the last six months.

I have embraced my diagnosis with open arms, using it as a catalyst for self-discovery and new levels of self-awareness. Mostly, I have felt empowered by it. I feel authentic. I no longer feel ashamed of myself and because of that, I feel I can live more like my true self. I am allowing myself to be me, just the way I am, without negative judgment. And that is so freeing.

I know a lot of people say they feel like diagnosis makes them "act more autistic." I guess I can say a similar thing, in the sense that I am allowing myself to be naturally, quirky me. I no longer try to hide my stims. I accept them as needed and helpful, for the most part.

I "came out" at work, which has been both good and bad. Good because it has given me a way to fight for acceptance and bad in the sense there is still a lack of understanding of what it really means to be Autistic. However, I guess I can't accomplish everything in six short months. Still, there is hope for improvements and I don't regret doing it.

I have felt more empowered to stand up for myself and my family. I would have said I was always a strong person, but truthfully, I lacked certain skills when it came to dealing with my mom. I came to the realization that I was still doing things simply to "keep the peace" or make her happy at the expense of myself and my family. I finally found the courage to put my foot down. Case in point, normally I would have gone to her place for Easter dinner, not because that's what I want, but because it would be what *she* wants and I would suffer through it. She is just a very negative and controlling person and being around her makes me anxious a lot of the time. I refused to go, which of course made her angry, but she'll get over it. Instead of turning my life into chaos and bending over backwards to make it work for her, I've had a very relaxing weekend with my little family at home. That peace of mind is priceless.

I have become better able to let anxiety and other stressful emotions wash over me, rather than panic. I think understanding that my anxiety stemmed mostly from over-stimulation of the senses and learning to listen to and accept my limits, means that I am a much happier and calmer person. Before I didn't really understand what I was panicking about, which can be pretty scary. Now I am more aware of my sensory issues and finding ways to work with them. I accept that I can take time-outs for myself and I can find ways to recharge and cope. I no longer blame myself for what I previously perceived to be "failings" or "weakness."

On this day, which also happens to be my 13th handfasting anniversary, I think back to the vows we wrote for each other. One line was, "to delight in who you are becoming." We knew over time we would both change and we decided to accept that off the bat. I know my husband still delights in what I am becoming and I delight in his changes as well. But I can also say that I am also taking great delight in who I am becoming.

As I sit perched in my new hanging chair - which my husband worked hard to mount for me, knowing it would calm my sensory issues - I can't help but delight in the whole process of becoming more me.