Saturday, March 16, 2019

I am 37, from Maryland and the Washington, DC area.

My biggest accomplishment was graduating from college 8 months pregnant with a 2 year old and a 4 year old.

I wish NTs understood that their way of doing things and seeing things are not the right way and that those who are different are not wrong. They should know that people that speak differently are not less intelligent than they are, just as they wouldn’t inherently have less intelligence just because they can’t express themselves well in a different language.

I want to tell other autistics: I think we should all gain knowledge of the greater disability movement and learn about intersectional activism. We all need to be together against ableism, not split up into factions.
I am also a parent of two Autistic children out of four.  I believe Autistic voices should be the first voices parents hear after diagnosis. I would like if we got together and put out a manual for the newly diagnosed parents and bring them in quickly as opposed to them hearing from biased professionals and negative parents. I wish we would all treat the new parents gently so they don’t go to the “dark side” because so many of us insult or push back on new parents and push them to be coddled by those negative, abusive parents. That’s not good for the kid, which is supposed to be the goal of educating them.

My biggest help has been psychotherapy and social media, where I have met real life friends without having to deal with all of the “getting to know you” stuff that makes people decide they don’t want to actually know me because I’m different. I have also been helped by my local government with housing, therapies and medical services.

 Signs I showed of having autism: 
People have always commented on my stimming, or the way I speak. I also walked on my toes and didn’t talk to other kids as a child. I lined everything up. However, I didn’t know those childhood stories would end up being traits of being on the autism spectrum.  I also have odd phobias (Adhesive scares me to death), sensory issues, and obsessive interests like only listening to George Gershwin music from elementary school until college…well still do at times.

  I’m technically, “professionally diagnosed” by two mental health professionals. However, I am not “officially” diagnosed with one of those full-day evaluations, because my state’s Medicaid doesn’t cover those evaluations for adults. So for now, my therapist and psychiatrist treat me like I have an official diagnosis. Fortunately, I do have access to OT, speech therapy, etc as an adult with their referrals though. So, basically , I just can’t get SSI Disability payments based on Autism, but I have access to every other treatment and service from the state. I think that needs to change in most states and countries.

When I first received my diagnosis It was weird, because I had no clue or inkling I could be Autistic at all.  I have worked with Autistic children before and the other counselors sometimes mentioned similarities or rapport I had with the clients, but I never thought I could be Autistic myself. So, all I can say at first is that it was a strange feeling and I was curious and it became yet another obsession.

I only found out a year and a half ago about my diagnosis, but I feel now a lot more knowledgeable and I have a lot more urgency to share and collaborate in the greater autism community, including professionals and parents.  It also allowed me to get my two oldest kids evaluated. Actually, my therapist said that I should get my oldest son evaluated and separately and coincidentally, my daughters school thought she should be evaluated as well a few months after my “professional” diagnosis. So, having two kids (which I and many professionals missed for years)on the Spectrum, I have an even greater sense of making sure things are different and better for them and all kids. In those ways, I feel more empowered.

However, I feel sometimes a little sad. The traits that caused me issues all of my life, I didn’t really notice but now I notice it all, including my stimming, the weird things I do, etc. I noticed before, but thought nothing of it really. Now, I know why, I notice when I do things and I also notice others’ reactions to those things, which can be kind of isolating and depressing.  I do feel a little more sad nowadays I think because I am privy to my own shortcomings now.

I think not having the diagnosis early in life might have been helpful, I didn’t have any limitations placed on me, whether actual or imagined. I wasn’t forced into social contact or skills…until elementary school, where I did have social skills pull-outs from class.  However, when I was in middle school, it would have been helpful to know why I was feeling things, having sensory overloads, etc. It really became a problem after I graduated high school and went to college. I was suddenly on my own, and unable to take care of basic things and stay in school. I let my special interests turn into obsessions that led to complete and total isolation from people and basic living expectations like showering, sleeping and even eating.  Not being aware or protective of my sensory environment and executive functioning difficulties led me to have many subsequent problems with jobs and relationships. I would have done so many things differently had I known earlier.

 I think my autism went unnoticed as a child because I spoke, walked and read early. But, my speech was mostly echolalia, but my parents didn’t know there was anything wrong. Also, my Mom’s sibling that she is only 11 month younger than, is also Autistic. So, she grew up side by side with an Autistic person and my traits might not have seemed odd to her. I also suspect my Dad was Autistic as well, so the tow of them together would have never known. However, my much younger brother was actually diagnosed as Autistic at age 8, so I guess I might have hid it well or at that time, I was in high school and having a lot of success, so they may not have thought about it.

Barriers on getting a diagnosis as an adult are evaluations are expensive and not always covered by insurance for those over age 21 in my state of Maryland.  I have to pay at least $700 out of pocket just to get an evaluation that everyone in my life knows is the correct one

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