This is our Autism


I have been slowly creeping back into the social network and reading other blogs.  Ever so slowly because it takes me a while to recover when things upset me.  That is just how it is.  Some blogs that I follow come to my email, especially the ones I started following pre-twitter 🙂

Anyways almost every day I get an email from Diary of a Mom.  I admit I don’t read it every day but this morning I read it before I even got out of bed.  I will admit this morning I started to read this post and then stopped when she said people may think she is an “@sshole” for what she wrote.  That was not the kind of post that I needed to read right now.  So I stopped, but then I went back and read it.  I am glad that I finished it all.  She was far from an asshole and of course her post was wonderful.

She wrote about the series at The Thinking Person’s Guide to Autism.  They sent her questions for her daughter to answer and her daughter was exactly able to answer them.  I won’t spoil the rest of the post, it was a wonderful post about her autism and how it is different from someone else’s.

I thought about the post all day.  I thought about a post that I had written in the past about how we are all on a different journey with autism but we should all try to enjoy the scenery and try to cheer each other on.  That was one of my favorite posts that I have written.  I try really hard to live by that but sometimes it is hard and sometimes the emotions get in the way.  Sometimes it is hard to remember that we are all living in our moments.

I thought about writing about how although my son is verbal and rather articulate when discussing his video games or something else interesting but he would never answer the interview questions from TPGA.  There is nothing wrong with that and maybe he would 10 years from now?  I have no idea. I was glad that Jess mentioned in her post that someday maybe her daughter would be there. Because that is the thing about autism as well.  You don’t really know what will happen.  I have often called my son a work in progress.  Some days are better than others.

I thought about how our autism has changed a lot in our house.  That is actually one of the reasons I started blogging.  I would read other blogs about a child saying they wanted to die, hitting other kids, hitting their parents, biting themselves, banging their head, smearing poop everywhere and feeling hopeless.  I related right away.  I have been there.  But I get it that when you are there and you see me here, you think I don’t have a clue (in fact I have been told that).   But maybe you will read something here about how I think or what has worked with my son and you will go try it and it will work.  Maybe it will help in some way. Maybe it won’t.

I thought about how I really feel that I relate to my son.  I feel that we have a lot in common.  Is he where I was as a teenager?  Yes, in a lot of ways and no, in a lot of ways.  We are not the same person.  I don’t know where his progress will take him.  I just know we can only take one day at a time.

When I went over to the Thinking Person’s Guide to Autism site I read the point of the “Slice of Life” series.  “Our goal is to help TPGA readers understand that autistic people are people who have interesting, complicated lives and who are as diverse and varied as any other population united by a label.”   I think that is very true.  I have read parents of one type of autism complain that someone in another area of the spectrum gets all of the attention.  No one is happy because they feel their side is not being represented.  Everyone is very different.  I think autistics have some very common threads but no we are not all the same.

To say all autistics are the same would be buying into some kind of stereotype.  No one wants to be compared or judged by a stereotype.  Everyone wants to be an individual. I have some of the best conversations with other autistics on Twitter.  That was one of the first clues that I wasn’t NT.  In fact I would get tweets and messages from aspies telling me that they were pretty sure I was NOT NT.  Why, because we had so much in common.  We thought in a similar way.

I think often how we focus on outside behaviors.  That is what the DSM is about, outside behaviors.  (all of this is my opinion, because it is my blog, not a research paper) But it is not the outside behaviors that define an autistic.  The outside behaviors are how the autistic is interacting/reacting to the world.  As I become more stressed I may act out in an “inappropriate” way.  When my son becomes stressed he stops being able to verbalize his needs and starts to use animal noises.  I cry. My son used to bite himself.  I used to throw my hairbrush.  All the same underlying cause but different external presentation. Different but same.  (Okay that could be a whole other post so going to stop there)

My point is that there are certain things that are similar among all and I hope that the similarities can help bond us as a community.  All we have is each other.  A parent of an NT child can never, ever begin to understand my world. But parents of autistics have a lot of the same experiences even if different.  Just look at the #youmightbeanautismparentif on twitter.  If there are differences I hope we can learn to appreciate them.

I don’t ever want to offend anyone.  Unfortunately I have learned that is impossible.  I may not totally understand everything you are going through with how your autism is.  Although my son has always had selective mutism I know it is not completely the same as a child not ever talking.   I don’t know what that is like but I cry tears of joy whenever I see a parent sharing that their child spoke their first word or first pre-verbal attempts

I think the series at TPGA is a great idea.  I think it is important for everyone to understand the wide range of what exists and what is possible. Within the community and also for anyone looking for information about autism.

I think that Diary of a Mom should submit her post as is.  That is their autism and I think it is beautiful.

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Comments

  1. thank you. for all of it. thank you.

  2. You are so right – we have so much in common – all of us. My son throws when he is overwhelmed. 😉 ((thank you)) for sharing your stories.

  3. Neo,
    I deeply understand taking social media breaks. I have great trouble maintaining consistency and I feel like a failure because of it. Reading about you needing a break too gives me a great feeling of relief.

    ” But it is not the outside behaviors that define an autistic. The outside behaviors are how the autistic is interacting/reacting to the world.”

    I really get this. It is so essential for us to bond as a community. so often I hear, “Well, everybody does that.” when I realte an experience. I feel irritated because I know my internal experience is profoundly different that theirs. Some things vibrate my soul and stick with me for days. Autistic insomnia has a specific flavor that typical people have trouble relating to, for example.

    I am grateful for blogs that provide acceptance and community. I like visiting with you. 🙂 I will check out Diary of a Mom. Thank you, as always, for sharing.

  4. I like you do not always read every posts in my inbox, so I missed this one, but I just read it and I agree Jess should submit it as is. M. has never had trouble answering my questions, but recently she made a decison not to blog anymore after focusing on the bullying for so long. I think it has been a good decison for her, but I do hope her former posts help others.

  5. spectrumscribe says:

    I enjoyed this post. Balanced, optimistic, positive but also realistic and honest. You are providing thoughtful objective information and allowing readers to make up their own mind.

    Thanks for sharing 🙂

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  1. […] The rest is here: This is our Autism – The Aspie Side of Life […]

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