What Its Like Being Undiagnosed Autistic.

Dear Reader,

I was born in 1989, 26 years ago. It’s strange to think that in the 90’s which to me does not feel that long ago, autism wasn’t really looked for or even screened in a lot of children. Parents had to actively look for these things. My problem here is that my parents do not understand autism and I am high functioning, and I think that it may have masked the possibility of their being something wrong.Β 

One of my worst memories from primary school was how I struggled to do a front roll, I didn’t have the co-ordination and my teacher made it in to a spectacle. My teacher would keep saying “just try” every time I wouldn’t be able to do it. So I would get angry and cry out of frustration and then my teacher would tell me to stop being silly and I would be angry for the entire lesson andΒ hit stuff from walls and the floor (not that anyone noticed)

As I moved to Secondary school things didn’t get easier, I knew something wasn’t right with me. One of my narrow interests was Monster films, like Godzilla. I took A Level media studies at 16, it was in this class that my pre-occupation with Godzilla made my teacher say to me “Some people are autistic and they don’t even know it” She confirmed what I had waited for someone to say to me, she herself was the parent of a severely autistic boy. And now my worst fears were coming true, I had something wrong with me and nobody to help me.

For this class we had to create a presentation, on subjects such as violence or disability. She dreaded my presentations, I always insisted on going first, I always had a 20 minute presentation (it was supposed to be 5) I would use lots of obscure video clips, I would use Godzilla in almost every presentation.

When I was 22 I decided to go to the University medical office and tell them that I thought I was dyslexic and autistic and needed to talk to someone, they booked me an appointment and after talking to a disability officer she sent me for both a dyslexia test and an autism assessment.

I arrived an hour early to the test centre, When I got into the room I sat down, the woman began talking to me she asked about my parents and I burst into tears, I couldn’t describe my parents and I was angry and frustrated that I couldn’t do it and that was the turning point for me. I realised that I really needed help, I really needed to understand this part of me.

After an hour the woman stood up and said “its in my opinion that you suffer from Aspergers syndrome”, she then explained Aspergers place on the autism spectrum. Later she sent me a report about what she had learned about me to back up her diagnosis. Suddenly everything made sense, all the things I did that I couldn’t explain, why I became obsessed with TV shows and annoyed everyone with my random trivia facts. Why I could relate almost anything to a pop culture reference.

The report is split into sections, here are some stand out points:

Social Interaction

Learned to make eye contact when realised it was expected of her.
Does not seek to share information with others about feelings, health etc

Special Interests and Routines

Rocks when stressed
Has intense preoccupation with films and television
Thinks in black and white

Communication

Turns conversations on to topics she is interested in
Does not recognise when others are bored of the conversation

Response to Sensory Stimuli

Does not like the texture of certain foods
Finds noise stressful and distracting, becomes irritated by noise

I then had to do a “Mind in the Eyes” test It’s a test that measures your ability to read another persons emotional state, I got 19 out of 36, (most people would score 25-30) I used a process of elimination, which means i looked at the faces logically instead of using “theory of mind”

In the conclusion it states that the more stressed and anxious I get the more “Aspergers like” I become, that is definitely true.

Being undiagnosed for a huge part of my life was difficult, it meant I did not get the support I needed in school and struggled because of it. I wasn’t learning in an affective way and that caused me many problems as a result of this I didn’t learn to deal with the things that make me more “Aspergers like” It also meant that I never really understood myself until I was 22,

It’s important for people with Aspergers and other Autistic spectrum disorders, to understand themselves as much as possible and for those around them to understand to. So they can help them however possible, I never had that and I think it has affected me negatively. My autism has become the butt of jokes among friends who know about it. Its made me very conscious of what I say and who I say it to. Just last week I told someone a random fact about the sun and they looked at me like “what are you talking about?” So I try not to do it.

I think if I had been diagnosed at an early age I maybe would not have learned to mask my Aspergers, I learnt to hide things because I am very conscious of people making fun of me, but also because sometimes I take sarcasm to heart and I take generalised comments personally and I discovered that expressing that made people angry and I don’t think that’s a good thing. I think I should feel safe expressing the true me. But I don’t, because I have spent more of my life thinking I’m weird and “not right in the head” then knowing that actually I have a diagnosis, and that there is support out there for me and others like me to.

As Always,

The Elephant in the Room

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18 thoughts on “What Its Like Being Undiagnosed Autistic.

  1. Great respect for your path in life! How courageous of you to find people to help you find a diagnosis that offers you an explanation. Just remember like everyone else people who find the asperger’s diagnosis helpful, also have hidden gifts as well as challenges. Your gift looks to be writing! You express yourself in writing very well. Thanks for this post.

    Liked by 2 people

  2. I love this but then again I am biased. My father had Asperger’s Syndrome. He diagnosed himself at the age of 66-67. He is the one I bonded with so I picked up a lot of this way of approaching life myself. What I hope for you is that you can find a place and a series of friends who are like you (and they are out there somewhere) and then you could truly be yourself. I know you also have the other issues to tackle which makes it even more difficult. But I think that at the age of 26, time is kind of on your side. My son is a little bit older than you and I had heard of Asperger’s for the first time when he was little, this would be in the 80s. I often wondered if it applied to him as well. But in the 80s it was just a fluke that I came across that article and had even heard about it. He had many tough years in his life. I think he has mostly found his way. Probably it is different for men on some level because there is a simpler expectation for emotional expression and connection. Maybe. Anyway, I just loved this blog post.

    Liked by 1 person

    • I think sometimes part of my problem is learned behaviour. I think both of my parents show symptoms of different types of autism. It’s so scary how fast things have changed and how really autism is only a thing that’s really getting coverage now. Thanks for reading Gale πŸ™‚ It always makes me smile to see you comment on my work!

      Liked by 1 person

  3. Wow this is such an incredible piece and it helps shed light on how difficult it can be for a child. I admire your strength and determination. As you mentioned, it was a hard time for you but you still took the time to write about it and help others understand. Thank you!

    Liked by 2 people

  4. I can relate to a lot of what you say here, I am sure I am also autistic. However at the age of 30 I am still undiagnosed. How an earth did you manage to get an official diagnosis as an adult? I am told the adult waiting list for a test is over 2 years! Any advice or tips on getting an assessment? I think you write some very interesting blogs, that I can quite often relate to.

    Liked by 1 person

    • I was pretty lucky that when I was at university they pretty much did all of the work towards the assessment for me, they even paid for it. I had to wait about 6 months. I honestly never knew there was such a waiting list for this type of thing until I had to wait.

      I think the best thing to do is to look in to private assessment, its probably the easiest way to get seen. And try to be as honest as possible with them. The woman who assessed me was really surprised by my openness and how much i knew about myself. She said that often people take a close friend or family member in with them because it helps them find out more from another point of view.

      Like

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