Published on 12, July, 2020
I don't feel like it went well at all =(
I'm not contact with most of my family for various reasons, and so don't really have anyone thay can corroborate my traits having been there since childhood. Before my assessment I explained this, and gave phone numbers for my uncle (who I'm not sure how helpful he'd be, due to family issues I'm not sure he saw me much as a young kid), and a high school friend. I also spent a few hours writing down notes about all the traits and my struggles that I could think of. I was under the assumption people would have been contact and questions asked, plus my list read beforehand, and so didn't being them in to help me as I maybe should have.
I found it incredibly difficult thinking of a lot of it on the spot, and many of the questions didn't really lead to me discussing some of what was in my initial list. And so because I'd had a poor relationship with somewhat emotionally abusive parents, I was told that "I have autistic traits, but they could have been because of my parents mistreatment and it isn't clear that I have ASD". I waa also basically told that if is been assessed some years ago I'd have been diagnosed with Aspergers, but by today's DSM criteria, unless they get more info from my uncle and friend to prove early childhood traits, I don't get a diagnosis.
I feel very disheartened by this. A lot of my parents mistreatment of me, I feel, was exactly because I showed autistic traits, not the cause of them (such as them getting angry at me for replying words and phrases, or sometimes even sounds I'd heard from others, repeatedly listening to the same songs over and over, spending too much time in my room by myself, or the fact I'd flat out refuse to eat many foods because of their texture.)
I'm not sure what my next steps should be.
Have others struggled in similar ways to me? Or, managed go get a diagbosis despite not having anyone to prove early childhood experiences?
Is it worth me trying to seek out a 2nd opinion, or the fact I'm no contact with family just mean I get the same response?
Because of my troubles explaining myself in a verbal manner, I found it very stressful today and I'm scared also that seeking a 2nd opinion would just result in exactly the same.
Thanks in advance for any advice!
Do you have any personal memories of your behaviours/thought processes as a child? If you do not have someone who would be able to tell what you were like as a child then your own memories should be valid.
There are many ways for autism to present itself that are not the stereotypical signs that people look out for. I was overlooked as a child because my sibling was presenting with more stereotypical/challenging behaviours, and I was not like her. She was diagnosed at uni and I was diagnosed just a week ago.
When I put my suspicions to my mum she did not think I had any autistic behaviours growing up. On reflection, we came up with many situations where I displayed qualifying characteristics. By the time the assessor spoke to my mum about my childhood (they had a conversation lasting over an hour), my mum was convinced I would be diagnosed as autistic.
Some examples are:
literal thinking - my mum used to sing I'm Gonna Wash That Man Right Outtta My Hair (from South Pacific) when she was washing my hair. For ages I assumed that one had to wash one's hair to get rid of the little men living in it.
Overstimulation - I had lots of extra curricular activities but when I started school I would often refuse to go to my activities or become stroppy. Eventually my mum realised she had to cut out all activities apart from school. Also I would hide under the bed at friend's houses because playdates after school were too much.
Unusual play structures - I did have dolls, but I didn't play with them as such. Instead I spent ages coming up with elaborate backstories and personalities for them, making lists of their likes and dislikes.
Obsessive behaviours - I read constantly, even while eating or walking out to the car for school. I also created complex imaginary worlds, inventing languages and drawing maps and sigils, making lists of common names from the different countries, etc.