Published on 12, July, 2020
Good morning,
I have recently been going through my autism assessment. I was given my ADOS assessment date about 20 hours before it started so all my questionnaires were very rushed as I had to complete them immediately. Very strange assessment with a frog book and pretending to brush my teeth…
Anyway, the last part was for my mum to do the ADI-r which was over the phone. Mum was taking the call upstairs but speaking very loudly so me and my brother could hear. The 3 hour assessment lasted just over an hour. We heard so many lies.
she said in primary that I had friends come over and I went to their houses… I had one friend and I never went to her house and no one certainly came to ours. She said I just played normal kids games but was a bit shy rather than the truth that I’d mostly just play computer games such as sims, banjo kazooee, Zelda, donkey kong 64, Mario 64, pandemonium etc you get the gist.
She didn’t mention any meltdowns which were so severe that we ended up with no internal doors downstairs because they were all glass panelled and I smashed them banging my head against them when I was out of routine. Or the fact that I still have them now if plans change unexpectedly and I lash out at myself and scream and cry and hyperventilate.
I SH from a young age but she said I was always happy and smiling. I was badly bullied for being different and she just made out that everything was completely fine.
At no point was there any discussion of all my sensory issues like not wanting my hair dried as I can’t stand the noise of the hairdryer and now I wear loops or headphones for this or the hoovering or when in noisy places, or watching tv from the side as the light is too strong and needing sunglasses as soon as it’s not overcast, or not being able to wear lots of clothes because I don’t like the feeling on my skin so wearing the same thing all the time as a kid because it was comfy.
she came down to return my phone after the assessment and said, “see you’re fine, she said it’s just social anxiety.’
I feel really sick as I was just starting to accept myself. I’ve done so much research and was so certain that it explained my experiences. I was diagnosed with social anxiety years ago but it never felt like it explained over half of my struggles and now I feel like I will never know.
has anyone experienced similar and if so what did you do? I feel so lost.
Can you contact the Assesor to tell them that actually you have had significant difficulties since you can remember? It sounds as if your Mums in denial but that won’t help you through life. Can you find someone else who has known you well very since you were a small child, who will give an honest account of the difficulties you’ve have had?