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.
When I had my autism assessment for the part they asked for my mother to answer if possible I asked if they could not do this as it would be unreliable in my opinion. They agreed to this and the assessment was completed by dealing with me only
In hindsight, I probably should have done that but I genuinely thought she would be honest
I'm sure they come across this all the time
They won't know your concerns unless you tell them though
It's Monday tomorrow (sorry to state the obvious)...perhaps you could ring them, or send an email?
Also, having to do the questionaires so fast must have been really difficult, you needed time to reflect, and give accurate answers.
Try not to feel too bad, this is on them
It would be worth trying to sort it now though perhaps, rather than appealing it or asking for a second opinion later.....just a thought
I hope it all goes well for you.
It helps to put your past experiences into the correct context, and to have it officially affirmed, to finally get some answers. Though, self-diagnosis is fine too, when you know, you know.
If the narrative describes your inner landscape and helps you come to terms with things and move forward, it fits!
Well done! That's good to hear.
Just to update, I finally had my feedback appointment today. The clinician said that I didn’t meet the threshold in the assessment part with my mum but because of the extra information I provided, I was being given an autism diagnosis. I was above threshold for the other parts of the assessment so thank you all for the advice to speak up as otherwise I still wouldn’t have a real answer. thank you
Thank you both.
i will update once I have heard something back. I was told it could take up to 2 months but I’m hoping it won’t be quite that long
That's great, really positive
I hope it all goes well for you, keep us updated, our fingers are crossed!
You can appeal any decision you are not in agreement with, ask for a second opinion
I really understand what you mean about finally forgiving and accepting yourself
It is a long journey, and to look back with a fresh perspective that puts it all into focus means that you have a fresh start moving forwards
Onwards and Upwards,
Playing catch with the thread. Good. I'm glad you've e-mailed them.
Thank you for the advice. I have emailed them and tried to remember everything that I felt needed correcting from what I heard of the conversation and they have said that this will be forwarded on to the clinician. Hopefully it captures most of the inaccuracies.
I am certain that it fits. Since I started looking properly in to diagnosis, I found that it so wholly explains so many things and I had started really beginning to... for want of another word, forgive myself and finally begin to accept myself.
When Mum came and said that the clinician said she believed it was just social anxiety it felt like a bullet to the chest.