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.
Hi, sorry you have experienced this...
My experience with parents is that they can lie when talking to psychiatrists
My mother certainly did. With her though, she wanted them to see me as mentally ill. Probably because the family was dysfunctional, and she didn't want to be blamed for it.
Try and unpick why your mother may lie in this way. Is she in denial, is it unconscious, or does she have something to gain by consciously lying? What is her motivation, what does she gain from it?
I would sit down and just write an A4 piece of paper, freestyle, to try and get to the bottom of this. Because clearly it is spinning round and round your head.
I don't know how old you are, but if you are still living at home, likely still young. Don't worry about your mother lying. You have agency, in that you can explain this to the relevant people. If you struggle to verbalise it, then write it down. I would send it to the person she was speaking to. Write a letter, just as you have here, and say what you think and why.
Ultimately, it is YOUR experience that is important when determining your autism, not your mother's.
Go with what you think and feel, because it is YOUR lived experience, not hers.
Wishing you all the best with this. Keep working on it, it will then get easier with time. Don't give up, or be put off, by your mother's actions. She likely has her own (unresolved) problems and issues. Most adults do.
I think mostly she is embarrassed that she didn’t notice or maybe noticed but didn’t do anything. With my daughter, I was sure something was wrong and I kept saying, “I’m sure this isn’t typical behaviour.” And she kept brushing it off saying, “no, it’s normal. You behaved exactly the same at her age.” And then my daughter got her diagnosis at 2 and the clinician said, “usually we don’t like to diagnose this young but it’s very clear from her behaviour so we are happy to give a diagnosis today if you agree with it.”
This is why I started to look into assessment in the first place because the clinician she saw suggested it.
I thought mum was going to explain it all and maybe just say that at the time she hadn’t heard of autism or something but instead she said I just behaved normally and then the conversation progressed and wherever something was clearly abnormal with my behaviour she would do a long pause and then give an example from one of my siblings.
The clinician she spoke to seemed to have made her mind up when she ended the call. My questionnaires gave so little info as my mind was blank and I was told I had to complete them Immediately so the clinician could read them before the assessment so most of the info is from her conversation with mum.
I’m 33 and I rely heavily on my mums support so I don’t really feel comfortable confronting her about it, because I need her and I don’t think I can speak to the clinician now that my report is being written up. Plus it sounds like she made her mind up. It’s fine if I’m not but it just feels like this will have impacted a proper result.
Jessica S said:I’m 33 and I rely heavily on my mums support so I don’t really feel comfortable confronting her about it,
Did you not have to fill out a questionaire about these events in your childhood too? There should have been input from both of you where you would have talked about these events.
If not, when you get the result and it if says you are not autistic then I believe there is an appeal process where you can state that the information provided by the parent was inaccurate and incomplete. This is common for people with elderly parents whose mental faculties are not up to the task.
If you can remember the questions then write your own answers and ask your mum to check them with you to see if these tally with her recallection. She may have forgotten or more likely blocked those memories as they would have been traumatic for her too to see her daugter sticking her head through glass doors etc.
Sometimes we make up a more pleasant memory to replace a traumatic one as a way of dealing with the pain. I wouldn't be too hard on your mother as I get the feeling she has her own issues to deal with too - possibly even sharing autism to a degree as well.
If you need any help in getting a response then let us know and hopefully someone here will know the current procedure to lodge an appeal.
It all happened very, very fast. I got my call only a week after I had spoken to my doctor saying there had been a cancellation and I would have my appointment the next morning and I needed to complete them immediately so the clinician could read it before my appointment.
so I rushed through it with very little info as I thought that my appointment would be discussing my experiences anyway. I didn’t know it would be doing tasks and that I wouldn’t have further opportunity to discuss things.
I feel really naive for not looking into it properly. thank you for your advice. I guess for now I just have to wait to hear something back and hopefully there is a way to appeal if it sounds very inaccurate