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Mum lied on my ADI-r

Jessica S

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?

  • I'm sorry you went through that.  Have you asked her why she said those things?  Some parents just can't face the fact that their off spring might be autistic and pretend to themselves there's nothing out of the ordinary... Some parents just don't notice that anything IS out of the ordinary.  My mother was clueless about my medical phobias because I internalised everything as a kid and never once said to her I was terrified.  Plus I think is has a huge number of traits herself and that doesn't equip her to notice.  My mother's never had a friend outside of the family and rather seem to think it odd that I actually had friends as a teenager.  I don't think she saw why I wanted or needed any.  Surely family is enough?  

    I'd concur that it might be a good idea to write to them telling them that you overheard that conversation and that her perspective, for whatever reason is completely different to your own.  You might want to look for other evidence to back you up.  Is there any comment in your school reports about bullying or not socialising etc.  Did you keep a teenage diary documenting this stuff?  If so, you might want to copy and send that to them.

  • in reply to Martin

    Possibly… but she seems to accept my children’s diagnosis and I thought she had started educating herself and she had before pretty much said that she believed I was. 

    I found the whole experience very confusing, as it’s like she agreed with my concerns and seemed to validate my experiences when we talked about it beforehand but then said totally the opposite when on the phone to the clinician.  

  • in reply to Caelus

    I’m wondering whether she was worried about getting herself in to trouble. I don’t know that her parenting methods would be approved of Thinking

  • in reply to Allyboo

    In hindsight, I probably should have done that but I genuinely thought she would be honest Face palm

  • 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 Thumbsup

  • im guessing your mum covered it all up because she thought you was getting into trouble or something?

  • I think that some parents see a diagnosis of neurodivergence of their child as a bad reflection on their parenting skills. You need to educate your mother that your being autistic has absolutely nothing to do with her parenting and everything to do with your brain being wired up differently, and therefore operating differently, from the brains of the majority of people. Having said this, your mother was also obviously putting her own interests above yours, as I am sure you informed her that you wanted a diagnosis for your own welfare, which is worryingly selfish. I'm a parent and would put the interests and wellbeing of either of my children before my own, it is part of what being a parent should be.