Adult female diagnosis - mum doesn't think I had many childhood traits

Hello. I am an adult female (35) and think I might be autistic and have self-referred to my local autism service. They sent me 3 questionnaires to fill so I did mine (the EQ and AQ tests) which came out with a high likelihood of autism. But my mum filled out the CAST questionnaire for childhood autistic behaviours/traits and I scored quite low on that and my score indicated low or no autistic traits. I have just posted these off and am now waiting to hear.

I am wondering if this will affect the chances of me getting diagnosed with autism. I am worried that based on this CAST questionnaire I will be refused an appointment for diagnosis. My mum just seems to think I was a quiet and shy little girl but that I did very well in school, had no learning disabilities, had friends and had no problems with eye contact, strange behaviours, adherence to routines, etc. I just think my mum probably can't remember what I was like as I am 35 now and it's probably all a bit hazy, either that or she just didn't think any behaviours I did have were unusual (when actually they were!). I also think that the CAST questionnaire focusses on stereotypically male autistic traits.

I think I have so many autistic traits now as an adult woman (including social anxiety, general anxiety, obsessions, rigid thinking, resistance to change, and problems sticking to education and employment) that I am very doubtful that I had so few traits as a child.

Does anybody here have any experience of adult female diagnosis and problems with the developmental history part, especially perhaps with parents not thinking you are autistic or that you had any traits as a child? Would a low CAST score on its own be enough to refuse a diagnosis appointment or do they take into account current traits?

Thanks!

Parents
  • This is a tough one and I guess a) much depends on the parent as to what if any light they can or are willing to shed, probably for many of the reasons Plastic wisely points out, but b) hopefully, the assessors know that too and will focus more on you.  It might be that if they probe a bit your mum does have useful information.

    I've had a very difficult relationship with mine over the years, but I am now probing her and some very odd things are coming out that she didn't think anything of at all.  Well, she wouldn't.  I was her first and to whom would she compare me?

    For instance, there is a mass of information in her repeated stories about me learning to talk over the years which she thinks is absolutely normal, but which since I studied child language acquisition at university decades ago, I have known wasn't typical and had always thought either I was just a bit odd or she didn't remember it right.  She's re-telling that now with much more detail and it's gobsmackingly obvious very suddenly that those stories show I learned to speak through Echolalia.  It's also becoming obvious that, as eloquent as I was, I didn't use my speech for the purposes other kids do and some times wouldn't engage at all; sometimes not with my parents and certainly not with the doctor who wanted to specifically check on my speech development at two. I blanked her totally and refused to utter a word for the whole session.  The doctor was very concerned I was so unresponsive, but my mother cheerfully and truthfully told her I could speak in complete sentences.   Her stories of conversations with me are all about me information gathering or communicating functional wants and needs.  There's almost nothing about social interaction there at all.  My mother would have had no way of knowing that any of that was in anyway different to other children. She just thought I was a "very serious" child who was "very selective" about when and why I spoke and to whom.

    With luck your assessors will be wise enough to focus on you and/or skilled enough to gently probe at what's behind her perception of "normal". I'm sure they have come across a disparity between patient and parent perception of the developmental stuff many times before.

    Good luck

  • That is really interesting about your speech development and it's great that you were able to recover these memories of what you were like as a child. I studied child language acquisition too, as part of my degree, funnily enough, years ago. I found it fasinating. Are you trying to get a diagnosis too? I wish I could go back and see myself again! 

  • Yes, I'm going through the process and yes, if only I had recordings to go back and analyse my own speech, lol.  My mother is now 80, not in the best health and it's becoming difficult to keep her 'on topic' in a conversation these days, but her memory is pretty reliable.  Having filled in the developmental forms from my perspective, I'm now spending hours going through the questions again with her. I am mindful, that come the assessment, she may no longer be in a fit condition to participate.

    I can't quite get at aspects of syntactic development with her. She wouldn't really get what that meant, but there are some aspects of her stories which have never added up; specifically that I used to stare intensely at people's mouths and silently copy the lip movements of a word, endlessly practicing before I would pick up the courage to say it. It was then bang on perfect and sounded adult first time out. Whereas most babies babble their way through all the phonemes, then are driven by the wish to communicate just start having a bash at words even if it's not quite there and I've never heard of one engaging in all that study, copy and deliberate practice.  Apparently, even though I would not yet address this new vocab to people (and social interaction is normally a primary driver), I would talk to the wall, my mother thinks to the animals on my wall paper.  So, I'd talk to something that can't answer me back, but not a person?? 

    I also remember that I was bullied in school for sounding "posh".  The vocab was vast and I didn't use the local kid's slang, but more importantly, I have NO accent.  You can't place me anywhere socially or geographically.  That too has always been a head scratcher for me, I SHOULD have at least traces of the strong local accent, acquired from all that supposed socio-linguistic imperative to accord and build relationships with my peers. I don't.  Neither do I sound like my broad Geordie parents. And I've always known that's not usual, but could never explain it until I came across ASD people reporting the same thing linking it to Echolalia. Oh! There, I think, is my explanation.

    So yeah, mum is proving to be an unwitting gold mine of information.  However, were she to be asked just simply 'did Dawn have difficulty learning to speak?', she'd just say 'no, she spoke early', with no way to know my processes were any different to any other baby.  I'd be interested to know if other people have reports of similar processes.  Perhaps, I'll post that as a question.

Reply
  • Yes, I'm going through the process and yes, if only I had recordings to go back and analyse my own speech, lol.  My mother is now 80, not in the best health and it's becoming difficult to keep her 'on topic' in a conversation these days, but her memory is pretty reliable.  Having filled in the developmental forms from my perspective, I'm now spending hours going through the questions again with her. I am mindful, that come the assessment, she may no longer be in a fit condition to participate.

    I can't quite get at aspects of syntactic development with her. She wouldn't really get what that meant, but there are some aspects of her stories which have never added up; specifically that I used to stare intensely at people's mouths and silently copy the lip movements of a word, endlessly practicing before I would pick up the courage to say it. It was then bang on perfect and sounded adult first time out. Whereas most babies babble their way through all the phonemes, then are driven by the wish to communicate just start having a bash at words even if it's not quite there and I've never heard of one engaging in all that study, copy and deliberate practice.  Apparently, even though I would not yet address this new vocab to people (and social interaction is normally a primary driver), I would talk to the wall, my mother thinks to the animals on my wall paper.  So, I'd talk to something that can't answer me back, but not a person?? 

    I also remember that I was bullied in school for sounding "posh".  The vocab was vast and I didn't use the local kid's slang, but more importantly, I have NO accent.  You can't place me anywhere socially or geographically.  That too has always been a head scratcher for me, I SHOULD have at least traces of the strong local accent, acquired from all that supposed socio-linguistic imperative to accord and build relationships with my peers. I don't.  Neither do I sound like my broad Geordie parents. And I've always known that's not usual, but could never explain it until I came across ASD people reporting the same thing linking it to Echolalia. Oh! There, I think, is my explanation.

    So yeah, mum is proving to be an unwitting gold mine of information.  However, were she to be asked just simply 'did Dawn have difficulty learning to speak?', she'd just say 'no, she spoke early', with no way to know my processes were any different to any other baby.  I'd be interested to know if other people have reports of similar processes.  Perhaps, I'll post that as a question.

Children