Relative’s questionnaire

Hi, all - just joined the forum as I’m in the process of being assessed. I’m a female in my early 50s and have had the initial chat with GP; done the AQ10 with them; had a follow-up appointment with the local primary care mental health team where we discussed the AQ10 in much more detail. The practitioner has referred me to our local NHS autism clinic as she agreed I have very strong autistic behaviours and scored highly on the AQ10. I’ve now just filled in all the paperwork and questionnaires for the autism team. I hadn’t told any of my family that I’m being assessed as I don’t feel comfortable and I thought they would find it hard to believe. I didn’t struggle too much academically when I was younger; I’m highly creative and love reading and writing so always did well in the arts-type subjects. I really struggle with maths - I still have to count on my fingers for basic arithmetic and have always thought I’ve had numerical dyslexia (a term I’ve made up) because I can’t do mental arithmetic at all.

Anyway, my dad is my only surviving parent and is nearly 80. He’s in good health but the clinic has said that I needed a relative to do that part of the questionnaire otherwise they may not be able to progress with the assessment. I was dreading this and dreading telling him even more - he is the sort of person who will come out with nonsense such as “people only come out as gay these days because it’s the fashionable thing to do”, etc - not particularly helpful, and probably extends to those with mental health issues. When I approached him, he was very surprised about the assessment, but after a chat about how I’ve felt all my life and how odd and different I feel, he was more understanding.

Unfortunately, we are talking about events from nearly 50 years ago so he struggled with lots of the questions as they were asking things like whether I used the word “I” instead of “they”, and whether I could count to 50 without missing out numbers. Obviously his view of what sort of child I was is very different to how I felt, so after he filled in the questionnaire to the best he could, I sound like a perfectly normal child with no issues. To him, I was a tomboy who wanted to be a boy, who wouldn’t dress up, had really odd interests, and was a bit quiet. Obviously, that isn’t how I felt - I’ve never wanted to be a boy; it was a label my parents gave me because I was only interested in dinosaurs, archaeology and football, and I wouldn’t hug or want to be hugged by anyone, and that’s how boys act. 

I’m just wondering how this will look to a professional. My dad’s account of who I am looks perfectly “normal” and probably wouldn’t raise any flags. How I feel, however, is very different. Will a professional dismiss my assessment as lots of people with autism struggle at school, ano in their early years, and I didn’t?

Have any of you been in a similar situation and, if so, how did it pan out with your assessments?

Many thanks for reading x

Parents
  • When I did my questionnaire recently I did discuss that I had been labeled as shy as a child, but that I thought it went further than that and that a lot of the things I had difficulty with I would have kept to myself. I'm 37 and my Mum (early 60s) filled the observer questionnaire out. I think she is a little skeptical of whether I am autistic or just shy and lacking confidence, but I explained about all of the things that I struggle with and keep to myself. We had a really good conversation about it and she talked about some of the things that she wasn't aware of or couldn't remember that had come up on the survey. For a lot of the "do they do x or do they lack y" type questions there were a lot of responses that she said "not sure" to. I hope that when our responses are considered the consultant will be able to see enough evidence in the written responses to then try to develop a little further in the meeting part.

    We have only just summitted these questionnaires - I'll let you know when I find out if they are going to progress to the next stage.   

    Good luck.

  • Thanks for your responses. My dad can hardly remember anything from when I was little. Even when I was talking to him about the questionnaire, he was looking through it and when he saw the question about whether I took everything literally, he said yes, that’s me. But when he filled in the answers, he put no against that question. I don’t think he’s particularly reliable, which is what worries me - especially if his views are vital to a diagnosis as he kept contradicting himself. Oh well, I suppose I wait and see what the autism clinic thinks.

  • maybe you should speak to someone at the clinic and explain your concerns about his reliability. My hope is that there is enough on the responses for my referral that they can tick enough of the boxes to move on to the next stage, even if the observer response doesn't quite capture the full picture. I have no idea whether that is how it works or not, but it's what I'm telling myself. 

    Does the other response have to be from a family member? I queried this as mine said "someone who knows you well, ideally since you were a child". I asked them which bit was more important as I have someone who knows me really well AND someone who knew me as a child....they're just not the same person! Maybe you could also submit a response from a close friend or partner?

    Definitely speak to the clinic though. I did for mine and they were quite good at advising and reassuring me.

  • Thanks, that's really reassuring. I had hoped that the bulk of delving into the details would be in the actual face-to-face assessment. I was filling all of mine in a bit like a covering letter for a job - making sure I've given an example of all the relevant points I think they'll be looking for etc. I'm actually quite looking forward to having a conversation that is led by a professional who knows what they want to find out and asks all the right questions. Some of them on the form are quite open to interpretation.  

  • I'm not sure whether they would decide not to proceed any further on the basis of the forms. I recently saw a video on youtube about the diagnosis pathway from the lancashire autism service, and they did say that sometimes you get people who score low on the forms simply because they have no awareness, yet are quite obviously autistic when they go in for a meeting. Though they did also play up the importance of being able to speak to someone who knew you as a child. I guess they may contact the parents for a more extensive interview later in the process? I've not gotten that far yet.

Reply
  • I'm not sure whether they would decide not to proceed any further on the basis of the forms. I recently saw a video on youtube about the diagnosis pathway from the lancashire autism service, and they did say that sometimes you get people who score low on the forms simply because they have no awareness, yet are quite obviously autistic when they go in for a meeting. Though they did also play up the importance of being able to speak to someone who knew you as a child. I guess they may contact the parents for a more extensive interview later in the process? I've not gotten that far yet.

Children
  • Thanks, that's really reassuring. I had hoped that the bulk of delving into the details would be in the actual face-to-face assessment. I was filling all of mine in a bit like a covering letter for a job - making sure I've given an example of all the relevant points I think they'll be looking for etc. I'm actually quite looking forward to having a conversation that is led by a professional who knows what they want to find out and asks all the right questions. Some of them on the form are quite open to interpretation.