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Use this forum to discuss neurodiverse parenting.

NHS ASD assessment. Hit a wall with paperwork for adult.

10 replies

AarghAgain · 11/10/2022 13:34

This is mainly a vent, and not expecting anyone to solve this for me, just need to vent and sorry it is a bit of a long one. If anyone has any thoughts would love to hear them.

Have name changed as haven’t spoken to anyone about this IRL, and don’t want this connected to any of my other posts.

I have suspected for a while that I reside somewhere on the spectrum. Without going too much into detail, official diagnosis would have some practical implication to my life, so in a process of seeing if that would be possible.

With my local authority the process is that you need to fill in a self assessment (Cambridge scale & something else) and get a parent or guardian to fill in a detailed form about childhood development.

And this is where my problem comes in. I am in my mid 40’s, and have a slightly complicated relationship with my parents, who divorced when I was a child. We live in different countries.

Asking my father to fill in the form is out of the question for various reasons.

My relationship with my mother is good but guarded. She has a history of gaslighting me & my siblings to make events fit how she wants them to. For example there are circumstances around my parents divorce that me & my siblings remember clearly, but when asked, my mother point blank denies they ever happened.

So when I asked her to fill in the form, I emphasised how important it was for me, and how she should answer truthfully and neither attempt to protect me, or ramp things up for an effect.

She does not believe I am on the spectrum, I don't think she believes spectrum exists in functional form.

She has sent the form back to me filled, and it is a perfect story of me as the easiest, loveliest child known to mankind without any quirks. The only section where she goes into detail is to talk about a childhood bed wetting incident to embarrassing detail.

My memories of my childhood just do not match what is written out. For example, as long as I can remember, I have not sought physical contact with others (hugs/cuddles), and remember actively resisting it on several occasions. She’s written down something along the lines of ‘loved cuddles and actively sought physical contact as child.’

I also was prone to frequent spectacular meltdowns as s a child. I remember a lot of these, and they have been referred to in conversations with both of my parents since my childhood. She has written down that I ‘got little bit upset when hungry or tired’. Previously she has spoken about me having ‘bang head against the wall’ type meltdowns that lasted until I exhausted myself. So I know she remembers these and agrees they happened.

I just don't know what to do, and feel that this is probably the end of the road seeking assessment. I can not send the form as it is, they would have one look at it and scrub me of the list. Faking it to fit my own memories just really does not sit well with me. I could do it on the paper but would need to fess up in face to face appointment and the thought of it makes me tense.

I can’t speak to my mum about this, she’ll just deny everything. I’m now kicking myself I did not just take her by surprise and read the questions over the phone any transcribe her answers there & then.

OP posts:
EmmaT93 · 11/10/2022 15:15

I didn’t have a suitable adult. My husband was able to answer some questions about how I am now and that was sufficient in my case. Would a sibling be able to confirm your memories or an aunt, cousin etc?

BoardLikeAMirror · 11/10/2022 17:29

My parents' health is too poor for them to complete forms. My assessment was private, not NHS but I simply filled it in myself based on my recollections, and made it clear I was completing it on that basis (I.e. not faking). There were some questions I had to leave out relating to how I was as an actual baby, i.e. before my memory kicked in, but everything else I answered to the best of my recollection.

Asparagoose · 11/10/2022 18:17

Just say you are estranged from your parents, or they’re deceased, or have dementia. Lots of reasons why they can’t fill in the form.

HouseBook · 11/10/2022 19:51

You filled mine in myself - I was diagnosed privately but the questions are the same. I have as much as I could and for many things we knew 'normal development' applied as being late to speak etc is usually something your parents would mention. They were able to draw some box ticking criteria from some of the basic answers I had. It all does together to form a bigger picture. Have you spoken to them about not having an appropriate adult to fill it out? This definitely doesn't have to be the end.

BrightWater · 12/10/2022 12:14

I have just been through an NHS assessment and I did not have a parent or anyone who has known me since childhood to provide that background information. They were happy with my partner filling it in even tho we have only know each other since I was in my 30s. They also said that it would not matter if I was unable to find anyone for this section. The assessments are very thorough and the childhood questions are just one part of it. Please do not worry about this. Please pursue the assessment if you believe it is right for you. And please continue to post on this board if it helps. I have found the support here invaluable and I was diagnosed last week. All the very best.

Clarice99 · 12/10/2022 20:57

I didn't have any input from my 'parents'. Both of them were abusive to me in childhood and beyond. He is dead, and I am NC with her. I told the assessors this, they didn't push any further and were happy with input from my DH.

AarghAgain · 13/10/2022 12:54

Have been hiding from the whole thing this week, after falling in a trap of circular thoughts about it for a day or so, and all these supportive replies are such a lovely supprise!

Thank you everyone, much appreciated and pushing me to what I hope is the right direction. You bunch are awesome and will definitely keep this board in mind when I need support / brains to pick.

I think what I'll do is ask a specific adult who has known me since I was born to have look at the form and see if she could give any input. She is very practical, so although she was not around much, there might be some examples she could give. Sadly my siblings are not an option due to reasons personal for them.

And will then fill in the form making sure which sections are my memories, which from other adult, and which I have been told previously by my parents in different context.

Although it would obviously be better if everyone in the world had reliable supportive person to fill a form like this, I feel much less like a fraud & less alone after having read short clips of your stories. Thank you for that.

OP posts:
BrightWater · 14/10/2022 05:05

AarghAgain · 13/10/2022 12:54

Have been hiding from the whole thing this week, after falling in a trap of circular thoughts about it for a day or so, and all these supportive replies are such a lovely supprise!

Thank you everyone, much appreciated and pushing me to what I hope is the right direction. You bunch are awesome and will definitely keep this board in mind when I need support / brains to pick.

I think what I'll do is ask a specific adult who has known me since I was born to have look at the form and see if she could give any input. She is very practical, so although she was not around much, there might be some examples she could give. Sadly my siblings are not an option due to reasons personal for them.

And will then fill in the form making sure which sections are my memories, which from other adult, and which I have been told previously by my parents in different context.

Although it would obviously be better if everyone in the world had reliable supportive person to fill a form like this, I feel much less like a fraud & less alone after having read short clips of your stories. Thank you for that.

I am so glad that you are feeling a bit brighter about things. Please never lose sight of the fact that you are as worthy of, and as entitled to, answers to your questions as anyone else is Flowers

Clarice99 · 14/10/2022 08:37

AarghAgain · 13/10/2022 12:54

Have been hiding from the whole thing this week, after falling in a trap of circular thoughts about it for a day or so, and all these supportive replies are such a lovely supprise!

Thank you everyone, much appreciated and pushing me to what I hope is the right direction. You bunch are awesome and will definitely keep this board in mind when I need support / brains to pick.

I think what I'll do is ask a specific adult who has known me since I was born to have look at the form and see if she could give any input. She is very practical, so although she was not around much, there might be some examples she could give. Sadly my siblings are not an option due to reasons personal for them.

And will then fill in the form making sure which sections are my memories, which from other adult, and which I have been told previously by my parents in different context.

Although it would obviously be better if everyone in the world had reliable supportive person to fill a form like this, I feel much less like a fraud & less alone after having read short clips of your stories. Thank you for that.

Sounds a good plan to ask a practical adult to assist.

People (family) often have their own version of events that's completely removed from reality your experience, so trust your own judgement and with input from the person you have in mind, hopefully you will be able to complete the task.

Best wishes 🌷

Jenn3112 · 16/10/2022 00:32

I got a diagnosis recently without any input from anyone else. I only have my Mum and it would have upset her to much to do the form for various reasons so I just said there wasn't anyone, and they did it based on my recollections. I would say though, if you have anyone who you can talk to about the whole thing then do, I am still processing my diagnosis a few months after I got it, and I think not having anyone to discuss it with is making me go round in circles in my head. I thought it would be somewhat of a relief to have a diagnosis and it really isn't.

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