Accessing NHS Medical Records

I would not know to look in ADOS because I've never really been sure what it is. So youve made my connection a bit clearer.  Cheers!

I did an Early development  questionnaire for the assessor and it did ask about spinning things particularly, which is how it got into my mind to start with. Cartwheels and roundabouts and propelllors and the like.

As an adult it looks a bit weird so I imagine doing it in my head. 

I always used to spin round loads when I was a child. I also used to enjoy going on swings for hours or roundabouts really fast for a long time. My two year old who's having her first autism assessment next Tuesday, can't walk to well yet but she will sit shaking her head from side to side for half an hour plus which would give the same sort of vestibular stimulation that would be achieved by spinning/swinging/going on a roundabout.

Yeah! I thought it sounded familiar because that question stuck in my head because I didn't know how to answer it. I used to love spinning around but now as an adult it makes me feel ill!

So I quickly checked on my phone because I'm sad and obsessed so I have all the tests open in internet browser windows. I searched for the word 'spin' and hey presto, there it was!

Is it really? That's very interesting. Thanks

Do you enjoy spinning in circles is a question on the rdos test so there must be some significance. 

Aha! Re-reading my medical notes just now. Remembered how I got an injury to my mouth when I was 2 years old. It needed stitches so there is a note. I was whirling round and round like a dervish quite feverishly. Ignored warnings to stop because it was dangerous. Lost my balance and hit my mouth on the furniture. Does  that sound autistic or not? Still have the scar

Thank you for your info. 84 is quite impressive for a diagnosis. Good for them for getting it sorted.

I do not know what the next step is. I will try to retrieve my baby medical records just for my information,  and otherwise just wait for a follow up letter from the centre about my next appointment. I know how long these things can take so I will just get on with my life for now as if nothing is happening. I am certainly not writing up the War & Peace of my childhood unless I know there is a point. It might be a total waste of time. 

Best x

I'm glad that your notes have been referred for a second opinion with someone with more specific knowledge. It's a pity, and a complete waste of time, that you were referred to the assessor who now needs to ask for a second opinion. I know of an adult being diagnoses at 84 (yes!) so surely there was no evidence from his childhood. I think your first assessor is perhaps being over cautious, especially as you suspect they have no particular knowledge of adults. 

Would you be able to meet with the person reviewing your notes? Or are they just expecting you to magic up some childhood evidence? 

I think most NHS assessors also work privately. The particular one I saw does. She is a speech and language therapist but also a registered psychologist. She claims on her website to specialise in adult female diagnosis, but from ny experience so far I doubt it. What I have gathered is that if you are assessed via NHS there is a network of second opinions available via contracts with other bodies. This is where my assessment is at now - my case notes are being reviewed by someone with specific experience of diagnosing older females and has about 48% chance if positive diagnosis statistically. Along with this i am supposed to find more information from my side. Hence the quest for historical records. 

With regard to the hearing test i think its the clearest evidence I have so far of communication difficulties. I was an excellent reader and talker so I obviously could hear.

Thanks for your reply. I am really in a quandry here. I will not involve anybody else in my assessment, so it looks like I must do all the talking myself. Nothing has really convinced my assessor. Is it even worth persuing diagnosis at my age? Sigh....

Hi, I've belatedly read this thread with interest. I'm 52, diagnosed last year. I didn't want my mum to be asked anything, we have a difficult relationship - but my husband spent an hour with the psychologist giving his impressions of me :). Unfortunately I had no long term friends to call on so my husband was the only additional support for my assessment.

I too was referred for a hearing loss test at aged 4. I had just started school and the teacher told my mum she thought I was deaf as I didn't answer or speak in class. My mum explained that she surely had mistaken which child she was talking about as her daughter was not deaf and  was a chatterbox at home.

Subsequently I had a hearing test which was normal, so I simply wasn't answering to the teacher. I specifically remember wearing the headphones in the hearing test, which annoyed me. I also had specific memories of primary school, particularly the very first year of primary school (it must have been such a shock I think) - horrible, itchy bench seats; kids spoiling the sand pit by spilling water in it so the sand was soggy (and me having a crying fit over it); at home constantly taking off my nappy and putting my clothes back on - must have hated the feel of the nappy; the day I got chickenpox; the texture of my grandma's sofa which was very bobbly and helped me scratch at the chickenpox on my back; the feel of those horrible woollen school tights...........

When I received my diagnostic report the psychologist stated that any diagnosis without early childhood evidence is given with caution but that "there was no other explanation or diagnosis that would accurately describe my current presentation and lifelong experiences" or something similar. Much of the 'evidence' I recalled from my childhood was replicated in the diagnostic report, which lends weight to my recollections being accurate.

I'm just wondering about the NHS assessors. Are they specialist is ASD, and particularly in diagnosing adults and females? Or are they a generic psychologist with no particular specialism? I was assessed by a lady who assessed for ASD in her NHS post (although I saw her privately as the waiting lists were so long). We took out a loan for the assessment - much better for us than waiting over 12 months.

Castle said:

If I get given instructions I have to say it back to my manager so I can fully understand what is required.

That's what I do. Adults were always at me 'are you deaf?'. Er no, I'm not so no need to shout. I know I don't take any notice of people sometimes. Hence the need to recap at work. I did hear I just didnt register the need to respond immediately. 

Thanks for your reply. I did register the need to respond! I'm glad it was of interest and I hope other people can gather something useful too.

I've read this thread with interest and I truly hope you get the answers you are looking for.

All I can say is I also had sensory problems with my hearing infact my mum recalled one of the neighbours saying to her to get my hearing checked as I appeared more deaf than her son who had hearing aids. When my mum used to shout me in the street it was my friend that had to alert me. Well turns out I ended up having grommets in when I was younger. But even after all this I still came across as ignorant.

My own conclusion as I got older I realised it was my brain processing that was rubbish and concentration. So if someone said something to me I'd ask them to repeat it then I could understand. It's the same now at work. If I get given instructions I have to say it back to my manager so I can fully understand what is required.

So I'm sure any hearing difficulties if you can find any in my opinion may help your case? I'm no expert though only recently diagnosed.

I slightly take back my rant above.

1. I have learned today that I have PANDAS  which is completely supported by whats in my health records.

2. I've learned from my records that somebody thought I was deaf however I never recall a loss of hearing, quite the opposite. And my hearing test said i was not hard of hearing so why was I thus described as deaf?

3. There are no records from before 5 years old. I need to specifically request these for the full picture.

Exhausted 

Hi Jonesy 

Thanks for your reply

I tried to get school records but they've been destroyed long Ago. I think the search for living teacher wouldn't lead anywhere. 

May be that I'll have to abandon the process if my own memories aren't enough. However, I don't think they should really be as important as they are made out to be at my age.

It's a failure of the process that I can't find this out because  I am a) very late diagnosis and b) a female c) an apparently functioning member of society d) fairly intelligent therefore quite good at masking.

Who cares what I was like 45 years Ago? I find it irrelevant.

This whole stupid game is ageist and sexist and stuck in the dark ages.

Sorry you haven't got anything useful out of the notes, very frustrating. 

You have probably already thought about this but... are there any of your school teachers still around? If so would they remember anything about you that might assist your assessment? Just a thought.

Conclusion to the saga.

I finally received my notes. Hardly any mention of childhood except the few things I already knew about operations and dates.

The hearing test I had appears to have been related to physical causes. The word 'deafness' is used as a symptom but progress is 'satisfactory' (meaning what?).

Pretty sure that many things are missing. No baby notes at all. I cannot be bothered persuing this further. There is clearly nothing there to assist me. Nothing much in the adult section of relevance either. 

Thank you to everyone who has shown their support in this thread . I do appreciate your time.  I wish it could have an exciting conclusion but it won't .

I'm not sure and I work for the NHS, what does that say!

Any assessor is better off going with the input of family or friends or anybody who knows you well.

Hi Kitsun

That's  really interesting and supportive of you to give your story. To be honest I am hoping what us in the records just settles the matter for me one or the other but they probably won't. We shall see....

Update: a reply my former GP practise on Monday.  They redirected me to my current GP. After an eternity waiting in phone queue I finally spoke to the practise manager at current GP and made it clear I need absolutely ALL my medical records from birth. She said she would do some digging online and get back to me. Still waiting.

It will be quite exciting to see my old baby records whatever they say. 

The assessor ‘should’ have been given access to your medical records, whether or not she has read them is another story. It was obvious from the things that my assessor was saying that she had read my medical records. I hope you can get hold of your own  medical records soon and hopefully find something helpful in them.

It’s understandable that you don’t want to pick through your childhood memories if that would be difficult. I only did so myself because I like to self analyse and also I needed to find my own historical evidence of being autistic before I asked the GP to refer me for assessment. I can’t go purely on how I am now as I also have an acquired brain injury so I have other neurological symptoms too. I needed to remember how I was prior to the brain injury and especially during my childhood to decide if I was truly autistic. Luckily my long term memory is still very strong.

The assessment process for adults is extremely flawed and, it would appear very stressful. Due to being a ‘complex’ case I got seen at the South London and Maudsley assessment centre (they specialise in complex cases) and had all my assessments and a verbal diagnosis on the same day, it was quite high stress but at least it was over and done with quickly. All the multiple assessment appointments that most adults have to go through seems extremely draining and unpleasant! The fact that many of us don’t have an adult that we would take with us to give an account of how we were as children further complicates the process. 

Good luck if you decide to pursue getting a diagnosis. But there’s also nothing wrong with self diagnosis, many people are happy to self diagnose.