Assessments for Specific Learning Impairment associated with autism as an adult

Camellia

Hi 

Bit of a tricky situation. Do not want or expect violins just some suggestions as to how I can make the best of my situation going forward. 

I had my parents withhold my autism diagnosis as a child so next to no support - kept trying harder and harder to cope until I burnt out; could not maintain employment without compromising my mental and physical health due to the additional time and effort I had to go to to work to standard - resulting in my needing to work several additional unpaid hours a day just to keep my then job. 

Things completely broke down in my 40s and this culminated in my being belatedly formally diagnosed as being both dyspraxic and autistic as an adult but this doesn’t explain other issues I have - I have been told I likely have Irlen’s syndrome and going by what I have read I also believe I match almost all the criteria for non verbal learning disorder (not that well recognised as a condition to my knowledge).

It was advised by a private OT that I get a full cognitive profile done as a starting point. I am currently living on ESA and PIP and do not wish to risk my financial stability by attempting to work again without the supports and protections I need. If I could readily afford to get such an assessment done privately, I would go get one. 

Is it possible for someone like me to access a full and proper cognitive profile through an Ed Psych or suchlike as an adult - through either the NHS or Social Care?  

Do I as an adult have a right to such help given that I am obviously not low IQ yet at the same time have suspected specific learning impairments which affect my ability to function in higher education and/or a graduate level job? 

If school age children are eligible for such assessments; why aren’t adults? 

anisty

It would be a clinical psychiatrist - educational psychologists are there only to assess, advise and help ensure that children can access education up to 16 (i think)

I don't see why you couldn't approach your GP and ask for a referral tbh.  But i don't know the answer to your question for sure. I just can't see why not.

Camellia

Is there anybody who knows about autistic adults being able to access assessments for specific learning impairment through either the NHS or the LA who can comment? 

With regards to simply asking my GP I couldn’t even get a referral from my GP for an autism assessment (had to in the end get my then psychiatrist to make the referral then had to use an advocacy service and health watch to fight for it - after a wait of over 3 years). 

L_Volunteer

You have done so well to acknowledge and express how you have been doing @Camellia and how this has affected you.

How are you currently feeling about the idea of having a full cognitive profile done? It sounds like you are hoping this will help to inform your future support and protection.

Whilst I acknowledge you are not wishing to have a full cognitive profile for dementia/Alzheimer’s, the research relates it back to dementia and Alzheimer’s.

I have done a search for you. Two resources that seem semi-useful are the NHS website and Alzheimer's Society.

Overall, it seems that:

• You would speak to your GP in the first instance
• Your GP will refer you to a clinician if they agree a full cognitive profile could be useful

This would also apply to getting a diagnosis of non-verbal learning disorder.

In terms of getting a diagnosis for Irlen’s syndrome, you would need to see a specialist Irlen screener (Irlen UK). Though, your optician could signpost you to this or at least temporary support.

I hear your frustrations though. You deserve to have access to answers and subsequent support and there do, unfortunately, seem to be gaps in service. 

Please don't hesitate to let us know if we can do anything else to support you. We are all here for you and listening to you at the very least 

Camellia

Hi L Volunteer, 

After reading your response just now and despite dreading being dismissed by my GP; I think I do in fact need to seriously consider putting together as strong a case as I can for my GP (or someone else at the practice) - have a written report from the private OT clearly stating that she believes I need a full cognitive profile done I could take in with that bit highlighted as well as take some print outs on the most authoritative journal articles or blogs by cognitive neuropsychologists I can find on non verbal learning disorder with the criteria for it that apply to myself highlighted.

I have also through googling last night found that NVLD is in fact recognised and has its own formal code in the new ICD 11 (ICD stands for the International Classification of Diseases) so will print out that bit of the ICD 11 and highlight the bits I feel apply to myself and write out how this applies to my life by providing concrete day to day examples - such as you have to do in order to be successful in getting PIP (Personal Independence Payment). 

By preparing to a ridiculously in depth level and taking an advocate with me (if I can find someone as an autistic person without obvious intellectual impairment) I will hopefully have a chance 🤞of my belief that I may have NVLD taken much more seriously- my problem is because I am so verbal people cannot believe what a struggle I have with aspects of my learning particularly non verbal learning such as learning to drive or use a computer at more than a very basic level etc. (Passed my driving test by fluke after 7 or so attempts and making the driver instructor quite rich but kept having accident after accident so no longer drive for safety reasons). 

Also for the benefit of other autistic or otherwise ND people who may have visual processing issues due to Irlen’s Syndrome; a couple of years ago I found out about Bradford Uni having an ophthalmology department that has ophthalmology student clinic where you can get assessed for it much more cheaply (compared to seeing a private clinician) and good to know it would be presumably be overseen by a lecturer with very up to date expertise in it. This is obviously great for people in West Yorkshire but ? there may be other unis who may also have such a clinic. This is another thing I have to get my act together with and success with that could help me have a stronger case for the NVLD - which includes visual processing issues. 

Sorry this was so long - hope it could be helpful for others with similarly “invisible” issues to do with
learning and thank you for your input today and the hope it has given me as I have been very daunted by this. 

L_Volunteer

Ah, yep, I am familiar with the ICD and DSM @Camellia. Self-advocacy is super important.

As an autistic adult, I completely hear you with not having specific difficulties validated. I empathise with you.

Please don’t apologise. It is really positive that this is a space you feel comfortable sharing in.

I am sure your experience will be invaluable for anyone experiencing anything similar. Please remember that we are here to support you too though.

You don’t have to face any of this alone if you don’t want to. Please don’t hesitate to let us know if we can do anything else to support you 

Camellia

Thanks++ for that, not used to having anyone “get” the “invisible” issues associated with ND. May be back here if I still struggle to get a referral or if anybody wants to know how it worked out. 

L_Volunteer

A benefit of being ND myself @Camellia! We will be more than willing to support you further and hear how you get on with it all 

durhamjaide2001

I got my diagnosis on my 18th birthday 

Camellia

durhamjaide2001 said:

I got my diagnosis on my 18th birthday 

Hi Durhamjaide,

Do you mean a diagnosis of NVLD Non Verbal Learning Disorder or an Autism diagnosis? 

anisty

Thanks so much for your information there about Irlen's syndrome @Camellia - not something I had come across before but my youngest daughter (15) has had perceptual problems and blurry vision for many years and no one is taking it seriously or doing anything about getting to the bottom of it. When she gets home from school today, i will see if any examples on the Irlen's site match what she is seeing.

I know it is very, very difficult to get past GPs sometimes but, unfortunately, they are the gateway into seeing most other NHS professionals.

All the best.

Camellia

anisty said:

Thanks so much for your information there about Irlen's syndrome @Camellia - not something I had come across before but my youngest daughter (15) has had perceptual problems and blurry vision for many years and no one is taking it seriously or doing anything about getting to the bottom of it. When she gets home from school today, i will see if any examples on the Irlen's site match what she is seeing.

I know it is very, very difficult to get past GPs sometimes but, unfortunately, they are the gateway into seeing most other NHS professionals.

All the best.

I found out about it through a private OT assessment (dyspraxia UK have a group of private OTs and was very impressed with the OT I got through them), the opinion of an educational professional who is autistic herself with an interest in autistic intelligences and writing a book on it and had it confirmed with a very rough and ready screening by an optometrist - my reading speed and comprehension improved noticeably with a tinted overlay. I will be self referring to the opthamology department thing at Bradford Uni if they are still doing the assessments to hopefully get a much more in depth assessment. 

Have never heard of anyone getting help for it on the NHS as it is a condition that is quite contentious for some mainstream professionals and to my knowledge is not on the “menu” of available NHS treatments. I haven’t been googling it if late so apologies for not being able to be more helpful at this point in time. Maybe you could start a discussion point asking others about their experiences of possible Irlen Meares Syndrome as they may know more. 

Just googled just now and was pleasantly surprised there could in fact be something NHS recognised for such assessments, maybe things have improved these past couple of years - I am not sure if it is that useful for you personally as it may be too far from you 

https://www.nhs.uk/services/service-directory/irlen-centre-southwest-and-south-wales-gloucestershire/N10498678

Here is an article by someone for the National Autistic Society on this topic with further references 

https://www.autism.org.uk/advice-and-guidance/professional-practice/irlen-syndrome

anisty

Not at all - you have been very helpful. Interestingly, many years ago (about 15 years ago) we took all our children (the 15 yr old might not have been born, or was a baby so it was the older 4 kids) to an optician in Ayr who had a controversial method using coloured lenses to help with dyslexia and reading problems.


Our eldest son is not dyslexic (none of our kids are) but he is moderately - severely dyspraxic. He had huge amounts of OT input as a child.

He is very bright and learned to read easily enough but struggled to cross the mid-line on text, or jumped to a line above or below. A

Actually, i seem to remember it being the older 3 that were tested. The 4th must have been just a toddler.


The tests were fun but rather odd - one involved chewing a toffee and reading!  Anyway, they all got prescribed coloured lenses. The 2 boys never wore theirs but our eldest daughter loved hers and they really helped her.


Later, the optician we had been to got some bad media press. He worked from a premises with his wife. She was a qualified optician. He had no qualifications in optometry.  His methods were discretited.

So - your info is bringing back a lot of memories for me and i am tying things together.

My 15 yr old gets on well at school but she has been complaining of moving text and blurry vision, seeing double and such for years. Optician says all well and GP useless.

There's not a chance she will be able to ever learn to drive with the problems she describes to me.


Also interesting, i myself haven't got the best visual processing. I do drive. Ok by day but, since the age of about 40, my night vision is shocking and i largely avoid driving at night. Especially on rural roads, where all i can see is lights coming towards me!


Thanks so much for mentioning Irlen's. I think we might be onto something here for my daughter. 

anisty

https://www.ayradvertiser.com/news/16083145.ayr-optician-struck-off-experimental-autism-work/


This was the bloke we saw - such a pity he was struck off or i would be hoofing it back to Ayr to see him. He was actually very good!

Camellia

@anisty hope you manage to get the help she needs. I cannot drive safely and it is thought that visual processing issues are a not insignificant factor. The OT I saw also did the Beery Visuo Motor Integration test and my skills in that are also pretty lacking. 

Camellia

anisty said:

https://www.ayradvertiser.com/news/16083145.ayr-optician-struck-off-experimental-autism-work/


This was the bloke we saw - such a pity he was struck off or i would be hoofing it back to Ayr to see him. He was actually very good!

Poor guy - maybe the issue from the GOC is what are the boundaries of being an optician versus an optometrist or ophthalmologist (or neurologist with expertise in visual processing issues). 

I do not know enough about this sort of thing to be able to draw any meaningful conclusions. It is good you brought it up and makes me more aware of the need to ideally see an opthamologist with the relevant expertise for such a diagnosis  to be taken seriously. 

anisty

Thanks @calcotti - it's a bit reassuring in a way because i really have been starting to wonder if she could have something serious like a brain tumour - with this blurring vision. I just couldn't understand why the doctor wasn't more concerned and of course she is at that age where she goes herself to the GP and they won't speak to a parent.

At least with this, my fears of her having some life-limiting brain condition might ease a bit. . . .