NHS Scotland

Daisygirl - apologies our helpline is difficult to get through to. They can also be emailed on autismhelpline@nas.org.uk

Longman - those contact details are particularly easy to find through that link, so I'll leave them up there. As for the NAS, we know we're a way from having the support that adults deserve, but autism certainly wouldn't be a clinical priority or a policy issue without us. 

I think your hypothesis about adults with autism is broadly correct. But these are things we have to try to change, so we don't just continue to be stuck with entrenched past misconceptions.

We may have to do this without the help of NAS, which is a blow. But NAS is still primarily a parents' group. It may campaign for adults but I'm not sure if NAS is sufficiently committed to change for adults.

One thing you can do now is write to this Jane Cantrell, pointing out what happened to you. But copy it to Scottish Ministers (scottish.ministers@scotland.gsi.gov.uk ) requesting at the start of your email that it be referred to both Alex Neil MSP (Minister for Health and Wellbeing), who looks after NHS, healthcare workers and their training, and Michael Matheson MSP who is Minister for Public Health, and looks after patient care. Copying in these ministers via the Scottish Ministers email address will, I assure you, make absolutely sure your concerns are addressed.

For postal communications Scottish Ministers are at St Andrew's House, Regent Road, Edinburgh EH1 3DG. I've given you Jane Cantrell's postal address in my previous posting.

Explain that you have autism, that you had someone present (your mother), and that your circumstances were made known, and demonstrate concisely how they let you down, both in terms of understanding autism, and the non-autism aspects of care you mention. 

Backing up a complaint with referral to specific Scottish Ministers will usually get things moving. It may not get exactly what you want, but it will ensure a shake-up at Hanover House, Rose Street.  That in itself may be some satisfaction.

That guide for patients with autism, while it had some good points, really isn't fit for purpose.

I wish NAS Mods were listening, because really NAS should be protesting for you, but let's face it, apart from sending plastic cutlery sets to wind up MPs I'm not sure that NAS "has its eyes on the ball".

Thanks for that link Longman.

I just don't know what to do. I have tried to get through to the NAS helpline but it is always busy. I have no confidence in healthcare professionals any more so I feel I have no access to medical care now. They have made so many mistakes (not related to my autism) and I just don't know where to turn. All charities seem to be geared to children or don't help individuals.

I actually think it is impossible for ASD adults to live in this NT world. No-one is prepared to understand what autism is, and the so-called autism professionals are producing poor materials for training, or are only interested in children and SEN stuff.

I think ASD adults are totally alone and abandoned.

I wonder whom this site was meant for? www.nes.scot.nhs.uk/.../learning-resource-on-autism-spectrum-disorders.aspx   (I hope I transcribed this long winded URL correctly).

It links to http://asd.nes.scot.nhs.uk/  Trouble is the first chapter goes to five pages on the triad of Impairments. I blame NAS for this. The triad is a diagnostic tool not a definition of day to day life with the condition!  Then you look at the description of a young person with asperger syndrome: "difficulty in using speech for communicate wishes or needs" - clearly the report was written by an illiterate! Also read the case study "old child Harry" aged 10, and the many other case studies - are these helpful I wonder?

The advice on adults is more useful but lacks detail.

There's a section on stress: "the way in which patients with asd may display signs of stress and anxiety may not differ greatly from anyone else" is not a great start. They just explain standard stress indicators. So what is the point of writing a guide to helping autistic patients if this is the best they can come up with? But of course the Triad doesn't cover this, so it is hardly surprising.

On strategies for encouraging communication it says: "the impact of the triad of impairments, on the acquisition, use and understanding of language can be substantial in the patient with ASD".  The trouble is one minute they are describing a person with mild aspergers, the next it is someone with full severe autism - there seems to be no distinction. The training package is a hotch-potch of very badly written poorly understood derivative nonsense.

"The patient with an ASD who has good vocabulary and speech may still not use it to communicate"

Daily Life Skills: "children, and some adults, may present with particular problems in toileting, constipation and incontinence".

Females and ASD: this is actually better informed than most of the document - worth reading.

It is easy to understand lack of understanding amongst hospital staff with such poor and conflicting resources. I suspect they largely have the view, prevalent across the NHS, that they only treat severe cases, and treat milder cases as malingerers. That's how it comes over.

The contact is one Jane Cantrell, Programme Director, NMAHP, at 3rd Floor, Hanover Buildings, 66 Rose Street, Edinburgh EH2 2NN (NAS MODS am I allowed to post these details?) jane.cantrell@nes.scot.nhs.uk  I think if you've had the appalling treatment you describe, this is the person you need to take it up with, in the first instance.

But I persist in my opinion that the problem lies in using the triad of Impairments to define day to day living with autism. It should only be used as a diagnostioc tool to distinguish autism from other factors. It is grossly irresponsble to build patient support guidelines around the Triad.

Also why does Scotland always have to do things differently, just for the sake of it? Why not just use UK national guidelines. Re-inventing the wheel is more than likely to multiply misunderstandings.

I say that as a Scot, born and raised and educated there, just nowadays live south of the Border. There this notion "whaur's like us?" that leads particularly to not doing things the English way. But in trying to be different, all to often the outcome is wrong. And there are high-ups in Scotland just wont be told that they are totally in the wrong - its a Scottish hang-up not being able to control some idiots at the top.