Diagnosis of Children and Adults with ASDs - particularly Asperger syndrome / HF autism

Dear South West Essex Primary Care Trust (PCT),

Please, I would like to see all documents - minutes of meetings, reports, summaries, memos, statistics etc. relating to the policy, protocols, procedures etc. around the diagnosis of adults and children with ASDs in Essex. I would like to see any documents relating to liaison / discussion between PCTs across Essex, between NHS PCTs and Essex Education Department or other Essex departments,
e.g. Social Services, or Central Government departments or other decision-making bodies, on this matter.

Of those who present to you, asking for a diagnosis, what is the outcome? How many get a clear diagnosis? What are the other diagnoses, outcomes? How are these described? Who is responsible for diagnosing - what area of expertise? Please send any related statistics.

According to the NAS directory, when I asked: "There are no
resources classed as diagnostic services on our directory for Essex and Suffolk".

I would be very grateful if you could let me know of any official / valid diagnostic services that DO exist in Essex, that can provide a clear professional speedy diagnosis for either children and adults with ASDs - e.g. Asperger Syndrome or HF autism.

We have had people coming to our support group with no diagnosis, mis-diagnosis (e.g. schizophrenia) - and who had been given drugs for this for years, very late diagnosis, a huge and long long struggle to get a diagnosis, woolly diagnosis e.g.: a down-played diagnosis e.g.: "mild", "unusual early presentation", "borderline", "not a full-blown case", "autistic tendencies" etc ... which would not then allow them to ask for services or support with any confidence at all.

We still have people coming to our group who are in complete limbo - they don't know if they have an ASD / Asperger Syndrome, HF autism or not, or what they have at all, and do not know where to go and how to get one / what the route is. They feel very much on the outside of society / different / do not know where they belong.
There has been no one to give them any leads, clues, signposts as to what condition they might have. It still seems to be a matter of luck if they see the word "Aspergers" somewhere, or for the connection to "ASDs" to be made somehow.
E.g.: I met a young person in their early 20s recently who has no friends or social life, has never had a job, (failed completely by the education system), stays indoors on their computer, and said to us forlornly: "I don't know WHAT I am".

(Have you seen the coverage re: Gary McKinnon. I know he is not in Essex, but because he obtained a late diagnosis (too late for him, tragically - he probably never did get any guidance / support), some uninformed people seem to assume that his diagnosis was a convenient way to get out of being extradicted. A deep "insult to his injury".)

For those who do get a diagnosis, it is a huge relief, a reason why, a lifting of self-blame, a revelation that they are not "horrible people" or physically "horrible" to look at, (a common thought to explain constant rejection/lack of friends), a feeling that one is no longer all alone / completely different - that there are others with very similar perceptions, sensory issues, learning style, feelings, experiences, reactions, etc.etc.

So, please, where can they go for a diagnosis in Essex? Please can you clarify the route to diagnosis?

If there really is nowhere, then this needs to be sorted as soon as possible, as a matter of urgency to redress this wrong - the neglect of this group of vulnerable people.

A recent example of where a diagnosis of Asperger Syndrome is
absolutely necessary:-

Currently, if someone with Asperger Syndrome (who wants to work but lacks the social skills etc etc to be able to cope with interviews and with staying in a job), wishes to be referred via the Disability Employment Adviser at the Job Centre to the Area Work Psychologist to get a referral to the National Autistic Society’s PROSPECTS Scheme (an “into work” training scheme) they need to have a definite diagnosis, and in the example I am giving here, the
diagnosis was required to be specifically from a Clinical
Psychologist. Also may I add , that even with a diagnosis, this process is taking MONTHS, (3 so far), even before the person can get on to the Prospects waiting list itself.

STOP PRESS: I have just heard from a very reliable source,
(confirmed by the experiences of ASD charities and parents in Essex) that Essex PCTS view children and adults with ASDs as a NON-PRIORITY. Who decided this, on what evidence?

Please could you clarify? It would certainly explain the complete lack of any diagnostic or support services, the chaotic, weedy, pathetic referral "system" that leads nowhere, (and exists only in some parts of Essex, and only up to a certain cut off age), and the utterly TRAGIC situation across Essex for those with ASDs and their
parents / carers.
I can give PLENTY of examples of how these individuals lives are adversely and chronically affected, if asked, as can autism charities in Essex.

The criteria for services are rigid, and totally inappropriate for those with autism, and appear to be deliberately designed to exclude those with autism.

ASDs are not in themselves mental health problems, but if
undiagnosed, unsupported, plus the pressure of coping in a rigid mainstream world ("Inclusion" is the biggest PC con going) leads to mental breakdown, and suicidal thoughts (sometimes actions.)
Children with ASDs forced to be educated in mainstream schools manifest their sensory overload, information overload, distress at lack of friends and teasing, and profound distress in regular alarming panic attacks - for which parents have often been blamed (lax parenting / discipline etc).

I for one am sick to my stomach of hearing the anguished stories of tragic adults (some suicidal) with Aspergers, and seeing parents of children with ASDs (autism spectrum) living at the very edge 24/7, always close to tears, and with haunted dead eyes. The pressures on such parents are IMMENSE. They have to cope with their children's
difficulties, fight for absolutely everything, fill in endless forms, attend endless pseudo-consultations, attend insincere meetings with officials where they are not listened to, and forgotten about till the next meeting, fill out endless questionnaires for studies that go absolutely nowhere, make endless fruitless phone calls, plus they live in fear of the little support they might actually win being taken away and the prospect of having
to go to appeal, tribunal etc, which seem to be used these days as just another part of the overall process.
They have to send their children off to school EVERY DAY where they know their child is UTTERLY MISERABLE. Is that an "education"?

We watch cute TV programmes designed for children, read fluffy childrens books with our kids, we hear central government and LEA and Health Authority promises and charters and gold standards, and read "Essex Works", etc. and read slogans saying "world class commissioning" or whatever, we read "Passionate Responsive Inspirational Supportive Motivating" at the bottom of emails from
the CC, and then have to send our undiagnosed unsupported children off to daily HELL in school. That's if we can get school or college transport. That's another story.

What a complete BETRAYAL of our vulnerable children.

There is so much more to say ..... but no one listens to us.

Thank you very much,

Yours faithfully,

[P. Smith].

(Yet Brentwood High Street has just been totally (and
unnecessarily) refurbished, at the cost of millions.)

Dear Whitbread Kathleen (5PY) South West Essex, and Tim Huggett,

Thank you for your acknowledgement. A large number of people with Asperger Syndrome / ASDs / HF Autism in Essex, and parents of children with Aspergers / HF autism / ASDs in Essex are waiting for a full response.

Yours sincerely,

[P. Smith]

Dear Whitbread Kathleen (5PY) South West essex,

Thank you very much for the information.

I will now have a look through it, and pass it on to interested parties.

Yours sincerely,

[P. Smith].

Dear Kathleen Whitbread, NHS South West Essex,

Thank you for the information.

If I have read it correctly:-

The gaps in services that the Bid exposes are shocking.

What happened to the Autism Bid 2007. Was it fully implemented and funded? If not, when?

Or perhaps rather:

How many of the proposals were actually fulfilled, and to what extent?

What is the current situation? How does a child now get referred for diagnosis, and to whom?

What about ADULT diagnosis in the South West Essex area?

Does this evidence from one PCT reflect more or less the situation ALL across Essex?

Thank you very much,

Yours sincerely,

[P. Smith]

Dear Kathleen,

Thank you very much for your response, which I will read properly and possibly respond to.

(Re: "I would draw your attention to the Re-use of Public Sector Information Regulations 2005, which sets out rules for allowing individuals, including companies, the right to re-use public sector information for commercial or non-commercial purposes."
I wonder why this was said? I do send people a copy of the link to the WhatDoTheyKnow website, (where the information is viewable by any member of the public with Internet access) and I have copied and pasted the docs from SW Essex PCT in emails where I know people cannot follow the links. I trust that this doesn't violate any regulations. My intentions are of the very best, I can assure you - to bring attention to the dire state of affairs across Essex re people of all ages with Asperger / HF autism.)

It does sound as if SW Essex PCT is doing more than most, and was at least admirably and refreshingly honest and informed in detailing the many holes in the service in the autism bid 2007.
I am still not too sure what adults with autism are supposed to do re obtaining a diagnosis in this PCT area.
(Who exactly would I contact for this information?)
Part of the problem for people is; who is responsible for what? Is there an NHS services directory for ESSEX that would include information re diagnostic routes for adults with Aspergers in Essex?

Hoping that all the holes outlines in the Autism Bid 2007 are plugged, now and into the future,

Yours sincerely,

[P. Smith]

Dear South West Essex Primary Care Trust (PCT),

Please pass this on to the person who conducts Freedom of Information reviews.

I am writing to request an internal review of South West Essex Primary Care Trust (PCT)'s handling of my FOI request 'Diagnosis of Children and Adults with ASDs - particularly Asperger syndrome / HF autism'.

I am grateful for the information sent, particularly the very enlightening Autism Bid, but would like to know more about what actually happened, and how far this was fulfilled.

I need more detail regarding the diagnostic services provided for children, (the information needs to be "out there", clear and transparent for parents.

Please could you provide me with any information leaflets you provide for parents / carers re diagnosis - where to go for an initial referral, and what happens etc etc.

I have received no information about adult diagnosis - pathways to this, (unless I missed it?) and what the procedure would be.
Do you have any patient leaflets regarding adult diagnosis?

A full history of my FOI request and all correspondence is available on the Internet at this address:
http://www.whatdotheyknow.com/request/di...

Yours faithfully,

[P. Smith]

Dear Freedom of Information (5PY) South West Essex,

Thank you,

Yours sincerely,

[P. Smith]

Dear Whitbread Kathleen (5PY) South West essex,

Many thanks, I will read them all as soon as I can. Meanwhile, I hope it is OK with you and the PCT if I copy the link to this page to parents and to other possibly interested parties such as Essex CC Education, Social Servicea and other PCTs?

Many thanks again,

Yours sincerely,

[P. Smith]

Dear Whitbread Kathleen (5PY) South West Essex,

Thank you for all the very useful and interesting items which you have kindly sent me.

Unfortunately no matter how many ways I tried I could not open the Autism Service Information leaflet :o(
Please could you send it in a different format if possible?

Also, still - what about ADULTS with Asperger Syndrome how do they get a diagnosis and support in your PCT area?

Thank you again,

Yours sincerely,

[P. Smith]