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

Dear North Essex Partnership NHS Foundation Trust,

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 NHS 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 diagnosisng - 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. schitzophrenia) - 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 presenatation",
"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.

(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.

Thank you very much,

Yours faithfully,

Pat Smith.

Dear North Essex Partnership NHS Foundation Trust,

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.

Yours faithfully,

Pat Smith

Dear Dermot, (Dermot McCarthy Dermot (RRD) North Essex Partnership
NHS Foundation Trust),

Thank you very much for your response, which I shall read and
comment on properly in due course.

At first glance:

- the diagnostic provision for both adults and children looks
rather patchy, unclear and uncertain.

- Why doen't the Trust provide a diagnostic service at CAMHS?

I would like to know, if an adult with suspected Aspergers, or the
parent of a child with suspected Aspergers asks me where and how
they get a diagnosis in NE Essex, what do I tell them?
Where do they start, GP referral? - and what is the route?

When I have asked other Asperger / HF autism / ASD support
organisations in the Essex area, and a national autism support
organisation, they do not know where to advise people to go in
order to obtain a diagnosis either.

Thank you,

Kind regards,

Yours sincerely,

Pat Smith

Dear Dermot McCarthy RRD) North Essex Partnership NHS Foundation
Trust,

Re: "It should also be remembered that
Aspergers in itself is a descriptive label only."

Who says? What exactly do (you?) mean? Why are you saying that?

I am responding below on this one point, but please, if I have
misunderstood your stance re diagnosis, put me right.

This could be seen as a subjective view on one side of the
"labelling debate", which has gone on for some time, and it would
appear to have been uttered here to undermine the whole basis of my
request.

I believe that those who oppose the diagnosis of autism and seek to
call it "labelling" , are merely trying to save money.

For what other condition would this be said, cancer? diabetes?
asthma? which? (and once that is clarified), for what other reason?
(Saving money.)

It is usually said by people who do not understand the effects of
autism on the individual and the family, and on their life chances
etc etc. What is your experience of autism?

You can look up debates re: labelling and find the various opposing
THEORETICAL points on the subject. However, YOU do not have to live
with the unsupported, undiagnosed, undescribed and therefore wholly
misunderstood effects of autism on someone on a 24/7 basis, or you
would not surely make such a throw-away dismissive point.

I have had 24 years of (family) experience with Asperger Syndrome
and I run a support group. I know first hand that diagnosis is
desperately needed, by children and adults alike, and yet the PCTs
and Essex CC continue to drag their feet, and patronise and dismiss
parents, and therfore continue to damage autistic adults and
children.

Why deny, or obscure the route to, diagnosis re: THIS particular
condition? Because it is hidden and therefore deniable? Because
those with it are at utter disadvantage - it is a social and
communication disability, and it is so hard for them to live their
daily lives, let alone fight their cause.
They have to SURVIVE their lives by AVOIDING life.
Quality of live is often bare minimum, often tragic.

Society creates structures, and we (Joe Public) are obliged to fit
into them, or else ... e.g.: mainstream school, work environments /
colleges and university environments. If parents do not send their
child to school, they can be threatened (I was, with a criminal
record and £2,500 fine, because my child was refusing school.
Mainstream school causes mental health problems in our autistic
children, and sets them up for future mental health problems, they
never forget their terrible mainstream school days, yet we
(parents) are threatened, blamed, etc. while diagnosis is witheld
or delayed for as long as possible. Yet alternative schools /
structures are not on offer. When I got a diagnosis for my child,
the threat was withdrawn.
Workplaces do not understand autism. They do not understand carers,
let alone those with hidden disabilities. If people do not work
because they can't cope, they are blamed as work-shy or inadequate,
and if on benefits seen as scroungers.
Far better to have a label of Asperger Syndrome than these terms of
abuse. If misunderstood by the criminal justice system they become
"criminals".

In school children can be called: "saddo", "loner", "geek",
"special needs weirdo", etc etc .....

Which label would you rather have?

Diagnosis is still very hard to get. “Experts” resist / delay
diagnosing, using the “PC”
excuse of not “labelling” children, to duck having to give
appropriate support and to save money.

Parents are made to feel guilty (like in your response) for even
wanting a diagnosis - we are told we are guilty of wanting to
"label" our children. Diagnosis is brushed aside as unimportant.

IT IS ESSENTIAL FOR SOMEONE WITH AUTISM TO GET A TIMELY PROPER
DIAGNOSIS

Just to start with:

• Diagnosis is not a negative label but a positive key, signpost or
handle.
• It is vital for For self-knowledge. ("Why do the same things keep
happening to me, am I just FATED to fail at relationships, in
school , in jobs", etc etc)Think of the alternative explanations
you might come up with if you had autism and were undiagnosed, and
the same awful things kept happening to you, and you didn't have
the knowledge or means to tackle the problem.
• For attempting to get help and support.
• To be able to access support groups with confidence and meet
other parents.
• Allows discussion around a hidden disability in common terms and
language.
• Allows more accurate and informed monitoring of progress.
• Can understand and deal with difficulties in a more precise and
analytical manner. Prevents the whole list of misunderstandings
around autism that the individual has to live with.
• Checks for other conditions.
• Prevents misdiagnosis e.g.: schizophrenia. Aspies can be
misdiagnosed and given drugs for this. (I know of someone
personally.)
• Aspergers is NOT a mental illness in itself, but if unsupported,
undiagnosed, it can lead to mental crises.
• Police need to be aware that a person has Aspergers. Aspies can
get into misundertandings with people, so come into contact with
police because of this. Essex Police have an Asperger Aware card.
• If a child is undiagnosed, the parent cannot claim DLA with
confidence, or get disabled person’s railcard or freedom pass etc.
Financial disadvantage.
• AS is invisible, hidden, subtle, unfamiliar to most people. Hard
to find the language to describe it.
• As needs expert support.
• Diagnosis being immense relief to most people with it. "I though
I was horrible” (in personality & looks). “I thought I was the only
one”, “I thought it was all my fault” … etc. Diagnosis explains why
past situations have happened and takes away the notion of fault or
failure.
• Can seek out others to meet up with and discuss common issues.
• AS can and often does lead to tragedy – suicide, family
breakdown, etc. Diagnosis may bring the understanding and even
support if lucky to prevent this.

A young man said recently: "I don't know WHAT I am".

You say you are working with SAFE - ASAP?

Have you read Carolann Jackson's LINKS paper? * Please see below).

What did Care Equation find out?
Please could you attrach their report here, so we can all read it?
What is happening to their report?

I will be in touch again,

Kind regards,

Thank you again,

Yours sincerely,

Pat Smith.

Carolann Jackson's LINKS paper is below.

ADULTS WITH ASPERGER SYNDROME LINKS DISCUSSION PAPER

BACKGROUND

I am Chair of the charity SAFE (Supporting Asperger Families in
Essex), and run the support group ASAP (Asperger Syndrome Adults
and Parents) - a branch of SAFE - for adults and their
families/carers. Currently ASAP has a membership of just under 200
adults with the condition between the ages of 18 and 55, and if you
add in their families, (since Asperger Syndrome affects everybody
within the family circle) we have a total of nearly 1,000 ASAP
members across all Essex, including the unitaries of Southend and
Thurrock. At SAFE/ASAP we are all unpaid volunteers, working in our
spare time and ASAP gets no specific funding, except when we can
raise money to run specialist Asperger courses for our adults.

As far as Asperger (AS) numbers are concerned, this is only the tip
of the iceberg. (See statistics at the end of this Report). Many
sufferers may be unaware they have the condition and may be living
depressed, solitary and anxious lives, knowing something is wrong,
but not what. From anecdotal evidence, many are, or have been
previously, misdiagnosed with schizophrenia, bi-polar disorder,
social phobia, psychosis, severe depression or anxiety, OCD etc.
Others know they have AS but are unable to get a diagnosis because
it is not available on the NHS in Essex. Obviously ASAP only knows
those individuals who make contact with us. The National Autistic
Society indicates prevalence of nearly 5,000 adults with Asperger
Syndrome in all Essex.

WHAT IS ASPERGER SYNDROME?

AS is a condition at the intellectually higher-functioning end of
the autistic spectrum. In other words, people with AS have average
to well-above-average IQ’s. Most suffer from mild to severe
impairments in social functioning – communication, interaction and
relationships; as well as cognitive and executive functioning
deficits and often debilitating sensory impairments. Most are
socially naive, vulnerable adults who are on average four to five
years behind their peers socially and emotionally. They are
frequently victimised, (vulnerable adults), while others can
present with extreme aggression, sometimes leading to CJ
involvement. All want a ‘normal’ life and all the things
neurotypical (‘normal’) people take for granted: relationships,
friendships, a job, independent living and so on.

But because of these impairments, a ‘normal’ life is not possible
for the majority: only 12% within our ASAP group have ever worked;
only 6% have had any form of relationship; and only 15% live
independently. Despite high IQ’s, most are almost completely
dependent on often aging and ailing parents for daily practical,
financial and emotional support, without which they would founder.
Parents have to pick up the pieces with no support.

Existing AS diagnostic criteria specifically EXCLUDES learning
disability and mental health difficulties, although a small
percentage (about 10% within ASAP) do have an accompanying mild to
moderate LD. Most individuals with AS have average to well-above
average IQ’s. 86% of our current adult membership state that they
have experienced some form of debilitating mental ill health in the
last five years, such as severe depression and anxiety, OCD,
self-harm, eating disorders, drug and alcohol dependence, phobias
etc. but have rarely received appropriate treatment. Such treatment
concentrates on the presentation of difficulties, not on their
cause – which is autism . It is left to the parents/carers to deal
with, unsupported.

CURRENT SERVICE DELIVERY MECHANISM

There is NO service delivery and there are NO service providers in
Essex because adults with AS fall through the gap between learning
disabilities and mental health and are therefore ineligible to
access statutory or other support. There is currently no
appropriate category for people with AS within the Essex system,
despite the fact that their SOCIAL learning disabilities are
profound and their daily living and independence skills are often
well below the 69 IQ cut-off. To use an IQ of 69 or above as a
marker for life-competence or social and emotional intelligence is
a very inept and possibly discriminatory method of deciding who
needs support and who does not. It is obvious in the case of people
with AS, that being intellectually-able does not guarantee an
ability to work, live independently, form relationships, or have a
meaningful life. HIGH IQ’S ARE IRRELEVANT and should not be used to
judge life-skills.

The only provider of practical and emotional support available to
adults with AS and their families in all Essex is our group ASAP.
Families and concerned friends do what they can. There are no
private service providers that I am aware of. The only Asperger
sufferers who receive statutory or other support are either those
with an accompanying intellectual learning disability, or those who
have ‘substantial’ or ‘critical’ mental health problems, often
brought about by lack of timely, expert interventions. Anecdotal
reports from parents state that if their adult child is ‘lucky’
enough (or ill enough) to be recognised as having support needs,
that support is mostly inappropriate, ineffectual and occasionally
harmful, due to lack of Asperger-trained staff. Had appropriately
trained support been available when needed and asked for, many of
these problems may not have arisen.

CURRENT SERVICE PROVISION

This is non-existent due to ineligibility of adult Aspergers, and
lack of Asperger expertise as detailed above, unless the Asperger
sufferer has an accompanying learning disability or mental health
problem at ’substantial’ or ‘critical’ level. Even then, service
provision for this group has no autism focus, is inappropriate, and
thus mostly ineffectual and often harmful.

CURRENT PROBLEMS/GAPS IN SERVICE PROVISION/UNMET NEEDS

Because able-AS is not recognised as a disability which qualifies
for statutory or other support, the problems our Asperger community
experience affect all areas of their lives because they and their
families/carers cannot access appropriately trained support. From
information taken from my ASAP group, this lack of support has
resulted in:

• high levels of family breakdown;

• very high incidence of medication (SSRI’s for instance) for
sufferers and their parents/carers – 35% of our group are on this
or similar forms of medication;

• mental health difficulties for whole family groups;

• parents having to give up their jobs to look after their adult
children;

• isolation, loneliness, friendlessness, low self-esteem, despair
experienced by sufferers (and their parents);

• inability to find and keep paid employment;

• dependence by sufferers, (even into their 40’s and 50’s) on
parents/carers for daily practical, financial and emotional living;

• inability to live independent lives because of autistic
impairments;

• great distress experienced by sufferers about the lack of
relationships or any form of social life – few have friends or
sexual relationships, and yet they all want these like any
neurotypical person.

• Their tragedy is that they KNOW there is no ‘cure’ and they will
always be ‘different’ and this can lead to a spiral of depression,
self-harm and suicide ideation.

• Parents have to dedicate their lives to their autistic adult
children, with no hope of any of them ever living a ‘normal’ life.
These pressures can be unbearable, especially when nobody is
listening to parents’ fears for their children’s futures without
them, and no appropriate support is offered.

Evidence from the National Autistic Society, the Institute of
Psychiatry and other learned institutions shows that the more
intellectually-able the Asperger individual is, the more likely
they are to suffer from mental ill health. I realise that LINKs
cannot address many of the issues below, but GAPS IN SERVICE
PROVISION include:

1. RECOGNITION of AS as a genuine DISABILITY which requires
specialist support, and the need for a unique dedicated category or
‘strand’ within the current system, which is neither learning
disability, nor mental health.

2. Each adult with AS who needs it, to have access to a named KEY
WORKER/CARE COORDINATOR or similar, and regular CARE PLAN REVIEWS.

3. Appropriate autism/Asperger TRAINING FOR ALL STAFF within
statutory and other agencies, (health, social care, mental health
etc.) so professionals understand what they are dealing with and
thus put appropriate/expert services in place.

4. Access to an expert local NHS ASPERGER DIAGNOSTIC SERVICE for
adults who believe they have the condition. Currently there is no
NHS service in Essex for able-Aspergers, and only a limited service
for those with an accompanying learning disability. Why should
able-Aspies have to pay up to £2,000 for private diagnosis when an
LD service is free?

5. Appropriate FOLLOW-UP SERVICES after diagnosis. (Again a
limited, untrained, and mostly inappropriate service is available,
but only for those with an accompanying learning disability.)

6. Access to autism/AS-trained NHS professionals in
PSYCHOTHERAPUTIC INTERVENTIONS, like CBT, which is acknowledged by
the National Autistic Society as being the most suitable form of
therapy for people with AS, and is recommended by NICE. (Again,
some NHS ‘therapy’ is available, which is not autism-focussed, but
only for those with a learning disability. There is nothing for
able-Aspergers, except in the very expensive private sector in
London and elsewhere.)

7. Some form of provision for adults with AS to be CARED FOR WHEN
PARENTS DIE since many live at home until their parents’ death,
have no independent living skills, or a friendship circle to help
with their depression following the death of loved ones. (This came
top of the list of parents’ greatest concerns.) Many end up
mentally ill, living on the streets.

8. COMMUNITY CARE ASSESSMENTS which are based on SOCIAL
functioning, rather than physical or learning disability, and
appropriate services put in place, such as specialist AS Day Care
Centres, training programmes (see No. 13), respite which allows the
person with AS to stay in their homes with trained support, while
the parents have a break away.

9. CARERS ASSESSMENTS which reflect the difficulties parents are
having with their adult children. Parents say if their adult
children’s needs were met, they wouldn’t need a Carers Assessment.

10. Access to some form of AS-trained SUPPORTED EMPLOYMENT along
the lines of the National Autistic Society’s ‘Prospects’ Supported
Employment Scheme, which provides daily or weekly workplace support
for at least six months.

11. Access to SUPPORTED HOUSING with daily or weekly help from
trained care staff. (This is available for those with an
accompanying learning disability like the ‘Harlow Project,’ but not
for able-Aspergers who are not eligible due to high IQ.)

12. Positive SOCIAL INCLUSION PROGRAMMES, through Befriending
Schemes, specialist Social Clubs or similar. These facilities are
currently available to people with LD but not able-Aspergers
because these services are inappropriate.

13. A range of Asperger-specific TRAINING COURSES for adults with
AS, delivered by trained facilitators, covering issues like social
skills, anger management, independent living, money management and
budgeting, sexuality and relationships, employment, confidence and
assertiveness etc. At the moment, ASAP is trying to provide these
essential services, but we have difficulty raising the money and
finding appropriately trained facilitators/trainers. They don’t
exist in Essex.

RECOMMENDATIONS/ACTION POINTS

ASAP recommends all of the above points, but numbers 1 – 6 are our
most urgent unmet needs.

FINAL NOTE:

Not all adults with AS will need these services - some are managing
reasonably well with considerable daily support from family and
friends - but with the incidence of Asperger Syndrome (whether
diagnosed or not) increasing dramatically, there is no doubt that
our concerns should be addressed before a real crisis occurs. This
able-autistic community will not decrease or go away. By planning
now and ensuring that appropriate autism/Asperger-trained services
are made available, many of the costs associated with ‘critical’
situations could be prevented and the emotional distress
experienced by people with AS and their families greatly reduced.
Our Asperger population is getting older and their problems
actually INCREASE with age. And remember, there is growing number
of Asperger children in Essex waiting in the wings who will also
become adults with AS and who, without support, will also
experience similar difficulties and will start to demand services.

Carolann Jackson
Chair, SAFE and ASAP

ADULTS WITH ASPERGER SYNDROME ACROSS ALL ESSEX
KNOWN TO SAFE/ASAP 1998 - 2008
District Council Area Female Male Total TABBS*
Basildon 8 19 27 13
Braintree 16 41 57 14
Brentwood 8 10 18 4
Castle Point 10 16 26 1
Chelmsford 13 31 44 15
Colchester 36 84 120 24
Epping Forest 7 15 22 3
Harlow 6 10 16 5
Havering 6 13 19 -
Maldon 7 14 21 2
Rochford 7 16 23 2
Southend on Sea 18 49 67 2
Tendring 16 35 51 7
Thurrocj 8 13 21 -
Uttlesford 9 18 27 2

TOTALS IN ALL ESSEX 175 384 559 94*

Higher SAFE/ASAP numbers in Colchester, Southend and Chelmsford
reflect the fact that these are areas where we had or currently
have active support groups and have concentrated our efforts
attracting members, and informing local agencies.

* TABBS STATISTICS of adults with a learning disability and a
diagnosis of Asperger Syndrome are taken from the Essex Learning
Disability Register at October 2008. It is unlikely that these
figures contain any SAFE/ASAP adults.

NATIONAL AUTISTIC SOCIETY ESTIMATED PREVALENCE FIGURE FOR ADULTS
WITH ASPERGER SYNDROME IN ALL ESSEX (INCLUDING UNITARY SOUTHEND AND
THURROCK): 4,680 adults.
This figure relates to 2004. In the intervening years, this figure
will have increased, due to more reliable diagnosis and greater
recognition of the condition, especially in females.

Report compiled by CAROLANN JACKSON
Chair, SAFE (Supporting Asperger Families in Essex) and
ASAP (Asperger Syndrome Adults and Parents)

October 2008

Dear Dermot McCarthy (RRD) North Essex Partnership NHS Foundation
Trust,

Please see this report from the NAS web site:

http://www.nas.org.uk/nas/jsp/polopoly.j...

" CAMHS Review: A response from the National Autistic Society

July 2008

(Edit here)

What is an autism spectrum disorder (ASD)?

Autism spectrum disorder (ASD) is a lifelong developmental
disability that affects the way a person communicates with, and
relates to, other people. It also affects how people make sense of
the world around them. It is a spectrum condition, which means
that, while all people with an ASD share three main areas of
difficulty, their condition will affect them in different ways. The
three main areas of difficulty are:

Difficulty with social interaction. This includes recognising and
understanding other peoples feelings and managing their own. Not
understanding how to interact with other people can make it hard to
form friendships.
Difficulty with social communication. This includes using and
understanding verbal and non-verbal language, such as gestures,
facial expressions and tone of voice.
Difficulty with social imagination. This includes the ability to
understand and predict other peoples intentions and behaviour and
to imagine situations outside of their own routine. This can be
accompanied by a narrow repetitive range of activities.
The term ASD covers people from across the spectrum, including
those with Asperger syndrome and High Functioning Autism. Some
people with an ASD are able to live relatively independent lives
but others may need a lifetime of specialist support. People with
an ASD often experience some form of sensory sensitivity or
under-sensitivity, for example to sounds touch, tastes, smells,
light or colours.

Over 500,000 people in the UK have an ASD. Together with their
families they make up over two million people whose lives are
touched by autism every single day.

Overview of mental health problems among children with ASD

In 2004, the Office of National Statistics (ONS) reported that 30
per cent of children with autism had another clinically
recognisable mental disorder, as compared to 10 per cent of all
children and young people. Narrowing the scope, in 2006, an
American study by Gurney, McPheeters and Davis showed that children
with autism had a significantly higher prevalence of depression and
anxiety disorders. Not only is the susceptibility higher, but
mental health problems may be more difficult to diagnose in
individuals with an ASD. As Howlin (1997) notes, because people
with autism and AS are unable "to communicate feelings of
disturbance, anxiety or distress [it] can also mean that it is
often very difficult to diagnose depressive or anxiety states,
particularly for clinicians who have little knowledge or
understanding of developmental disorder". Because children and
young people with ASD have a higher rate of mental health issues,
compounded with increased difficulty in diagnosing mental health
conditions, a greater understanding of ASD, along with training in
distinguishing between ASD, differential diagnoses, and the
presence of co-morbidities among all health professionals is
essential to better serving the needs of this population.

Findings from the National Autistic Society Survey on Child Mental
Health

In autumn 2007, the NAS conducted an online survey asking about the
experiences of children and young people with mental health
generally and also CAMHS services in particular(1). Nearly half of
all respondents said that their first experience with mental ill
health began before the age of 7. Almost three quarters said that
they had their first experience before the age of 11. The majority
of respondents reported having experienced anxiety (87 per cent)
with slightly less than half experiencing depression (45 per cent).
Of those who had experienced depression, 54 per cent also said that
they had had suicidal thoughts (or 33 per cent of all respondents).

Our findings showed that most respondents felt a lack of
understanding about their autism from non-mental health
professionals such as GPs, school employees, and social workers (83
per cent), a lack of support for their autism (77 per cent), a lack
of friends and social support (65 per cent), and a lack of
appropriate mental health services (54 per cent) affected their
mental health. Those who noted having suffered from depression and
suicidal thoughts were much more likely to report that they
experienced a lack of understanding from mental health
professionals, lack of appropriate mental health services,
bullying, and lack of friends and social support. These findings
are consistent with anecdotal evidence, which has often indicated a
link between a lack of services for and understanding of autism
exacerbating poor mental health.

Interestingly, both the type of mental ill health experienced and
what affected their mental health varied across diagnoses. People
who identified themselves as having High Functioning Autism (HFA)
or Asperger Syndrome (AS) were almost twice as likely to report
experiencing depression as someone with autism with an accompanying
learning disability (LD), and two thirds as likely as those with
autism. In addition, those who reported having HFA or AS also
experienced a lack of understanding of autism from mental health
professionals at a higher rate than others. Bullying and lack of
friends and social supports was also cited more often from this
group as affecting their mental health.

In terms of service use, nearly three-quarters of those surveyed
had had contact with or experience using mental health services.
One in ten children and young people surveyed had accessed the most
intensive services, such as specialist inpatient mental health
services or an equivalent level of services (roughly equivalent to
Tier IV services), much higher than the general population. Thirty
per cent received mental health support from mental health
professionals in the community or based at a GP surgery clinic or
school (Tier II), while 34 per cent received support from
non-specialists (Tier I). The majority of those accessing mental
health services (55 per cent) had received them at a mental health
or psychiatric clinic (Tier III support).

However, getting access to appropriate services proved to be
difficult as 79 per cent reported it was hard or very hard to get
the right support, with 42 per cent waiting 2 years or more to get
that service. Of the roughly 25 per cent of respondents who
reported not using mental health services, one quarter said that
they had tried but found that mental health staff did not
understand their autism, while nineteen per cent said that they
could not get a referral. Twelve per cent of respondents said that
they were on a waiting list.

While there were a few examples of positive experiences,
satisfaction with mental health services was generally low. Over 70
per cent of respondents reported being unsatisfied with the
services they had received, while 47 per cent of people noted that
the understanding and training of mental health staff in ASDs was
poor, very poor, or non-existent.

The complex relationship between ASD and mental health conditions

The link between ASD and mental health issues and can be divided
into three main categories: increased vulnerability to developing
mental health problems; behaviours associated with ASD having
similar symptoms to other conditions, and co-morbidity with
unrelated severe mental illnesses and disorders. While it is
difficult to make a clear distinction between some of these groups,
as individuals with ASD could fall into more than one category, it
is important to acknowledge the complicated relationship between
ASDs and mental health conditions. More importantly, however, we
need to recognise the vital role that greater understanding of
autism, timely diagnosis of mental health problems, and improved
access to appropriate services play in helping people with ASD.

A more vulnerable population

Children on the autism spectrum have an increased vulnerability to
developing mental health conditions because of the nature of ASD.
As autism is a developmental disorder that impairs the way that
people communicate, people with ASD may find it challenging or
impossible to express how they are feeling, particularly in times
of stress, unhappiness or fear. Similarly, difficulty with social
communication may prevent people with autism from expressing their
feelings or explaining any symptoms or health problems they may
have which could also lead to increased anxiety or depression. This
struggle to communicate may cause significant frustration, anger,
or hopelessness and potentially lead to any number of anxiety
disorders or depression. People with Asperger Syndrome and high
functioning autism may be particularly vulnerable to conditions
like depression as they can often experience social isolation
because of lack of friendships and social support which can create
feelings of extreme sadness and despair. Because of their
condition, people with ASD may be more vulnerable to bullying,
which can also exacerbate mental health problems (Reid 2006).

In a 2005 study, Konstantareas found that a lower level of social
skills was associated with a higher level of depression. Having
close friends and a greater ability to relate to others was
inversely related to level of depression. The aforementioned ONS
study findings may help to illustrate this point as it found that
71 and 73 per cent of children with an ASD had a more difficult
time making and keeping friends, respectively, as compared to 10
and 5 per cent of other children. Taken together, these findings
indicate that children with impaired social communication and
interaction skills may be more likely to become depressed. Many
children with high functioning autism have the desire to develop
friendships but face difficulties in developing relationships as a
result of their autism. Children with high functioning autism are
also more likely to report being bullied than other children on the
spectrum (NAS, 2006), and so it makes sense that those children
with HFA or AS who responded to the NAS survey on child mental
health were more likely to report experiencing depression than
those who identified as having autism or autism with LD.

Behaviour associated with autism

Some behaviour associated with autism, like sleeping difficulties,
lack of concentration, personal obsessions, rituals, and the need
for routine, can present similarly to and be misdiagnosed as mental
health disorders. As some of these behaviours resemble those of
generalised anxiety disorder and obsessive compulsive disorder
(OCD), it is important that professionals are trained in ASD in
order to identify the reason behind the behaviour, make an accurate
diagnosis, and recommend appropriate treatment when or if
necessary.

Children with ASD, like children with generalised anxiety disorder,
may have difficulty sleeping at night or lack of concentration at
school. However, the behaviours may occur for different reasons.
Lack of concentration, for example is often associated with sensory
processing difficulties in children with ASD. If a child is overly
stimulated by sounds, lights, or other objects in a classroom, he
or she may be unable to focus on what the teacher is saying.

Personal obsessions, rituals, and routines are associated with both
ASD and OCD, but are likely in each case to have different origins.
In the case of OCD, children may have frequent uncontrollable
thoughts that prompt them to perform certain rituals and routines
in an attempt to get rid of them. These thoughts are called
'obsessions' and the resulting behaviours are known as
'compulsions'. The classic example of this is repeated hand washing
because of a fear of germs (Rethink, 2006). For children with ASD,
routines, obsessions, and repetitive behaviours may serve a
different purpose, helping to provide provides structure, order and
predictability which helps individuals cope with the uncertainties
of everyday life.

As these conditions may look the same, professionals need to have a
high enough level of training and understanding of autism to be
able to "unpick" the different behaviours to identify the
underlying condition so that effective support and where
appropriate treatment can be put in place.

Unrelated mental illness

As with the general population, people with ASD may have a mental
health condition unrelated to their autism. Incidence of severe
mental illness like schizophrenia, bipolar disorder, and
personality disorders in people with autism is similar to that of
the general population. However, additional conditions are often
overlooked through what is sometimes described as "diagnostic
overshadowing". This is where a primary diagnosis means that other
conditions are left undiagnosed, possibly as a result of a lack of
understanding of autism on the part of professionals or a failure
to carry out a full assessment.

There is no evidence that people with autism are more likely to
develop a mental illness such as schizophrenia because of their ASD
(Wing, 1996). However, some individuals have been misdiagnosed with
schizophrenia for example when they actually have an ASD because
diagnosticians do not have a full understanding of the behaviours
associated with autism, such as the literal understanding or
unusual use of language, odd behaviour or strange obsessions, and
their implications for the process of diagnosis.

A lack of support and services

Non-mental health services

Providing appropriate services to people with autism is extremely
important in improving quality of life and supporting emotional
wellbeing. Many people with ASD find the world they live in a very
confusing place, and a lack of autism-specific support, such as
clear structures and routines and appropriate forms of
communication, can lead to high levels of anxiety and undermine
emotional wellbeing. In NAS research on autism and education
carried out in 2006, 34% of parents said that a delay in accessing
support at school had had a negative effect on their childs mental
health. Yet often the support that a child with an ASD needs can be
simple to implement and can benefit other children as well.

We welcome the Governments commitment to raising the levels of
understanding and training in autism in schools through initiatives
including the Inclusion Development Programme, the Autism Education
Trust and new modules for initial teacher training in special
educational needs, including autism. However, there needs to be a
much greater understanding of autism spectrum disorders across a
wide range of professionals, including GPs and social workers.
Standard 8 of the Childrens National Service Framework (NSF)
recommends that all professionals who come into contact with
children with disabilities have training in autism. This is
essential considering that more than four in ten GPs do not feel
they have sufficient information to make an informed assessment
about the likelihood of a patient having an ASD and 13 per cent do
not know how or where to refer a patient with a suspected ASD (NAS
2003). Clear referral pathways should be developed locally so that
all professionals working with a child on the autism spectrum can
refer to appropriate diagnostic and mental health services
effectively and quickly.

Mental health services

Where young peoples emotional wellbeing deteriorates to the point
of needing more specialist mental health support, appropriate
services need to be made available with access to expertise in
autism spectrum disorders. Yet in a large proportion of cases this
is not happening, causing mental health problems to deteriorate
still further. Most people surveyed said it was hard or very hard
to get the right support. People are facing delays of two years or
more in accessing services, in many cases having to reach crisis
point before anything is done. As one parent reported in the NAS
survey, "it took my son to have a mental health breakdown and be an
absolute danger to his young siblings to access CAMHS. [He was]
turned away three times in eight years [because there were] no
vacancies".

In some cases a lack of understanding of ASD leads to professionals
ignoring the ASD, so that only the non-autism aspects of an
individuals difficulties are addressed. As one respondent in the
NAS survey noted, "Autism is the root of my problems. Dealing with
the co-morbidities only makes them go away for a while until the
autism forces them back to the surface." If the underlying
difficulties relating to autism are not addressed then the mental
health problems are very likely to reoccur. In other cases there is
sometimes a refusal to treat altogether.

Often, the mental health support people are able to access is
inappropriate or ends when the crisis has passed. A number of
respondents reported being referred for inappropriate treatments
and therapies, such as drugs, or cognitive behaviour therapy for
children with communication difficulties. The Royal College of
Psychiatrists state that "Commissioners should ensure that
individuals who are thought to have autistic spectrum disorders
have access to expertise across a broad range of therapeutic
approaches, including those relevant to the psychological
management of these specific disorders, delivered through
autism-friendly treatment facilities that include the whole range
of age and ability and take into account cultural factors."

Without timely and appropriate support, mental health conditions in
an already vulnerable population could become much worse. Farrugia
and Hudson (2006) argue that anxiety and behavioural symptoms left
untreated in adolescents with Asperger syndrome might lead to
significant life interference and continue through adulthood.

Services should be appropriate to the needs of children with ASD,
with autism-friendly environments, and support in place, such as
systems for children who have difficulties in waiting for
appointments. They must be based on the principle of early
intervention, and be person-centred, responding to the needs of the
individuals as and when they need services.

Training for mental health professionals

CAMH services have a key role in diagnosis of ASD. Yet nearly half
of the survey respondents said that understanding of ASD by mental
health professionals was poor or non-existent. The lack of
understanding of ASD amongst mental health professionals means that
often diagnoses are not made or are made incorrectly. As one parent
responding to the NAS survey wrote, had I accepted the first CAMHS
diagnosis, my son would still be labelled paranoid schizophrenic
This misdiagnosis was a travesty caused by the non-existent
knowledge of Asperger [Syndrome] by a consultant.

Unfortunately, this is an all too common sentiment, and a
misdiagnosis can lead to no or inappropriate support being put in
place, further increasing the risk of developing mental health
problems. With proper knowledge of ASDs, these egregious
misdiagnoses could be reduced and lead to appropriate services and
support.

Respondents felt that a lack of understanding by various
professionals significantly affected their mental health. Those
respondents identified as having HFA or Asperger Syndrome reported
experiencing a lack of understanding of autism from mental health
professional at a higher rate than others.

We recommend a tiered approach to training.

All mental health professionals should have a basic awareness and
understanding of ASD.
There should be a named member of each CAMHS team with an in depth
understanding of ASD.
For the most complex cases, specialist expertise in ASD should be
available at a regional level, with clear pathways for referral.
In particular, there needs to be increased understanding of how to
support the mental health needs of children and young people with
AS and HFA.

In terms of diagnosis, we support the recommendation in the Royal
College of Psychiatrists' report "Psychiatric Services for
Adolescents and Adults with Asperger Syndrome and Other
Autistic-Spectrum Disorders" (2006) that: "Commissioners should
ensure that there is access to local, basic diagnostic expertise
that would allow for the firm diagnosis of autistic spectrum
disorders in clear-cut cases. They should also ensure access to a
second level of diagnostic expertise for those individuals where
there is diagnostic uncertainty."

Coordination across services

As autism is a multi-faceted developmental disability, it is
crucial that children with ASD receive holistic support. The
process of assessment and diagnosis is a crucial time when
information, services and support should be made available. As
diagnosis is often carried out by CAMH services they have a key
role in co-ordinating this information.

Additionally, the National Autism Plan for Children (NAP-C),
developed by the Royal College of Paediatrics and Child Health and
Royal College of Psychiatrists with the NAS, states that assessment
of mental health is an essential component of a complete
multi-agency assessment as a child goes through the process of
identifying, assessing and diagnosing any ASD they may have. The
All Party Parliamentary Group on Autism manifesto recommends that
by 2013, "People with autism will become automatically eligible for
preventative mental health services after diagnosis, tailored to
their needs and developed using an autism-sensitive person-centred
planning process."

The Every Child Matters agenda places a strong emphasis on bringing
services together to meet the needs of a child as a whole. Yet in
many cases agencies are not working together. As one NAS survey
respondent wrote, "my son [has become] more and more isolated
because there is no package type of service for him. Everyone just
handles their little bit. The whole thing is therefore fragmented
and falls apart when one part goes wrong. No one works together. My
son is a whole person. He needs a holistic service. His mental
health [problem] is a result of other poor services." Improved
coordination across childrens services including CAMHS is
essential. This must include better information and support to
parents, as well as better multi-agency assessment and service
provision. The NAS welcomes the current review of childrens trusts
arrangements led by the DCSF which will strengthen the duties on
childrens services to work together.

Transition to adulthood

The transition to adulthood is a particularly difficult time for
young people with ASD. Many people with ASD have difficulties
coping with change, and according to Tantam & Prestwood (1999)
people with autism and Asperger syndrome (AS) are particularly
vulnerable to mental health problems in their late adolescence and
young adulthood. In addition the move to adult services poses
significant challenges, with the social care inspectorate recently
describing the process as a nightmare. Effective support during the
transition to adulthood is critical. Again, this was highlighted in
Standard 9 of the Children's National Service Framework (NSF) in
2004, stating that "Young people aged sixteen and seventeen years
and children with both a learning disability or pervasive
developmental disorder(2) and mental health problems have not
received sufficient input from CAMHS."

Furthermore, eighty four per cent of respondents aged 15 and older
in our survey said that no one had spoken to them about support
that will be available to them once they were too old for CAMHS. It
is unacceptable that at a time where young people are likely to be
in particular need of support the vast majority of young people
have no idea whether that support will be available.

There needs to be a clear and transparent process of planning for
the transition from CAMHS services, and this needs to be in place
regardless of whether a young person will continue to access adult
mental health services or not. Where a young person does proceed to
adult services information needs to be shared effectively and adult
services need to be involved at the beginning or as early as
possible in the transition planning process.

The Royal College of Psychiatrists recommend that "It should be
recognised that those who are moving out of psychiatric services
will still require additional support whether they are moving on to
education or employment and this should also be the focus of
multi-agency planning."

Conclusion and recommendations

The difficulties children on the autism spectrum face in accessing
of mental health services were identified in both the Every Child
Matters Green Paper back in 2003 and the Disabled Children's
Standard of the Children's NSF in 2004. In 2008 families are still
reporting the same difficulties. This now needs to be prioritised
urgently to ensure that children and young people with autism
spectrum disorders finally get the support they require.

1. There needs to be much greater understanding of autism spectrum
disorders across a wide range of professionals, including GPs and
social workers to support the emotional well-being of young people
with ASD.

2. Clear referral pathways should be developed locally so that all
professionals working with a child on the autism spectrum can refer
to appropriate diagnostic and mental health services effectively
and quickly.

3. Individuals who are thought to have autistic spectrum disorders
should have access to expertise across a broad range of therapeutic
approaches, including those relevant to the psychological
management of these specific disorders, delivered through
autism-friendly treatment facilities.

4. Services should be appropriate to the needs of children with
ASD, with autism-friendly environments, and support in place, such
as systems for children who have difficulties in waiting for
appointments. They must be based on the principle of early
intervention, and be person-centred, responding to the needs of the
individuals as and when they need services.

5. Training should be undertaken on a tiered basis:
- All mental health professionals should have a basic awareness and
understanding of ASD.
- There should be a named member of each CAMHS team with an indepth
understanding of ASD.
- For the most complex cases, specialist expertise in ASD should be
available at a regional level, with clear pathways for referral.

In particular, there needs to be increased understanding of
supporting the mental health needs of children and young people
with AS and HFA.

6. Improved coordination across childrens services including CAMHS
is essential. This must include better information and support to
parents, as well as better multi-agency assessment and service
provision.

7. There needs to be a clear and transparent process of planning
for the transition from CAMHS services, and this needs to be in
place regardless of whether a young person will continue to access
adult mental health services or not. Information needs to be shared
effectively and adult services need to be involved at the beginning
or as early as possible in the transition planning process.

In their April 2006 publication "Psychiatric Services for
Adolescents and Adults with Asperger Syndrome and Other
Autistic-Spectrum Disorders", The Royal College of Psychiatrists
presented a number of key recommendations to ensure that
individuals with autism spectrum disorders receive appropriate
psychiatric services. The NAS also endorses the following
recommendations from the report, which are of particular relevance
to this review:

1. The view of individuals with autism spectrum disorders should be
incorporated routinely in service planning both individually and
collectively.

5. Commissioners should ensure that there is access to local, basic
diagnostic expertise that would allow for the firm diagnosis of
autistic spectrum disorders in clear-cut cases. They should also
ensure access to a second level of diagnostic expertise for those
individuals where there is diagnostic uncertainty.

6. Services should be well integrated so that clinical diagnosis is
not isolated from treatment and that this, in turn, is closely
linked to the (non-psychiatric) services that are provided by other
agencies.

7. Psychiatric training should include experience in the diagnosis,
assessment and management of individuals with autistic spectrum
disorders. In particular, there should be some supervised
experience with adolescents and adults of normal cognitive ability
who have these disorders (i.e. individuals with Asperger syndrome
or high functioning autism).

8. Commissioners should ensure that individuals who are thought to
have autistic spectrum disorders have access to expertise across a
broad range of therapeutic approaches, including those relevant to
the psychological management of these specific disorders, delivered
through autism-friendly treatment facilities that include the whole
range of age and ability and take into account cultural factors.

9. Referrals should be made within a formal contractual programme
(rather than on an individual basis) to ensure that the provider
(rather than any individual clinician) accepts responsibility for
the care of the individual with the disorder and there should be
regional agreement as to the roles of various individual
consultants. It should not be assumed that a service can absorb
this patient group without specific planning and investment.

For further information, please contact:

Sarah Redman
Social Policy Researcher
020 7923 5771
[email address]

Sarah Lambert
Policy and Parliamentary Officer
020 7903 3558
[email address]

July 2008

Footnotes

1. The response was sizeable with 433 surveys fully completed: 84
per cent filled in by parents or carers on behalf of a child or
young adult on the autistic spectrum, 14 per cent completed by a
child or young adult with autism, and 2 per cent identified
themselves as other. Respondents were in all nations across the UK
with the vast majority in England (83 per cent). Sixty three per
cent of the respondents identified themselves as having high
functioning autism or Asperger syndrome, 21 per cent as having
autism plus a learning disability, 16 per cent as having autism,
and 5 per cent as other.
2. Autism spectrum disorders including Asperger syndrome are the
most common pervasive developmental disorders. "

In the light of this report, for example, does the PCT still see
diagnosis as a mere label?

Diagnosis can be a moment of utter "Road to Damascus" revelation,
relief and enlightenment to some, when the scales fall from their
eyes, and old feelings of self blame , low self esteem, can drop
away or at least be explained, how can this be put down as a
"label"?

Yours sincerely,

Pat Smith

Dear Dermot McCarthy (RRD) North Essex Partnership NHS Foundation
Trust,

Here are some quotes from the Care Equation Report which you
mentioned:

"NORTH ESSEX PARTNERSHIP NHS FOUNDATION TRUST

SPECIFICATION FOR A SERVICE FOR ADULTS WITH ASPERGER SYNDROME IN
NORTH EAST ESSEX

Report by
Karin Janzon, Stella Law, Samantha Bond
Care Equation Ltd
43 Hove Park Villas Hove
BN3 6HH
Tel: 01273 245 450
Email: [email address]
Web: www.care-equation.co.uk July 2009"

" 2.5.2 Local services
The situation in Essex with regard to data about services for
people with autism, generally, and Asperger syndrome/ high
functioning autism in particular, reflects the national picture in
that there is no systematic collection of service data for these
groups.

Statutory provision
All parties acknowledge that there is no identified specialist
service for adults of working age on the autistic spectrum in
Essex. The current situation can be described as a patchwork of
very limited services commissioned in different ways, e.g spot
purchased or provided in the context of mainstream services, with
many people falling in the gap between learning disability and
mental health services and/or not meeting eligibility criteria for
social care.
As data is not collected systematically for this group, evidence of
resources tends to be anecdotal:

- Diagnosis have in some cases have been spot purchased by the NHS
North East Essex PCT from specialised services outside Essex –
including four diagnostic assessments for adults in 2007/08 and
four in 2008/09. In 2009/10 five assessments have been approved at
the Maudsley, costing £1,800 each. According to SAFE (see below)
six cases presented for funding have recently been turned down. As
a result, some people are paying for diagnosis privately.

- Only a handful of people with Asperger syndrome/ high functioning
autism problems have come through for counselling or therapy within
the secondary Mental Health services. Access to support has only
been possible on account of them having a co-morbid Mental Health
condition. There is very limited expertise in autism within the
mental health service - one clinician with some Aspergers expertise
has provided this support on an ‘informal’ (not commissioned)
basis.

Clinicians have highlighted the ‘organisational gap’ associated
with AS/ HFA and made several recommendations for the development
of a service since 2001.

- Essex County Council commission placement and support packages
for “a handful” of adults with AS/ HFA, but do not collect
statistics on referrals in such a way that it can identify
presented need of this group. The County Council is currently
considering commissioning research into the needs of people with
ASC living in Essex. Essex CC is moving away from traditional forms
of commissioning services and committed to self-directed services
and individual budgets as a way of enabling service users to shape
their own services.

- Staff within Essex Adult Social Care, including those undertaking
assessment, do not have training in communicating with people with
AS/ HFA."

and

"What support for people with AS/HFA is currently available in
North Essex?

Participants said that the only support they have received has been
from the voluntary sector; from the organisation SAFE to which they
belong. This organisation covers the whole of Essex and is based in
Chelmsford. Many of the participants come from different areas in
Essex and find transport and funding of the transport a challenge.
The participants spoke highly of this organisation but said there
is a lack of resources and funding, so support is limited due to
constraints of time and funding.

 One participant expressed the view that ‘the statutory sector has
been more harm than good’, but did not elaborate on this.

 ‘’There are no support services’’,
‘’whenever I have a crisis I have to go private as they don’t want
to know’’, ‘’there are no diagnostic services, so the doors are
closed’’, .....
‘’it is so difficult to become independent; you are dependent on
many people”.

 One parent stated that ‘’I am only able to access services for my
son from private services’’ "

Please note the paragraph:
"Clinicians have highlighted the ‘organisational gap’ associated
with AS / HFA and made several recommendations for the development
of a service since 2001."

Why has nothing been done in all this time?

Thank you,

Yours sincerely,

Pat Smith