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,
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.
Thank you for your recent request for information relating to the
diagnosis of adults and children with ASDs in Essex.
In north Essex the commissioning team holds a budget which is accessed
through the tertiary referral process which is jointly managed between
the Trust and the Lead PCT for Mental Health Commissioning ( NHS Mid
Essex). Where clinically indicated people with complex issues related to
severe mental illness and Aspergers syndrome have consequently had
access to specialist assessments at the South London and Maudsley
Hospital in London. Some services have also purchased services in the
independent sector as part of a complex care pathway.
Some parts of the country have introduced local specialist teams for
people with Aspergers syndrome and high functioning autism although this
is not by any means the norm. There has however been a piece of work
carried out in north Essex to scope the options for creating a local
multidisciplinary team. The report carried out by a company called Care
Equation is to be further discussed by health and Essex County Council
commissioners in the first quarter of 2010.
The local organisation SAFE (Supporting Aspergers Families in Essex) and
its partners organisation (Asperger Syndrome- adults and parents) are
the two organisations we work with and they have been involved in the
putting together of the report.
With regard to Child and Adolescent Mental Health Services our approach
has been that the Trust does not provide a diagnostic service in CAMHS,
this is usually provided by Paediatrics. We obviously do pick up young
people on the autistic spectrum, some come with a diagnosis and some we
diagnose as part of a comprehensive assessment for their presenting
Statistics are publically available on the Child Health Mapping
Those who would provide a diagnosis in CAMHS are Consultant
Psychiatrists and Clinical Psychologists, but this is usually part &
parcel of a wider assessment. It should also be remembered that
Aspergers in itself is a descriptive label only.
With specific regard to the request for data on outcomes of assessments
and diagnostic outcomes, given the highly dispersed nature of the
pathway and the variety of organisations involved it is not possible to
give a response to this request as the data is not centrally held. Any
snap shot from one organisation will not be meaningful.
A senior member of the Trust's management would be willing to meet you
if this would be felt to be more helpful.
North Essex Partnership NHS Foundation Trust
103 Stapleford Close, Chelmsford, Essex CM2 0PX
Tel. 01245 546429 (3134 6429)
Fax. 01245 546408 (3134 6408)
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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.
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,
Thank you again,
Carolann Jackson's LINKS paper is below.
ADULTS WITH ASPERGER SYNDROME LINKS DISCUSSION PAPER
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.
ASAP recommends all of the above points, but numbers 1 – 6 are our most urgent unmet needs.
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.
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)
Dear Dermot McCarthy (RRD) North Essex Partnership NHS Foundation Trust,
Please see this report from the NAS web site:
" CAMHS Review: A response from the National Autistic Society
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:
Social Policy Researcher
020 7923 5771
Policy and Parliamentary Officer
020 7903 3558
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"?
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
" 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.
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."
"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?
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