I am writing to you in response for your call for evidence regarding the human rights of adults with learning disabilities.

  I am the Chair of SAFE (Supporting Asperger Families in Essex), and also have responsibility for running the adult section of our family support group—ASAP (Asperger Syndrome—Adults and Parents). Our community of adults with Asperger Syndrome (AS) are being disenfranchised from virtually every statutory service available, and their human rights violated, because they are not considered eligible for either learning disability or mental health services by Essex local authorities, despite overwhelming evidence of need.

  However, the Implementation Guidance (2001) to the Valuing People White Paper clearly states (and I paraphrase) that people with AS (despite having an IQ above 70) CAN be eligible for learning disability services, subject to an "Assessment of their social functioning." Thus they are explicitly INCLUDED within the remit of . . . .Valuing People, but being EXCLUDED by Essex social care services because our members continue to be told that a learning disability' is defined as being below 70 and therefore our intellectually-able adult children (most with average to well-above average IQ's) are not eligible, despite their often severe SOCIAL learning difficulties which adversely affect every area of their daily lives. When I contacted the Department of Health about this, I was told that social care departments should NOT be using IQ as a marker for eligibility to services. But it still goes on, and our adult children are still being turned away, despite clear guidance from the Government.

  Next I turn to the Implementation Guidance's reference to an "Assessment of social functioning." In order to assess such functioning, the Assessor needs to be trained to understand autism at the high-functioning end of the spectrum so that they can ask the right questions. This Assessor should also have sufficient knowledge of the condition to take into account the Asperger adult's impairment in communication, and therefore his/her ability to fully understand what is being asked, and thus give an appropriate, reasoned response. In other words, a "standard" Social Care or Community Care assessment would be totally inappropriate: what is needed is a SPECIALIST autism/Asperger assessment. This is not, and never has been, available to our adult members, despite many lengthy communications between myself and social care professionals over the last few years, pointing out this arguably discriminatory system. In fact, only two out of the 145 adults with AS in our group have ever had a Community Care Assessment. Others who have tried have, again, been turned away because they do not fulfil eligibility criteria. Thus, our adult childrens' needs are not being assessed, let alone met. They remain invisible, unsupported and excluded.

  Even if such an Assessment existed, the specialist autistic services our adult sons and daughters need are not available in Essex. You will be aware that in order to access various statutory and other services, you need to be known to either social care, physical disabilities or mental health teams. But (as detailed above), people with AS do NOT have an intellectual learning disability, being mostly of average to well-above average intellectual ability, so they don't fit in social care. AS is NOT a mental health condition, so they don't fit there, (although sadly many end up needing critical psychiatric services BECAUSE of years of lack of support). AS is NOT a physical disability, so they don't fit there either. So where DO they fit? Apparently nowhere. Our AS community is disenfranchised and marginalised on virtually every level and certainly do not live "full and independent lives as part of their local communities."

  Even the "Fair Access to Care Services" legislation (which also mentions that services for people with AS should be available) has been quietly forgotten—the argument being that Essex does not have a STATUTORY obligation to provide such services. And so they don't.

  As a person with AS, if you are unknown to social care or mental health agencies, (and only 2% of our adult members ARE known to them) despite having a recognised medical disability (accepted by government as eligible for Disability Living Allowance, Incapacity Benefit etc), you are NOT ELIGIBLE to receive (amongst others):

—    Direct Payments—which could be used to buy in appropriate independent social care.

—    Advocacy Services. Within Essex, these are only available to those with intellectual learning disabilities or mental health problems.

—    Supported Employment. Because of their social interaction and communication problems, people with AS find it extremely hard to find and keep appropriate work. The National Autistic Society Report Ignored or Ineligible? states that only just over 12% of people with AS are in full-time employment. That means that 88% are on some form of welfare benefit, although most want to be in meaningful appropriate work and not dependent on the State. They are unable to access the many Government-sponsored Supported Employment Schemes they need because they are considered too high functioning, and thus ineligible. Their often high IQ's do NOT make them any more employable, because most have considerable social interaction problems with others in the workplace and are frequently sacked because of "inappropriate behaviour" or placement in inappropriate employment. This severe social deficit is still not being recognised by Essex as one which requires support in the workplace. People with AS need specialist guidance in workplace skills, office culture, decision-making, organisation, prioritisation and social skills. Such `guidance' is not available to our able-autistics in Essex, only to those with an academic learning disability Again, our AS children do not fit, but with specialist training they could enter the employment market, come off welfare benefits and start contributing to the State, thus saving millions in Incapacity Benefit etc payments.

—    Supported Independent Living. In our support group, 77% of adults with AS are still living at home well into their 30s and 40s, being financially and emotionally supported by often elderly and ailing parents. Despite average to well-above-average IQ levels, they lack the basic "life skills" and simple common-sense necessary for them to live independently in safety—such skills as money management, health and safety issues, house maintenance, cooking, cleaning, shopping, personal hygiene etc. In many respects, their life-skills performance ability is well below the 70 IQ marker used by social care services to define learning disability. Most (but not all) will need help with daily living, but again this essential support is not available because our autistic adult children do not fit eligibility criteria. So, feeling lonely and frightened about being left to fend for themselves, and probably failing, they choose to continue living at home in a structured and known environment, where they are safe and cared for. However, the impact on parents is profound—there is no "retirement" for them. Their children are likely to be dependent on them until the parents die. There are no courses for their adult children to attend which could help them learn basic living skills, eventually leading to the possibility of independent living. These courses ARE available to people with an academic learning disability, but NOT to our intellectually-able adult children, because again they are not eligible for this educational support. You should note that there is' absolutely NO link between high intellectual ability and performance of daily life skills.

—    Inclusion into the Community. People with AS are a socially excluded group because of their difficulties with social relationships, social interaction and communication. No attempt at all has been made to include or integrate our high-functioning autistic sons and daughters into the community. There are no social schemes, no appropriate day-centres, no specialist learning opportunities provided by Essex for adults with AS, although there are several schemes for autistic people with an intellectual learning disability. As a local charity, we do what we can, but as unpaid parent volunteers, we are hampered by lack of funds and the total lack of statutory and other support.

—    Adults (and children) with AS long to be part of the neurotypical ("normal") world, but they don't know how to do it. Unfortunately, inclusion is a two-way process: much as the person with AS wants inclusion, others have to want to INCLUDE them, which simply does not happen. Particularly in school, college and the workplace, bullying is a virtual given where others frequently set out to blatantly EXCLUDE people with AS, because they are perceived as "weird" or "strange" and "not one of the gang." The notion of "genuine inclusion" is an idealised dream for the vast majority of our adult children, who lead very restricted or non-existent social lives. Outside in the world, they can become victims and the natural prey of unscrupulous people who perceive them as vulnerable adults and take advantage of their naivety and desperation for friends. This desperation to be accepted by others can also lead people with AS into criminal activities, all for the sake of "friendship."

  I would also like to mention three other issues which are of great concern to our adult members and their families, and affect their human rights for equal treatment in society:

1.  LACK OF ASPERGER-SPECIFIC DIAGNOSTIC SERVICES IN ESSEX

  Despite extensive researches on my part (and confirmed by the National Autistic Society), there are NO qualified NHS Asperger diagnosticians in Essex. If an adult wants a diagnosis, the route is tortuous at best. Firstly, s/he will have to get a referral from their GP to a Consultant Psychiatrist, most of whom are unlikely to have had any experience of autism and will probably misdiagnose individuals with schizophrenia, bi-polar disorder, social phobia, personality disorder and so on. (This is borne out by the many letters and anecdotes I have had from parents). If the Consultant is sufficiently unsure and feels a diagnosis of AS is possible, he will then have to put the case before the PCT, who will decide if they have sufficient funds to refer the person to a specialist hospital for diagnosis (like the Maudsley, Guys, Eliot House, the Autism Research Centre in Cambridge etc). Unfortunately, six of our adult members have currently been turned down for funding and thus referral to a specialist diagnostician, so they have no opportunity to get a diagnosis. Where do they go now? It is surely discriminatory that an individual can obtain a diagnosis of, say, bi-polar disorder free on the NHS without having to put their case before the PCT, while people with AS have to go through the trauma of obtaining funding for a diagnosis of Asperger Syndrome. Diagnosis of AS vindicates the individual and their family and helps them make sense of their lives—something which every person has a right to, surely?

2.  LACK OF PSYCHOLOGICAL SERVICES IN ESSEX

  Despite the NICE recommendations for "talk therapy"—cognitive behavioural therapy etc as opposed to medication—there are no such services available on the NHS anywhere in Essex, unless the person with AS has either an academic learning disability or a "severe" or "critical" mental health problem. (Again, we don't "fit" Even then, the psychological services offered are inappropriate for able-autistic people, who need a very specialist form of treatment, as confirmed by the National Autistic Society. The percentage of people with AS who suffer from depression, anxiety, suicide ideation etc. is far higher than in the general population, mainly through lack of recognition of their condition as a genuine disability, and therefore total lack of appropriate support. This obviously has a devastating effect on the family, who have to cope, unaided, with the psychological deterioration of their adult child. In all too many cases, parents end up as depressed as their sons and daughters, leading to frequent marriage breakdowns and mental health problems in parents too. (Over 40% of our parent members are on some form of anti-depressant medication). You should also note that the more intellectually able the person with AS is, the more aware s/he is of his/her condition and the knowledge that there is no cure and it will never go away. This knowledge can also lead to mental breakdown and despair. We need therapists who have had specific Asperger training and know what they are dealing with. The financial burden on the State having to pick up the pieces of these broken lives (hospitalisation, medication etc) must be enormous. Preventing this psychological damage would save the Government millions.

3.  LACK OF ASPERGER-SPECIFIC TRAINING IN ESSEX

  Despite the good intentions of many professionals within social care and mental health, I have been told on innumerable occasions that, even if people with Asperger Syndrome WERE eligible for services, these teams have no training in how to deal with high-functioning autistic people. All they could possibly be offered was the same service they provide to people with learning disabilities, which would be totally inappropriate for our intellectually able members. It is a dreadful admission of the system's failure that I, as a mere parent and Chair of SAFE, receive many calls from professionals (including Consultants), asking ME for advice about where to place people with AS, because they have no services and no specialist expertise!

  I will now turn to your heading Call for Evidence and answer each question, insofar as it relates to adults with AS:

—    "the provision of public services... the ability of individuals to access such services... etc" This has been covered above. There are no appropriate services for adults with AS and thus no access.

—    "the possibility for adults... to form and maintain personal relationships..." Due to difficulties with social interaction and communication, many people with AS find it very hard to make and maintain relationships, and to understand the nature of friendships, reciprocity, sexually appropriate behaviour etc. What is needed is a comprehensive course of training in social and other personal skills—something not available in Essex to our intellectually-able adult children, but which IS available to those adults with an academic learning disability. Again, people with AS are discriminated against because they do not fit Essex eligibility criteria.

—    "the opportunities... to participate in the life of their local community" As above, there is no move to include our adult children into society or facilitate participation because their disability is not recognised as one which needs this essential social support. They remain mostly isolated and marginalised, and this inevitably increases the possibility of mental breakdown. However, many social opportunities exist in Essex for those with an academic learning disability, but again, our adult children are denied access because we do not fit Essex eligibility criteria.

  Unfortunately, despite the good intentions of Valuing People, and its explicit recognition of the needs of people with AS, Essex still refuses to acknowledge the condition as an eligible disability which requires trained resources. It is my belief that all autistic spectrum conditions (especially those at the higher functioning end of the spectrum where they receive little or no support) should be placed in a separate category of need—neither learning disability nor mental health. Autism is unique and it's about time the Government took this on board and made it mandatory for all statutory agencies to develop appropriate support services for our adult sons and daughters (and their families/carers) who are suffering a great injustice by being discriminated against. I believe the human rights of people with AS are being violated through lack of eligibility or recognition of their disability; lack of access to, or the provision of, appropriate services; lack of appropriate professional training; and lack of understanding of their autistic condition, leading to rejection by peers and others and consequent isolation and disfranchisement from the mainstream.

  Although this is a long letter, it is only a "snapshot" of some of the difficulties our adult children have to cope with through lack of recognition of their severe social problems.

Carolann Jackson

Chair, Safe

17 May 2007