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Adults with Autism

Volume 476: debated on Tuesday 20 May 2008

I beg to move,

That leave be given to bring in a Bill to impose duties upon the Secretary of State and certain organisations involved in health and social care in respect of support for people aged 18 and over with autism; and for connected purposes.

I declare an unremunerated interest as a vice-president of the National Autistic Society.

Autism is a lifelong condition, yet from the lack of support available to adults with autism and the lack of knowledge of their needs, people could be forgiven for believing that that is not the case. I am using the term “autism” now and in the Bill to refer to all adults on the autism spectrum, including those with Asperger’s syndrome and high-functioning autism.

At this point, however, I should like to deviate from what I intended to say to welcome strongly the Government’s announcement on 8 May in which they set out a number of actions in relation to adults with autism. Those actions include increasing the Department of Health’s capacity to work on the issue by employing a full-time autism specialist and by having one of the Department’s officials working specifically on autism, as well as undertaking research into the number of adults with autism. I believe that that is a real step forward and that those measures have the potential to make a real difference to the lives of people living with autism.

I am introducing the Bill, though, as there is still an imbalance between the increasing recognition of the need to provide support to people with autism and the action taken to meet that need. That discrepancy is highlighted in the recent National Autistic Society’s report “I Exist”, which details the experiences of adults with autism and the action taken by local authorities and primary care trusts in relation to autism. The report reveals that almost two thirds of adults with autism do not have enough support to meet their needs and that more than nine in 10 parents are worried about their adult son’s or daughter’s future when they are no longer able to support them.

I will come back to more of the findings of that report as I discuss the clauses of the Bill, but first I should like to read out a quote from the mother of an adult with autism, which I found particularly moving. She said:

“My daughter has quite calmly said that when we die, she plans to kill herself because she knows she will be completely alone and unable to care for herself. She weeps on a daily basis because she is so scared of the future. There is nobody to help her manage her daily life, and more importantly, who will love her when we’re gone?”

I believe that the duties in the Bill would be instrumental in transforming the experiences of such adults and enabling them to achieve fulfilled and independent lives.

I should like to make it clear that, when I refer to independent living, I am using the definition that the Disability Rights Commission used:

“all disabled people having the same choice, control and freedom as any other citizen—at home, at work and as members of the community. This does not necessarily mean disabled people doing everything for themselves, but it does mean that any practical assistance people need should be based on their own choices and aspirations”.

So what change is required? Well, we still do not know how many adults there are with autism in the UK, and that lack of information has a negative impact on the planning of services. More than three quarters of primary care trusts do not keep a record of how many adults with autism there are in their areas and 86 per cent. of local authorities say that if they had more information about the number of adults with autism in their areas, it would help them with their long-term planning.

The Government now intend to support a study of the number of adults with autism. That is why I am not calling for that today, but it is important that action for adults does not wait for that study to report and that that research is reinforced by action locally. Therefore, the Bill would also require local authorities and NHS bodies to identify people with autism in their areas and maintain a register of the numbers, which should also include carers.

In addition, the Bill proposes placing additional duties on local authorities and NHS bodies, because despite recent Government guidance to tackle the inaction by local services, it is apparent that not nearly enough is being done to support people.

There is a lack of clear responsibility for autism at a local level, and that needs to be addressed. First, there is currently no responsibility for autism at a senior level. The director of adult social services guidance published by the Department of Health in 2006 attempted to tackle that in part by stating:

“Local authorities shall ensure that the DASS draws up clear lines of responsibility, within his or her staff team for managing the needs of all adult client groups,”

with autism defined as one of those client groups, yet only 39 per cent. of local authorities say that the requirement has been met. A duty on local authorities and NHS bodies to appoint a senior-level person or team with responsibility for autism is essential if the situation is to improve.

Secondly—this is closely linked to the previous point—in the majority of local authorities there is uncertainty about which team provides support for people with autism. As autism is a developmental disorder, not a learning disability or a mental health problem, many adults with autism, particularly those with Asperger’s syndrome or high-functioning autism, are passed over by both teams, receiving no proper help from either. More than 60 per cent. of adults with Asperger’s syndrome or high-functioning autism say that they have experienced problems when trying to receive support from their local authority or health services. Of those, 52 per cent. were told that they did not fit easily into mental health or learning disability services.

That is perhaps unsurprising, given that nearly half of local authorities say that they do not have a process in place to manage how people with autism who do not fulfil the learning disability or mental health criteria receive support. As one local authority said,

“service silos means ASD doesn't fit. ASD falls between service areas”.

The structural disadvantage that adults with autism frequently experience is a major factor in poor outcomes, and many adults’ problems go unaddressed. The Bill therefore requires local authorities and NHS bodies to establish and publish a route by which all persons with an autism spectrum disorder may access assessments and any resulting care.

Thirdly, there is a worrying absence of references to autism in many strategic planning and commissioning documents produced by local bodies. Commissioning strategies should include the requirements of people with autism. To bring that about, it is essential that local authorities and partner NHS bodies have regard to the requirements of people with autism in their area when undertaking joint strategic needs assessments. Many areas are still to publish their joint strategic needs assessments, but it is clear from those that have done so that many assessments do not cover adults with autism. That is not acceptable.

Fourthly, the Bill would require local authorities and NHS bodies to secure sufficient training about autism for staff who are in regular contact with people on the autistic spectrum, and those involved in assessment. It is of great concern that more than 70 per cent. of local authorities do not believe that care managers receive sufficient training about autism either in their initial professional training or as part of their ongoing professional development. That is perhaps unsurprising, given that more than three quarters of local authorities do not have an autism training strategy at all.

Some 98 per cent. of local authorities and 100 per cent. of primary care trusts say that the Government could provide them with more guidance and assistance to support adults with autism, so there is near-universal demand for more support. From that it can be concluded that there is a recognition that existing work and initiatives have not gone far enough. The Bill therefore calls on the Secretary of State to ensure that there is regional support to assist local authorities and NHS bodies in taking forward good autism practice. The Bill intends to address the inactivity in relation to autism, particularly locally. It is time to recognise that it is unacceptable for adults with autism to continue to be socially excluded. We know what change is required; we now need action from local services to make that change happen.

Question put and agreed to.

Bill ordered to be brought in by Angela Browning, John Barrett, Roger Berry, Mr. Tom Clarke, Mr. Geoffrey Cox, Michael Fabricant, Mrs. Janet Dean, Mr. Frank Field, Mr. Bernard Jenkin, Anne Main and Mr. Andrew Turner.

Adults with Autism

Angela Browning accordingly presented a Bill to impose duties upon the Secretary of State and certain organisations involved in health and social care in respect of support for people aged 18 and over with autism; and for connected purposes: And the same was read the First time; and ordered to be read a Second time on Friday 17 October, and to be printed [Bill 111].