Previous Section Back to Table of Contents Lords Hansard Home Page

Autism Cymru, the Welsh autism charity, first inspired, and then worked in partnership with, the Welsh Assembly Government and others to establish an all-age Welsh Assembly Government strategic action plan for autism, which is due to be implemented from April; that is the first of its kind by any Government in the world. In September this year, Autism Cymru, in partnership with the UK research charity Autism Speaks and Cardiff University, is setting up the Wales Autism Research Centre and a chair in autism. This initiative has been supported by the Welsh Assembly Government among others. These are just two out of several examples, which inspire great hope for the future.

The Celtic nations countries have been bold in their approach and are taking the lead in terms of a strategic outlook and practical developments for autism. The message is clear: Governments need to develop long-lasting and consistently applied strategies and policies for autism. I therefore ask the Minister to ensure that the Government expand their vision and engage with the devolved Governments and members of the Celtic Nations Autism Partnership, and start planning for the future as a matter of urgency.

7.57 pm

Baroness Bottomley of Nettlestone: My Lords, I congratulate the noble Lord on bringing forward this debate, which is on a subject of great importance.

I worked many years ago with Professor Sir Michael Rutter at the Maudsley Hospital. He is one of the earliest experts in this field. I had the opportunity to work with the National Autistic Society in my former constituency at one of its residential institutions in Godalming and, more recently, I have been professionally involved with TreeHouse. That remarkable charity, which is chaired by our colleague, the noble Lord, Lord Clement-Jones, provides education for parents and professionals and an advocacy service for people affected by autistic spectrum disorder. I was also pleased to hear the noble Baroness refer to Autism Speaks—that wonderful charity raises money for research and is led by Dame Stephanie Shirley, who is a remarkable, fearless and persistent champion of this cause. Already Autism Speaks provides as much as half of the Medical Research Council funding for autism research, which is a reflection of the inadequate recognition of this very important issue. Perhaps half a million people are affected by autism spectrum disorder—one in 110 children—and are in a situation that needs some form of attention.

I commend to the House the recent report by TreeHouse suggesting that the aggregate annual cost of supporting people with autistic spectrum disorders is around £27.5 billion; £16.25 billion is for services, £10 billion for lost earnings—either for the individuals

19 Mar 2008 : Column 326

or their families—and £1.25 billion is for family expenses. If only there was better diagnosis, more appropriate support and better understanding much of that cost and suffering could be reduced. I support those who say that now is the time to look towards a national strategy with increased funding for research into the causes, the diagnosis and the treatment of autism, thus bringing forward the development of effective therapies.

We need to mandate early development checks on young children that look for signs of autism, and I endorse the comments made by the noble Lord and by David Cameron about the importance of health visitors. We need clear standards for diagnosis, access to early intervention and goals for educational services. It is not acceptable that there are 6,500 fewer state special school places now than 10 years ago. In that time, 147 special state schools have closed, yet these are children who it is extremely difficult to integrate in mainstream education. We need to improve professional training and set standards for social services provisions that recognise the lifelong nature of autism. We need to establish employment support mechanisms specific to autism that allow people with autism to find work that exploits their strengths rather than exposes their weaknesses. We need to monitor and encourage, if not enforce, national standards of provision.

Now is a timely moment for this debate, which is so overcrowded that we have all had to condense our comments not to just a minute, but to three minutes. I hope the Government will take seriously the messages from it and will act.

8.01 pm

Baroness Tonge: My Lords, I congratulate the noble Lord on securing this debate. I shall make some brief comments from my experience over the years in general practice in community health, as chair of social services in my borough and from my time as a ward councillor and a Member of Parliament. I am sad to say that in all those roles I met many constituents with children in the autistic spectrum and the children themselves, of course. There was poor provision then as now, despite the Government's worthy statement of intent in 2006 entitled Better Services for People with an Autistic Spectrum Disorder. The combination of difficulties in social interaction, communication and social imagination is notoriously difficult to pick up in the milder cases that are sometimes thought to be due to poor management of the child by the family, which can lead to a big delay in diagnosis. There is often confusion about who is best able to deal with the problem, and the lack of joined-up working between health services, education and mental health services needs to be addressed urgently. There are still many areas in this country with no designated person for autistic spectrum disorder advice and support, let alone a team. As the noble Lord, Lord Maginnis, said, we need teachers in every school who have had training in recognising this disorder.

Last week, I was disturbed to hear a senior forensic expert at Scotland Yard call for recording the DNA of

19 Mar 2008 : Column 327

children who may be at risk of falling into criminality. If that happened, I wonder how many children with an autistic spectrum disorder, who did not have educated and battling parents supporting them and demanding treatment and care, would be seen as just naughty, antisocial and unresponsive, and be marked as future criminals and recorded as such.

Every area needs a clear strategy and varied facilities for children with ASD, as we have heard. We needed them 20 years ago, and they are still lacking. Finally, I wish to put in a plea for the many families, and mothers, in particular, who have a child with a severe form of autism. It often means family break up: the father leaves because he cannot stand the stress and siblings become difficult and often frightened. If I had time, I could relate many cases where that happened. Mothers face a lifelong commitment to a child, and subsequent adult, with whom they cannot communicate and for whom they can do very little to help. In concentrating on provision for autism, let us not neglect the rest of the family who need so much support.

8.04 pm

Baroness Warnock: My Lords, I too am grateful to my noble friend for inaugurating this debate. I join him in pressing the Government to take seriously an overall strategy for the whole of the United Kingdom. However, there are certain difficulties. It is generally quite helpful and illuminating to talk about people on the autistic spectrum, but there is a huge difference between those at the severe end and those at the milder end. Overall, in the United Kingdom, autistic people at the severe end are, up to a point, well looked after educationally in special schools or special units. It is those at the milder end—the Asperger's children—with whom I am particularly concerned, as they really suffer.

We have often been told, especially by my noble friend Lord Rix, who is not in his place, not to muddle up mental illness and special educational needs. In general, I am sure that is good advice, but in the case of people suffering from Asperger's syndrome, the distinction may come to seem artificial. The special needs of the Asperger's child, while consisting of sometimes patchy and unequally distributed abilities, lie more crucially in the area of social and emotional intelligence. That child's inability to understand other people, their conventions, their jokes, their metaphors and, above all, physical contact with them makes his life in a mainstream school often little short of torment. In turn, that very often leads to severe depression, self-harm and general anxiety symptoms. When she replies, I would like the Minister to tell the House whether there is any progress on setting up small schools where an Asperger's child will be known to all the teachers and where he will know all the teachers and the other staff. I am convinced by all the schools that I have visited, which are many, that that is the only educational environment within which such children, often eccentric, often highly gifted, but living in a state of constant anxiety, can genuinely feel part of the school and included. I would also like to know whether there has been an increase in the number of special schools that specialise in this disability.

19 Mar 2008 : Column 328

Finally, I call your Lordships' attention the extreme difficulties that autistic spectrum adults find in getting treatment if they also suffer from depression or obsessive or anxious behaviour. They seem to fall between the responsibilities of the medical and the social services. Nowhere is co-operation between the services more badly needed.

8.07 pm

Baroness Uddin: My Lords, I thank the noble Lord, Lord Maginnis, and support his call for a national strategy. I declare my interest as a trustee of Autism Speaks UK, and I commend the words of the noble Baroness, Lady Bottomley, about Dame Shirley. She is a unique champion. I am the mother of Shamim Uddin, and I have talked about him before. It is that experience that colours all my opinions on this matter. I should say how wonderful it is to perceive so much common ground across the Floor on this. We have been complementary to each other's arguments, which has made for a strong debate. I take this opportunity to commend the UN Secretary-General and the General Assembly for launching the first World Autism Awareness Day on the recommendation of Qatar, and I congratulate Qatar on leading it. I am confident that such events will be a further catalyst to changing some of the experiences of more than 60 million people with autism around the world, particularly the 500,000 or so people in the UK.

I am like a broken record in that I want to restate what great strides we have made. It would be remiss of me not to commend the Prime Minister, Ed Balls and, of course, my noble friend Lord Adonis for their consistent attention and support on this issue. However, the fact remains that we have to acknowledge that, as has already been stated, huge disparity prevails in parents trying to access education, health, specialist speech therapy and respite care. There is some excellent provision, as the noble Baroness, Lady Bottomley, mentioned—TreeHouse is a fantastic example—but such facilities are few and far between. These benefit primarily children and in no way translate into provision for adults. After my last Question in the House, I was inundated with letters and e-mails explaining to me in detail how many parents are continuing to struggle with adult sons and daughters. Time does not permit me to acknowledge some of their experiences. However, I would like to acknowledge and reiterate my support for the efforts of Ivan and Charika Corea, the parents of 12 year-old Charin Corea, who launched the autism awareness campaign in 2000.

I would like to see the Chinese wall dismantled where parents continue to suffer from disjointed services and a postcode lottery. This is nothing new, but we seriously need to address the inequality of provision, particularly for those over 18. Therefore I remain persistent in my call for an autism task force which will provide us with a better rationale for a 10-year strategic plan. On this occasion, I rest my case and ask my noble friend the Minister to say whether we can expect this from her and whether she supports the call for a national strategy.

19 Mar 2008 : Column 329

8.11 pm

Lord Astor of Hever: My Lords, I declare an interest as the father of an autistic daughter. Like the noble Baroness, Lady Uddin, that very much dictates my views on autism.

I believe that more could be done at both a national and local level to help people with ASD and their families and carers. A strategy along the lines of the learning disability White Paper, Valuing People, would be a significant step in ensuring that people with autism receive the support that they need.

I am concerned by new findings from the National Autistic Society. Its report, I Exist, showed that almost two-thirds of adults with autism do not have enough support to meet their needs. More than nine in 10 parents were worried about their adult son’s or daughter’s future when they are no longer able to support them. One of these parents, a mother of an adult daughter with autism, expressed her concern about the future by saying:

I am sure that we all feel for this family and for families like them. I hope we can also be united in our agreement that there is an urgent need for the Government to take action to help transform the lives of people such as these.

We still do not know how many adults there are with autism in the UK as there have been no prevalence studies into the number of adults with autism. This lack of information has a negative impact on the planning of services. Seventy-seven per cent of primary care trusts do not keep a record of how many adults with autism there are in their area and 86 per cent of local authorities say that if they had more information about the number of adults with autism in their area it would help with long-term planning.

I would be interested to hear from the noble Baroness whether the Government have carried out any research into the number of adults with autism. I would also like to hear how the Government intend to ensure that adults with autism are explicitly included in the joint strategic needs assessment that local authorities and primary care trusts are now required to produce.

The NAS report highlighted the desire of local authorities and primary care trusts for assistance from the Government to help them to support adults with autism. I am pleased that the Government issued Better Services for People with an Autistic Spectrum Disorder in 2006. However, that publication only clarified how existing government policies applied to people with autism. It did not attempt to produce a coherent strategy to meet the needs of people with autism.

Even after the publication of Better Services, 98 per cent of local authorities and 100 per cent of primary care trusts said that the Government could provide them with more guidance and assistance to

19 Mar 2008 : Column 330

support adults with autism. This near universal demand for more support highlights that the Better Services report is not in itself sufficient in tackling the social exclusion experienced by adults with autism.

8.15 pm

The Countess of Mar: My Lords, I thank my noble friend Lord Maginnis of Drumglass.

The impact of having a child with autism is not understood by many, including professionals who are responsible for providing services for autistic children and their families. Parents are often blamed for failing to discipline a child when in fact they are doing their very best. Unthinking remarks made when parents are exhausted and at the end of their tether are extremely hurtful. Organising life around a severely autistic child who has no verbal communication, rarely sleeps and who has to be watched every moment is more than most of us could cope with. Parents of such children have my admiration and respect and deserve all the practical and emotional support that society can provide.

Parents usually know what helps their child most. Often they are not listened to. There is a sub-group of autistic children who suffer extremely painful inflammatory bowel disease. Many children cannot express their pain in words, but parents know that their child is suffering dreadfully. Children who can explain their symptoms are often ignored. I have many letters from distraught parents who describe their experiences in doctors’ surgeries and clinics. Some of these letters are so harrowing that I wonder how members of the medical profession can be so callous. It can take many months, or even years, for an accurate diagnosis to be given. Parents trail from doctor to doctor, here and in the USA, in an attempt to obtain relief for their sick child. Very often it is in the States that a diagnosis is made and medication prescribed.

These children are sometimes difficult to examine and may wreak havoc in a surgery, but there is no excuse for a doctor’s refusal to listen to a troubled and exhausted parent or to examine a child who is reported to be sick. I ask the Minister what advice she would give to parents who find themselves in this predicament. It should not be necessary for them to mortgage their homes or to borrow from relatives in order to go to the USA for definitive treatment.

Some parents have found that their child’s symptoms are relieved by dietary changes. Anecdotal evidence indicates that a gluten-free or a casein-free diet may be particularly helpful for some autistic children. However, it is expensive. Until the science catches up, is there any reason why gluten-free or casein-free foods should not be prescribed for children who are shown to benefit, as they are for coeliac patients?

While provision for children with severe autism is far from perfect, there is a crevasse into which they fall when they reach adulthood, as other noble Lords have mentioned. There are very little, if any, social services or medical support, and respite care seems a distant dream. The whole family lives in the constant fear of what will happen if the parents die before the

19 Mar 2008 : Column 331

child. Society already marginalises them and few have a support network of friends and relations. There is an urgent need for structured provisions to be made to support autistic people throughout their lives and the lives of their parents on to their own demise.

As we have already heard, change is an anathema to many autistic people. Time is necessary to enable them to build a relationship with a new person or group. They should be confident that the emotional, social and physical support does not disappear at crucial moments in their lives. We know that proper provision in Wales, Scotland and Northern Ireland is progressing apace. Will the Minister tell the House what progress is being made in England?

8.18 pm

Lord Rogan: My Lords, I, too, am grateful to my colleague, the noble Lord, Lord Maginnis of Drumglass, for initiating this debate on autism services today.

The shock of discovering that one has to deal with autism is all too often magnified by the sense of hopelessness that results from trying to deal with disparate and detached agencies. The Audit Commission reported five years ago on autism. That report stated:

Little has changed, and that is why the current review being chaired by my colleague is so terribly important. One matter that I know he proposes, but obviously did not have time to speak about tonight, is his “one-stop shop” concept.

Autism spectrum disorder can necessitate working with social security services, speech therapists, occupational therapists, paediatricians and psychiatrists. Doing all that and trying to cope, a parent may indeed have to give up work. There is all that to begin with, and then, depending on the degree of co-morbidity, there is liaising with other medical disciplines. Later there may be a similar need for additional liaising with others in the educational sector.

Would the Government be sympathetic to a concept where local government would equip and provide six to 10 facilities with phones and computer terminals, where direct links could be established and co-ordinated with specialists and consultants who themselves may be scattered around clinics, hospitals and offices? This is a nightmare for any young mother. I have seen mothers having to trail around to social security offices where the young person at the desk has not even heard of autism. Voluntary groups could be contracted to man such centres, as could retired experts. There is a huge wealth of talent out there waiting and willing to be utilised. The noble Lord, Lord Maginnis of Drumglass, said that there is so much good will out there, willing to help and just wanting to be asked. That could happen in every town with a population of, say, 15,000 to 20,000, and could

19 Mar 2008 : Column 332

be established to meet local needs. It is essential to have a single point of refuge and help for families under this pressure, and such a facility could have a host of other multidisciplinary uses. Finally, would the Minister be willing to investigate how this could be set up and made to work for the benefit of the many?

Next Section Back to Table of Contents Lords Hansard Home Page