Autism

Lord Warner Excerpts

Tuesday 22nd March 2016 Grand Committee

[Lord Warner (Non-Afl)]

My Lords, I am sure we are all grateful to the noble Baroness, Lady Browning, for giving us the opportunity to debate this important subject and for sharing with us her expertise and experience in this area. Despite my four years as a Health Minister, this is my debut on this subject. That probably indicates how hidden the subject of autism often is. My involvement arises from my experience with my six year-old grandson, who is on the spectrum and probably suffers from Asperger’s—I should declare this interest.

Normally, I never bring family matters into discussion of public policy in this House but, although I have not formally consulted my grandson about using his example, I am sure he would approve of my doing so today. He likes to star in stories about himself and his alter egos. One of his favourite alter egos is Seal, so I shall describe him as Seal for the rest of this speech.

My experience is that Seal has been jolly lucky with the individuals that he has encountered on the journey that he has travelled so far. That has nothing whatever to do with any NHS system. The NICE guidance could have been written in Mandarin Chinese as far as Seal’s NHS encounters go. What has happened is that he has never been through a CAMHS system and never really been referred by a GP, yet he has progressed through the system. Seal is a quirky, infuriating, endearing, courageous, vulnerable, obsessive, controlling, physically strong little boy who, for some of the time, is great fun to be with and, at other times, would drive a saint to distraction.

If, as a family, you have a diagnosis, you can learn how to cope with the predictable unpredictability of the young person’s condition. Perhaps more importantly, you can help the child to learn coping mechanisms for processing and dealing with this very strange world that he inhabits. Seal now knows that he is a very different person from the children around him in his mainstream school, but he also knows that there are a number of adults and other children who are trying to help him. Without that diagnosis and its follow-up, Seal would almost certainly not be in a mainstream school or have many friends his own age. Whether his family would have been able to cope with him must also be very open to doubt.

Seal is where he is not because of the NHS but almost despite it. An energetic nursery school manager pressured a local children’s community team to observe him and diagnose him. That team produced an excellent profile of him, and when he moved house the team did the right thing and passed the assessment to the GP practice in his new area. The practice promptly filed it and did nothing. Some time later, what I like to describe as a “House of Lords intervention” ensured that he was seen by a community paediatrician, who then worked with the school that Seal was placed in and produced a diagnosis. Seal has the services that he needs because of that school’s excellent SENCO, not because of the NHS. The school drove the preparation of an education, care and health plan and ensured that the community paediatrician gave a clear diagnosis. That has led to this child being in the system; the NHS has contributed very little to getting him into the system. It has taken three years, but I have to say that his experience has been very different from what I hear from many parents of children with autism who Seal and his family meet in the local support group.

I have told this personal story to illustrate the lack of any kind of easy-to-use system for many of the parents of autistic children. I have read the NICE guidance, and they are worthy, professional documents. However, I suspect that their recommended timescales for diagnosis are observed more in their absence rather than in the actual experience of parents. Relying on a GP referral to CAMHS is simply not a credible system unless there is to be a massive investment in GP training and CAHMS. Building alternative routes through nurseries and schools, and accessing community paediatricians, might offer the prospect of speedier diagnoses in some areas.

That does not mean I want the NHS to be let off the hook. It should certainly be capturing more data and comparing local health areas on the total time taken to secure an autism diagnosis. The NHS would be helped by working with local education systems if there were more progress on a common identifier for children who need both health and social care services. The Minister might like to give us some advice on how much progress is being made in this area, where change is long overdue. Will she also ask NHS England to separate the commissioning of autism services from learning disabilities, starting especially with children? If she cannot answer my questions today, I would be grateful if she could write to me.