Autism

Baroness Hollins Excerpts

Tuesday 22nd March 2016 Grand Committee

[Baroness Hollins (CB)]

My Lords, I refer to my interests in the register, including my chairmanship of an expert reference group on workforce learning disability services, and congratulate the noble Baroness on this debate.

My own expertise with autism as a psychiatrist is with the 30% of people with learning disabilities who also have autism. Some people with autism have a learning disability but most do not, which is a very important point to bear in mind. The Royal College of Psychiatrists joins the National Autistic Society and others in their concerns that the later someone is diagnosed, the worse it is for the quality of their life.

According to the National Autistic Society, 70% of autistic adults say they are not getting the help that they need from social services, and at least one in three autistic adults experiences severe mental health difficulties due to a lack of support. Without tailored support, people with autism can find it difficult to communicate their needs and make good use of mainstream health and social care services. This increases the pressure on families and carers and creates pressures within primary care and mental health services as they struggle to meet people’s needs, often when they are undiagnosed or misdiagnosed.

Individuals with the diagnosis, and their families, can feel overwhelmed without help and understanding. The absence of a diagnosis may mean that families are not communicating in the best way or that people are taking medication that is not needed and may be harmful. We already know that people with autism are vulnerable to mental health problems, with late diagnosis increasing this risk, and that 70% have at least one other mental or behavioural disorder, while 40% meet the criteria for two.

One man with autism, Chris, who waited until adulthood for a diagnosis, told the National Autistic Society that in his view before his diagnosis his needs were never met, and at times he felt suicidal. Having a diagnosis helped him to reach a place of acceptance and opened doors that were previously closed to him. He said that without the diagnosis he would have taken his own life.

We know that people with autism are also vulnerable to physical health problems. A recent study published in the British Journal of Psychiatry revealed that people with autism die 16 years earlier on average compared with the general population, and that suicide is the second commonest cause of death for them after cardiovascular disease. One problem with the study was that it was not known how many also had a learning disability, a known risk factor itself for earlier death, for which there is good research evidence.

We know that without proper recognition and diagnosis, children with autism may not be in the appropriate school environment and are at risk of being bullied, leading to isolation, depression and anxiety. Behavioural difficulties, if not properly understood, can put them at risk of being suspended, with profound implications for their future. We know that only 15% of people with autism are in full employment.

Autism, as we have heard, is a multidimensional neurodevelopmental disorder. It presents differently in each person, and diagnosis requires a multidisciplinary team to accurately decode behaviours and observations which may overlap with other conditions. There is no definitive medical or genetic test for autism.

There might be gender differences in how autistic traits present and are interpreted. The stereotype of a person with autism is an obsessional person somewhat locked into themselves; but girls present with more subtle difficulties. While in conversation they might be able to take turns to speak, make eye contact and engage in small talk, but they frequently do not understand the subtext. They tend to be better at social formatting, cutting and pasting someone else’s behaviour and trying to make it their own without understanding why they are doing it. There is no research on the number of women on the autistic spectrum but clinicians now suggest that there are probably a significant number of undiagnosed cases referred to adult mental health services for conditions such as depression, OCD, eating disorder or self-harm. Staff at an eating disorder clinic in Birmingham recently identified that between 60% and 70% of women in their 20s attending their clinic had undiagnosed autism.

A teacher at Limpsfield Grange School in Surrey, a school for girls with special educational needs and communication difficulties, noticed that a high percentage of the learners were showing behaviour on the autistic spectrum. Some of the girls were helped to write a book, M is for Autism, which asks the reader to view the world through the eyes of a girl with autism—for example, not having friends, not fitting in and feeling worried all the time.

Autism also presents differently in adults and children. People are less closely observed after leaving school, and many adults learn to limit their autistic behaviour. They face numerous misdiagnoses and potential iatrogenic harm before getting correctly diagnosed with Asperger’s or autism. There are also issues for older adults, whose autism might come to light at a time when they lose a spouse or in retirement because of their inability to adjust, or behavioural difficulties that present.

The Royal College of Psychiatrists expresses concern that there are insufficient trained staff to carry out a diagnosis. In order to tackle this, it has developed a quicker aid to diagnosis for psychiatrists and a training package. It is looking at how a basic essential knowledge of autism can be added to the training of all psychiatrists to ensure that general psychiatrists have knowledge and skills about autism in their core skillset. On its website, there is good-practice guidance on diagnosis.

Part of the conundrum is that autism has no cure and no single or clear causation. Prevalence is probably going up, and diagnosis certainly increases the number of children and adults identified with autism. Every person with autism is different, but receiving a diagnosis is a crucial step in their journey. For many people, diagnosis leads to better understanding of individuals for their families, as well as for education, health and care services and employers. For many people, diagnosis leads to adjustments in expectations, education and care. For others, more specialist support and long-term interventions are needed. The growing awareness of issues faced by people on the autistic spectrum is welcomed, but there are still too many people whose needs go unrecognised, misdiagnosed and unmet. We have made strides in the right direction, but we need to speed up the process. Will the Minister commit to sharing examples of good practice across England, and encourage areas that are lagging behind to implement it?