World Autism Awareness Week

Natalie McGarry Excerpts

Thursday 28th April 2016 Commons Chamber

[Natalie McGarry (Glasgow East) (Ind)]

Let me add my voice to those who have already congratulated the right hon. Member for Chesham and Amersham (Mrs Gillan) on initiating the debate, and on the work she has done over the years to raise awareness of autism. Let me also say that it is a pleasure to follow the powerful and informative speeches that have been made by Members on both sides of the House, and, in particular, by the hon. Member for Berwick-upon-Tweed (Mrs Trevelyan).

Autism is a spectrum disorder, which means that there is a wide degree of variation in the way in which it affects people. Every child or adult on the autistic spectrum has unique abilities and symptoms, and experiences various challenges. Some of the many challenges that they may face include difficulty in understanding other people’s feelings and reactions and interpreting non-verbal clues, difficulty in recognising people’s faces, and difficulty in understanding facial expressions. Children and adults with autism spectrum disorders may find it difficult to regulate their emotions or express them appropriately. For instance, they may start to shout, cry or laugh hysterically for no apparent reason. When stressed, they may exhibit disruptive or even aggressive behaviour, breaking things, hitting others or harming themselves.

The condition itself can be isolating enough without society’s reinforcing it through “othering” and stigmatism. Society itself can disable more fully than any condition. The behaviour of people on the autistic spectrum makes it very difficult for them and their families to take part in social events, or to perform everyday tasks such as shopping or using public transport. The pressure of dealing with such situations—which were described so vividly by the hon. Member for Argyll and Bute (Brendan O’Hara)—can be overwhelming for autistic-spectrum people and their families, and, as we have already heard, families often choose to exclude themselves from everyday life in their communities rather than put up with stares and whispered comments.

Autism is so poorly understood—even, in some cases, by health professionals—that children on the spectrum are often seen as being “naughty” or poorly parented. It is widely acknowledged that early diagnosis and therapy are critical to improving autistic-spectrum people’s chances of overcoming developmental delays, but the road to diagnosis is, all too often, very difficult and time consuming. Parents must fight for diagnosis in order to gain access to appropriate services. That places an added burden on stressed, sleep-deprived, struggling families who are already coping with extraordinary pressures and challenges to family life. On average, adults must wait two years for diagnosis and children more than three and a half years after being referred by their GPs. Although guidelines from the National Institute for Health and Care Excellence say that the wait for a diagnosis should be about three months, some children and their families are having to wait for more than 10 times the recommended period. We are failing those children and families.

A rarely mentioned consequence of families’ struggles with challenging and unusual behaviour is the impact that that can have on siblings and family life. The mother of a young autistic-spectrum child in my constituency explained to me recently that if her son was struggling to deal with a birthday party, a noisy branch of McDonald’s or a busy shopping mall, the whole family had to leave.

We must aim to improve the structure, process and outcomes of care for these children and their families. Autism teams conducting assessments of children, young people or adults should be specialist, integrated teams with access to speech and language therapists, occupational therapists, and clinical and educational psychologists. Systematic assessments for conditions that co-exist alongside autism should be part of the diagnostic pathway as required by the Autism Act 2009. This is particularly important because people with autism might have co-existing physical health conditions and/or mental health problems which, if they go unrecognised or untreated, could further impair their psychosocial functioning and place additional pressure on families or carers.

Because of their social communication difficulties, some people with autism may find it particularly difficult to communicate their needs and to access mainstream health and social care services. People with autism should have a personalised plan that is developed and implemented in a partnership between them—and their family and carers, if appropriate—and the autism team. People on the autistic spectrum are unique, sensitive and often highly intelligent individuals who desperately want to be part of their local and wider community. With more support and understanding, that is achievable. We can and must do better to secure better outcomes for adults and children with autism.