NEURODIVERSITY FEATURE
Autism . Much more has been said about it in the last few years – in professional , general and social media , in books and blogs , and even celebrities talking and writing about their own diagnoses as adults and what it has meant for them .
The increasing number of adults presenting with autism spectrum condition ( ASC ) is something that I hear a lot about in my role as an NHS advanced specialist practitioner / occupational therapist in autism . A large part of my working week is spent providing training and specialist consultation to mental health practitioners from varying professions and services . There has undoubtedly been an observable increase in incidence over recent years , due to our growing understanding of the condition .
And yet there still remains very little formal professional training available on neurodiversity – what it is and isn ’ t , how it might impact on someone ’ s physical and mental health and wellbeing , how it presents in individuals , families , cultures and social environments .
To fully understand neurodiversity , we have to understand the impact of our own thinking – which is a whole other topic for another day .
According to Autistica , a UK research-based charity (
www . autistica . org . uk ), approximately 60 per cent of people with autism do not have a learning disability .
There is a definite scarcity of robust clinical evidence around effective support for autistic adults without learning disability ; it is difficult to find reliable evidence that identifies effective intervention strategies , and even harder to find evidence that explores the potential role of occupational therapy .
With a background of 30 years of clinical experience , I have spent the last 10 years or so working as an autism diagnostician , specialist occupational therapist and team manager . I have worked within a variety of services that offered a range of things – some much further down the road than others in terms of providing postdiagnostic support , psychology-based interventions , group work and one-to-one holistic support for people on the spectrum . The national offers vary , but what most services do unfortunately have in common is long waiting lists , often due to commissioning and funding limitations .
Until a few years ago , very little was understood about autism . Many people would relate their perception of it to Dustin Hoffman ’ s character , Raymond Babbitt , in the 1988 film Rain man . Such influences have continued to exist , and the commercial success of that film meant that this perception has carried on for the last 30 years or so .
But the film has been accused of preventing people from really understanding neurodiversity and maintaining the myth that people with autism are simply ‘ different ’ to everyone else – complex and difficult to understand or communicate with .
In my job , I have worked with around 800 people with autism – as well as their families , friends , supporters and professional workers . I also have many friends on the autism spectrum , and this quote from Dr Stephen Shore certainly resonates : ‘ If you ’ ve met one person with autism , you ’ ve met one person with autism .’
Rain man did its job in raising the existence and public profile of autism , but it did not address the issue of individuality and the multidimensional spectrum of experience and being that it really is . And it certainly did not help us to understand and embrace neurodiversity .
Autism is a lifelong developmental condition , according to the National Autistic Society (
www . autism . org . uk ). The needs of an autistic child are likely to differ substantially from that of a middleaged woman on the spectrum or a person in later life .
According to the UK Government ’ s statistics , autism affects a hypothetical 1.1 to 2 per cent of the UK population . That equates to around 70,000 autistic women , men and children in the UK and could potentially be much higher . Autism is clearly not a rare condition .
People with autism are at much higher risk of developing mental and physical health problems and are often lacking appropriate and effective support because of poor understanding around their needs as individuals . Women ’ s experience of the autism spectrum has not been well recognised until recently and many have never found the answers that they are seeking .
What is often further lacking in general understanding is that autism affects everybody differently . If you break your leg and I break mine , then the treatment will be very similar . This does not work when we think of neurodiversity .
This of course is the idea of a ‘ spectrum ’ – everyone has their own theme tune of strengths and difficulties , of black , white and grey areas , of likes and dislikes – all impacted by our experiences in life , our surroundings and social networks . The key , as we occupational therapists have always known , is to get to know each person holistically and individually .
The unique core skills of occupational therapy fit perfectly with this approach . Therapists ’ ability to view each person holistically provides the template for working highly effectively with adults on the spectrum .
Abraham Maslow , in his 1943 paper , proposed the now-familiar ‘ Hierarchy of needs ’ – we all need to have our physiological and safety needs met before we can then establish identity , love , belonging and esteem and eventually achieve our potential through self-actualisation .
As therapists we also understand that purposeful occupation , belonging and social connection , having meaningful roles in life , a feeling of control and empowerment over our own lives , and meeting our physical and emotional needs are all vital in ensuring wellbeing . All of these are key considerations when working with adults with autism .
This also links to recent findings around the risk of suicide in adults with autism . A 2018 study by Sarah Cassidy et al , confirms
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