The news today that eight out of ten doctors need more help to spot autism shows the huge gap in services available, particularly for adults with ASD in the UK. The National Audit Office survey found that thousands, especially adults, are failing to get the right diagnosis and hence the right treatment or access to support services that they need.
Eighty per cent of doctors said they felt they needed additional guidance and training to help them identify and treat people with autism more effectively. Indeed, outside this report, this figure is echoed in schools, where many staff say they also need additional training to help children affected with High Functioning Autism and Asperger's Syndrome.
The reports highlights the fact that high-functioning people with ASD are particularly vulnerable. They are often missed because around apparently 200,000 adults with autism do not have a particular learning disability. This group, the report "Supporting People with Autism through Adulthood" says, often fails to secure appropriate support, as health and social care services are mainly set up for those with a learning disability, a physical illness or disability, or a mental health problem (which autism is not).
Almost two thirds of local authorities say they felt that current services for adults with autism are limited. Providing specialised support could improve outcomes for this group of people and their carers, and potentially enhance value for money, as the costs of establishing such support could be outweighed over time by overall savings.
The truth is that often people with Asperger's Syndrome are of above average intelligence with areas of particular strengths, but because of their social and integration difficulties, they end up either in low-level jobs or on benefits because they do not have the interview skills to secure appropriate work.
The report says "Greater awareness of the numbers of people with autism, as well as better understanding of autism amongst those providing health, social care, benefits, education and employment services, would lead to improved quality of life for those on the autistic spectrum. Specialist support and joint working across all areas – clinical, social and employment – could improve the transition from childhood to adult services, make services more effective and improve value for money."
There are several bills concerned with autism going through parliament at the moment, as mentioned in earlier posts on this blog. For children, there is more recognition that children affected by Autistic Spectrum Disorders need additional support in social skills but even so, a recent Cambridge study found that for every three children diagnosed, a further two go undiagnosed. If these children go through school and into the bigger world without intervention, they will only add to the figures this latest NAO study has found.
I believe that teachers or at least one member of staff in schools, preferably the SENCO, should be well trained in spotting autistic spectrum disorders and should have the backing of the school to do something about it. However, it is sometimes the case that when the school does spot a need, they do not get the support of the parents to do something about it.
A further problem is that when people who have received services throughout childhood then reach adulthood, the support they have had simply disappears and they are left to cope by themselves, or often remain in the family home with ageing parents, unable to forge an independent life because of their ongoing difficulties. Indeed, the NAO report says a key factor would be that if the proportion of the local population with high-functioning autism were identified by specialised services and given appropriate support, they would be more likley to be able to live more independently or to obtain and retain employment. The report estimates that if such services identified and supported around four per cent or more of the adults with high-functioning autism in their local area, they could become cost-neutral across public spending as a whole over time, as well as resulting in additional earnings and reduced expenses for individuals.
She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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