In light of World Autism Awareness Day on 2 April, Sinéad Gillepsie, who has a son with Asperger’s Syndrome, says adults with Asperger’s and high functioning autism can be helped by taking into account five daily necessities to maintain sound mental health outlined in a recent report
“Recovery is about recovery of well-being and the capacity to lead as full a life as possible.
Recovery is not necessarily about a cure…” This is a quote from Somerset Partnership NHS and Social Care Trust. This is exactly the attitude we want from the service providers supporting adults with Asperger’s Syndrome and high functioning autistics.
On its website the National Autistic Society says this group “with the right support and encouragement…can lead full and independent lives”. But 40% of these adults live at home with their parents, which is not what any of us would call a full and independent life.
A healthy aim is, at the very least, supported accommodation and at very best, living in their own choice of home, with the right level and nature of ‘support and encouragement’ to realise their full potential. This is not an unrealistic pipedream. My son is a robust and eloquent Asperger’s adult of 20. He may be studying forensic science at college, but he won’t remember to drink or eat without prompts. I tell his social workers (and all the various service providers and educators who come into our world as a matter of necessity and reality) that Oliver is a success story waiting to happen. It all depends on attitudes and beliefs.
So let us consider ‘social recovery’. Asperger’s and similar features of high functioning autism are described or explained in terms of the ‘triad of impairments’. This triad shares a key word – social: social impairment; social behaviour; social interaction. In this sense then, ‘social recovery’ could be very specifically targeted as reducing the degree of difficulty in these areas.
Now, we are determined to be solution-led. However wonderful the concept, the way forward must be concrete, real, logical, progressive. And we see hope in the findings from Foresight’s Mental Capital and Wellbeing report last year which sets out the five daily necessities to maintain sound mental health. Although we know that autistic spectrum conditions are developmental disabilities, our adults most often fall under the care of mental health teams.
The five dailies are:
1 connecting with others.
2 being active.
3 being curious/enquiring.
If these five dailies were met we would see enormous changes in our autistic adults and in the quality of their lives.
Oliver attends college three days a week. On those days four dailies are regularly met: he is active, learning (in the most obvious sense), and often enquiring and curious about the world. He is connecting with teaching staff, and his peers, though usually to a lesser degree. Perhaps on a good day, he also gives to others, but he has to be supported to do that. The other four days of his week don’t read so well. He lives in the family home and goes nowhere without another adult. He is vulnerable and completely dependent. He connects with whoever is in the house. He is inactive, preferring reading, films and console games to going anywhere. He withdraws and forgets to notice the world around him. He is only learning when we make him join in a household chore.
College won’t be forever. And we do dream that Oliver will live independently one day. But if left to his own devices, and unsupported in the five dailies, he will decline. We can do our bit now if all of us involved in his development adhere to those five principles and put them into action. This would be most readily achieved if the five dailies are the basis of his recovery care plan as overseen by his care co-ordinator.
We are delighted that Sompar (Somerset Partnership) and Somerset Council accept the importance of the five dailies in principle. It is our aim to take that further and to bring them to the front line. A sure way to do this is to write recovery care plans accordingly and make the changes happen. Using the five dailies alongside the triad of impairments to assess need, and individual budgets or direct payments to fund like-minded workers, this group could be much happier and successful in supported accommodation and their own homes.
Indeed, steps are already being taken in this direction as demonstrated by Campbell Main’s review of his son’s care plan, developed with specific targets integrating the five dailies. Campbell is the Somerset branch officer of the National Autistic Society and his adult son, lives in his own home with support.
It is our aim to influence ideas and practice, to share our optimism and bring more service providers on board. We’d like to see autism friendly care plans taking shape so people can indeed ‘lead as full a life as possible’ as soon as possible.
More on World Autism Awareness Day