Where There’s a Will, There’s a Way: A Parent's Odyssey Through the World of Autism - Part 3
by Gerald de Groot
It quickly become apparent that the NAS could not be looked for to supply the monies that went beyond the essential and basic needs of residents, but which could make a great difference to their quality of life. Indeed just the opposite.
As a large National charity with a number of schools and adult residential units, a diagnostic unit, outreach work, a central headquarters and regional offices, the NAS takes a proportion of fees from all schools and units to help meet its overheads and developmental work. It was therefore decided to set up a separate and completely independent charity, which had the sole aim of helping residents of Somerset Court. It was to be mainly a parents/guardians/advocates charity, although other individuals could be members if they wished. It was called The Somerset Court Autistic Trust - known as SCAT. I chaired and ran SCAT from its inception until the end of 2014. Although there were three trustees, I, in effect, ran the charity from my home and as a result I believe we were unique in being a charity with no overheads.
The Court that exists today is very different from the one that was initially set up. It has been completely rebuilt. This came about by chance, but it was none too soon. For some time the precepting authority’s (Somerset) inspectors had been pointing out that the residents who were housed in the main building were living in conditions that did not meet current statutory standards and had to be re-housed, either on the Court or elsewhere. In the late eighties Mr. and Mrs. Burnell - parents of resident Helen Burnell - were at a dinner party where they met a man who had just set up a charity with the object of building for people in need. They told him about the Court and he asked to meet the chairman of SCAT. I met with him within a few days and this was followed over the next twelve to eighteen months by visits to the site, the gaining of planning permission, the building of two new buildings named Knoll and Lakeside houses and of new woodwork and horticultural units.
The individual who planned, initiated and paid for all this has always insisted on his anonymity, and is known to us as Our Benefactor, or OB. His legal agreement was with the NAS as they were the freeholders on which he built, but all personal contact, planning, and discussion was with SCAT.
This rebuilding completely transformed the Court, and turned it into the campus we know today. It is probably not going too far to say that without OB and SCAT, the Court might well have been closed down. By this time, Sybil Elgar has retired and a new Manager, Bob Reynolds, was in place. The new site was formally opened by Her Royal Highness the Princess Royal, Princess Anne.
Today there are six purpose-built houses at Somerset Court, which enable people to live ordinary day-to-day lives in small groups, with the help of our specialist staff. Everyone has their own bedroom, and we encourage them to make their rooms their own by choosing the decor and accessories. In each house there are the facilities you would find in any household: a PC, music, games, and puzzles. People share the kitchen, living room, and dining room, coming together for meals and activities such as arts and crafts. We have 42 residents and a staff of approximately 120 providing 24 hours, 365 days a year care.
My son has benefited enormously from all this, and has grown into a charming, loving, and mainly happy adult - he is now 56. He has had from time to time periods of extreme anger and frustration - sometimes lasting weeks - during which he has been unable to express what is troubling him. But these periods have been rare and seem to have diminished in frequency as he has matured. He gets great pleasure out of cycling - which he does on a daily basis- horseback riding, swimming, visiting restaurants, working in the woodwork center, coming home to see his parents - we also visit him about six times a year, and going on holiday with us to Spain where we had a villa, but which we now rent. He also loves large animals, particularly rhinoceroses, and so there are regular visits to the zoo. By a fortunate coincidence, the main center for breeding rhinos in captivity is relatively near our house, and we go there whenever he comes home to us. I am grateful that within his limitations he does have a much fulfilled life.
I believe this all this demonstrates what determined parents can achieve, but, of course, they have to live in a country where a certain amount of governmental support is available.
Finally I would comment that the acceptance of the spectrum, of which Lorna Wing was the pioneer, has changed the very nature of the NAS, with the inclusion of Asperger’s sufferers; and those on the “higher” end of the spectrum the number of members increased dramatically - as did the diagnosis of the condition. Many of these new members were able to argue their own case and wished to do so. The upshot was that they brought about a change in the Constitution removing the need for over half of the Council to be parents or siblings. The obvious benefits have been the great increase in awareness of “autism”- note the ubiquitous presence of an “autistic” character in films, novels, and TV dramas- and the resultant increase in funds raised by the Society. Although this is to some extent offset by the great increase in the number of people for whom they care. But not everybody accepts the validity of the spectrum. Some question its etiological basis - are we comparing apples and pears? For the purpose of help and treatment, perhaps a useful distinction should be made between those who are likely to need a protected environment throughout life, and those who could function, with more or less aid, in the “real” world. It is manifestly ironic that with the development of the spectrum concept, the Society now finds itself trying to help people with levels of ability as diverse as those ranging from – as Lorna Wing put it- “very severe learning ability up to genius level”. The very situation the Society was founded to avoid.
And so the odyssey continues: There are old and new territories in the autism world that must be positively and effectively addressed. But the future is indeed bright, thanks to the hearts and actions of people like Gerald, who cherish and find joy in the lives of those who are differently abled.
For a comprehensive guide on helping children on the spectrum deal with new or unfamiliar social events check out Social Stories for Autism – The Ultimate Guide