Where There’s a Will, There’s a Way: A Parent's Odyssey Through the World of Autism - Part 1

Here, at the front of the twenty first century, we still have much to learn about autism; yet, admirable strides are being made in providing accommodations and inclusion for those on the autism spectrum. However, fifty-sixty years ago, the world’s understanding of autism was significantly more limited, at best. Misdiagnosis and ineffective or detrimental care was too often the norm. Professionals and parents alike were struggling to understand and assimilate the information provided by such pioneering doctors as Leo Kanner (Kanner Syndrome) and Hans Asperger (Asperger Syndrome), while weeding-out falsehoods like Bruno Bettelheim’s discredited “Refrigerator Mothers” theory. During this time, in the United Kingdom, there was a small but mighty group of parents and professionals that were taking the care and future of their loved ones with autism into their own hands, and making history. One of those remarkable people was Gerald de Groot, whose son, Mark, was diagnosed with autism fifty-six years ago. As one of the founders of the U.K.’s National Autistic Society, Gerald’s unique journey is rich with information, insight, and inspiration. He has graciously provided us with an article, in his own words, detailing the highlights of his continuing odyssey. Heart magazine is posting his wonderful story in three separate installments, so our readers can experience the fullness of the journey. Enjoy!

by Gerald de Groot

"It is probably a misprint for ‘artistic’." Thus my local doctor on reading out a letter from a child psychiatrist declaring that my son was 'probably autistic'.

It was late 1962, when my son was two and a half years old, and little or nothing was known of autism in Europe at that time.

My son was extremely beautiful. Lorna Wings’s pioneering work Early Childhood Autism has a photo of a young boy, “Martin” demonstrating how very good looking these children can be. It is, in fact, a photo of my son, Mark, at age three. He was also usually very quiet and willing to be left alone for hours simply sitting and rocking. But he did not develop speech and could not be toilet trained He seemed to have an excellent musical ear and before age two was able to perfectly sing melodies from Christmas Carols and songs my wife and I were always singing to him. As he developed some speech and a more adjusted personality he lost this skill. He was a delight, but we were worried.

One of a series of programs dealing with various aspects of mental illness on BBC television at the time was devoted to “Childhood Schizophrenia”. We recognized some of the symptoms in Mark, although he passed with flying colors the “Mirror Test”. We consulted our doctor who sent us to the famous children’s hospital in Great Ormond Street, London. There we saw Dr. Mildred Creak who was probably the only pediatrician in the United Kingdom at that time who had studied autism in the United States. It was she who wrote the letter my doctor read to me.

Not being satisfied with my doctor’s interpretation I phoned a relative of a relative who was a consultant psychiatrist and asked him what “autism” meant. He consulted a specialist colleague and phoned me back with what proved to be not only an accurate diagnosis, but also a prescient prognosis.

A further meeting with Dr. Creak established that there were no facilities available in the United Kingdom which were specific to autism, but she did put me in touch with a small group of similar parents who had been meeting for the last six months.

I joined them and apart from providing mutual support, this group proved to be most significant in the development of, publicizing, and understanding the condition; and providing resources for education and care of sufferers. It included at least three people who were to play an important part in all this: Lorna Wing, Michael Baron, and Helen Allison.

In view of later developments in the world of autism it is important to emphasize here that these children were diagnosed on the basis of the Kanner syndrome, developed in 1943. This syndrome asserted that the condition manifested itself before age three and was a lifelong affliction. It certainly described most of the children of this particular group of parents. But at least two of them would now be seen on the upper level of the spectrum, and possibly as “Asperger’s”. One, a female, has subsequently married and had children, and the other, a male, has become a successful artist.

We formed a charity, which after several changes of name, morphed into The National Autistic Society, now one of the largest charities of its kind in the world.

For many years, I served as a member of the Council and on the Board of the NAS the Constitution of which provided for an elected Council with regional and national members out of which a Board was elected. It was enshrined that at least 51% of the Council should be parents or siblings of children with autism. But see later.

We started the first school in this country - possibly in Europe -for autistic children under the inspired headship of the famous pioneer, Sybil Elgar. While we raised the capital for the building

and equipment, all fees, covering among other things staff salaries, were met by Local Authorities. This was in accordance with English law and was a matter of principle for the NAS as it meant that all applicants were treated on an equal footing. A principle which applies to all NAS schools and residential units to this day.

This was around late 1964 and as we did not succeed in getting our son accepted at the school - children of Board or Council members received no special privileges- and as some of the publicity we were generating had raised awareness slightly - other private organizations were beginning to emerge.

At this time my son, Mark, while being in many ways delightful, was nevertheless inclined to self-harm, could not be toilet trained, and did not develop meaningful speech, although he did indulge in some echolalia. And he could be subject to screaming fits and throwing himself on the ground in public places, such as supermarkets.

We tried a private school in North London run by a woman named Alice Hoffman. He seemed to enjoy attending, but his symptoms did not improve, and as Miss Hoffman became involved with the Scientology movement, we withdrew him.

I took my wife and son with me on a business trip I had to make to New York at this time, where we consulted Dr. Louise Bender. After observing Mark she told me to enjoy him while we could, implying that in the not too distant future it would not be possible. Well, he is now 56 and we continue to enjoy him, immensely.

We then turned to psychoanalysis and even moved house to live within walking distance of a child psychoanalyst who was prepared to take Mark on. My wife, at the time, did not drive, and because of his behavior he could not be taken on public transport. These, extremely expensive, sessions were not covered by Government aid; at first three times a week, but reducing to once a week, continued for about eighteen months. At this time Bettelheim’s pernicious “refrigerator mothers” theory was already being discredited, but in desperation we were willing to try anything as long as it could not be harmful. And he did seem to enjoy the sessions although they in no way modified his behavior or helped his speech.

On a second application Mark was accepted for the NAS School and we ceased the psychoanalysis.

From then on, Mark, as did most of the children in the school, showed real improvement.

He was at the school for ten years and developed into a relatively calm adult - given to occasional bursts of anger and frustration- who enjoyed going with us to restaurants, pantomimes, musical theatres, visiting friends, and so on.

His speech remained impaired but he grew to understand most concrete instructions and statements and was, is, able to make most of his needs known with the use of a limited vocabulary. He retains his obsessive behavior and needed, and needs, a familiar environment and set of activities if extreme anxiety is to be avoided. He has no understanding of money, little sense of danger, and will clearly need to live in a protected environment throughout his life. A consideration which led to the next major development.

Part 2