Muki Baum - Parent to Parent

My interview with Thelma Wheatley, Author of My Sad Is All Gone, a family's triumph over violent autism, Lucky Press, Fall 2004. Endorsed by Temple Grandin, world-famous high-functioning autistic icon, Professor at Colorado State University and author of 'Thinking In Pictures'.

- Bunny Iskov

Q - How old was your son, Julian, when he was first diagnosed with Autism?

A - Julian was four when he was diagnosed by a famous developmental paediatrician at The Hospital For Sick Children, Toronto, in 1981. The year before, at age three, he had been assessed by a speech pathologist as "a year behind". In actual fact this professional knew that Julian was autistic, but he and our family paediatrician chose not to tell us. Those were the days when clients did not have automatic access to their medical records and the doctor decided what was suitable for you to know. This issue is treated at length in Part One of my book, MY SAD IS ALL GONE.

Q - Tell me about the early years - where he went for treatment and his progress & development (of lack of) during that time.

A - Julian did not have any "treatment". There was no in-home treatment available in Mississauga. Autism was seen as incurable and that was that. The Geneva Centre in Toronto was lodged in a a house on St George Street, and did not service Mississauga/Port Credit where we lived. The only offer given us was permanent placement in Thistletown Regional Centre, where we would NOT be allowed to visit, lest we "interfere with the treatment". We were urged to give Julian up & put him away and get on with our lives. Keeping Julian would also, we were advised, affect our daughter's future marriage - she would not make "a good marriage" hampered by having a retarded autistic brother. Julian "would never amount to anything."

Fortunately, the Peel Board of Education ran a segregated TMR ("Trainable Mentally Retarded") kindergarten. There was no such thing as special individual classes for autistics since autism then was so rare. By the time Julian was nine there were finally four autistic children in the board and the school psychologist was able to set up an Autistic Primary Class in Port Credit for 4 children including Julian. This class served Mississauga South. However, even then there was no "autistic" program as such - it was just a rehash of the TMR program - which was not a bad program at all. It mainly fostered self-help skills and functional vocabulary, what was called "functional academics". Many 'TMR' children could read and write at a grade 2 level and eventually were transit-trained, and that was the level Julian reached too. By age eleven he could write a daily journal, beginning with underwriting, while I taught him phonetic reading and writing at home. The Lovaas approach and TEACCH was unheard of. (The Lovaas 'ME' Book came out in 1981, the year of Julian's diagnosis.) We tried to get the Peel Board interested in The Higashi School For Autism in Boston, which was producing wonderful results following the work of Dr Kitahara of Japan, but it was regarded as too expensive an approach. Julian himself was a typical autistic child - very sensitive, structured, rigid, obsessive-compulsive (his shirt had to be buttoned up to the throat at all times; we all had to sit in a certain formation in the car, round the kitchen table, etc.) He never gave eye-contact voluntarily, rarely called us Mom and Dad, but Thelma and Angus. He loved classical music & responded to Mozart.

Q - When did Julian become violent and self-abusive?

A - Julian's violence and self-mutilation began suddenly with the onset of puberty, at age thirteen. He would pace up and down verbalising in an angry way, denigrating himself, calling himself "You fucking retard, Julian Orchard," obviously echolalic repetition of words heard at school. By then he was in the intermediate TMR Class. All these TMR classes were integrated in regular public schools and some integration into regular classes took place, usually into music and library, art and gym. Julian's pacing intensified, as did the self-abuse. He would tear his nails down his face, ripping open the flesh, beat himself up, gouge his eyes, slam his head against walls smashing his gums until they bled. He hurled himself twice through our front picture window smashing it to pieces - but he had not a scratch! It was so amazing. Several times we had to call 911 for the Peel police officers to come to our aid. Julian would be shackled and taken to Mississauga hospital, tied up in 6-point restraints and given a huge shot of Valium in his thigh. About twelve midnight we'd all be released, to go to work and school the next day. Julian might have killed himself and/or us if we had not met Dr Joe Huggins of Toronto when Julian was sixteen, in 1993.

Q - Tell me about Dr. Huggins and his success with treating Julian.

A - Dr Huggins had a violent autistic son himself who had pulled out one of his teeth with a pair of plyers. He understood what we were going through and how ineffectual were the anti-psychotic drugs then prescribed by psychiatrists . This is because these older anti-psychotics were designed for schizophrenia not violent autistic individuals. Violence and rage behaviours in autism was 'the most overlooked aspect of medicine' wrote Dr Huggins in his article on his approach published in Ontario Medicine in 1993. Dr Huggins had taken a different approach, eschewing anti-psychotics (unless the autistic client happened to be diagnosed psychotic/schizophrenic). His approach was more physiological - he concentrated on using medications that would prevent the individual from going into rage behaviour by lowering the blood pressure and bringing an autistic's over-reactive adrenaline system under control - and it worked. In twenty-four hours Dr Huggins calmed Julian through the use of low-dose propranolol. Many psychiatrists reacted with cynicism, but the fact is Dr Huggins was successfully bringing hundreds of violent self-mutilating autistic/PDD individuals under control. Parents sought him out and soon psychiatrists at The Clarke Institute of Psychiatry (now CAMH) were sending Dr Huggins their most difficult cases. Dr Huggins used other medications also to bring mood cycling under control - he recognised that the majority of violent PDD patients appeared in his consulting rooms every Fall and spring! Julian too went through these noticeable cycles of violence, pacing and self-mutilation every Fall - it wasnt non-stop. In 1997 Janssen Pharmaceutica of Canada brought out Risperdal for treating schizophrenia at a certain dosage range, 3-10mg. Dr Huggins soon realised that low-dose Risperdal - well below the indication - was useful for bringing rage behaviours in autistic children under control, with the added advantage that the other combination of drugs could be dropped. Julian's drugs thus lowered from three to just 1mg Risperdal day, truly a 'wonder' drug if suitable to your child. Today, at age 28, Julian is still on 1mg risperdal day (1/2mg twice daily) and will soon go onPRN, "as needed". Dr Huggins' successful approach with Julian is dealt with in detail in Part Five of my book.

Q - How old is Julian today? Where is Julian is now? Does he still live at home?

A - Julian is now 28. He lives in a Kerry's Place group home and comes home every weekend (our choice) and for several weeks at Christmas and long weekends at Easter. We were on the waiting list for 15 years before getting accepted. He has been at the group home for nearly three years now. On leaving school at age 21 in 1997, I set Julian up in four jobs in the community - working in Port Credit library, and Brampton library, working one day a week at the Toy Shop in Square One Shopping Mall, etc. Kerry's Place kept up these jobs, providing a worker to accompany Julian. Julian also attends his old Senior School in Mississauga every Friday and hob-knobs with his old teachers whom he loves.

Q - If you had to give one piece of advice to parents of an autistic child, what would that be?

A - Insist on an early diagnosis as soon as you "suspect" something is wrong, even if your child is still a baby. Parents are very good at diagnosing their babies & there is so much knowledge around today not available in 1981. (Read my book to find out what NOT to do, & how NOT to be deceived by professionals!) Parents have an innate recognition of disturbing symptoms - they "know". Then start some sort of behavioural intervention right away even if it's only set up by yourself. There's no mystery about "ABA"! Anyone can do it, & its approaches & principles have been used & incorporated into other approaches, including old 'TMR' - for decades under other names! A lot of it is just common sense - so I definitely would NOT mortgage the house to pay for "treatment!" You have to be realistic & sensible & think of your other children too, & the quality of their lives. They also are entitled to have money & time spent on them, & full love & affection.

Q - When did you start writing the book? How long did it take you to complete it?

A - I began the book in 1997 and it took five years to write & then type up on the computer, revise, and prepare to submit to publishers - a long tedious process. It was written by hand in 2 coffee shops in Port Credit, and revised in McDonald's for 2 years every morning 6:30 AM - 8:30 AM, as that was the onl.y place I had some peace!

Q - Where can people get a copy of the book?

A - Because Lucky Press is only a small American publisher, it is not carried on the shelves of large stores like Chapters. If you do order through Chapters, tell them to look into Books In Print & give the ISBN number: 0-9760576-0-3.

If you are in the Toronto GTA area, you can get it at Parent Books, 201 Harbord Street , Toronto (just east of Bathurst, there's street parking outside). Tel: 416-537-8334. Toll Free: 1-800-209-9182.

On the internet through Amazon.com or directly from the publisher: www.luckypress.com/wheatley

Q - I understand you are presently promoting your book. What are the dates, times and places in Febrary and April?

A - You can ring Mississauga Central Library for the upcoming date (TBA) which will be some time in April when the weather warms up. Also Brampton Library, also in the spring TBA. I will be speaking at one of the Toronto libraries some time in the spring, too. Other speaking engagements are all professional, workshops & presentations on autism in Guelph & Kitchener, Midland/Penetang, the Drurie School For the Deaf, Milton, Burlington Association for the Mentally Handicapped in March before the March Break. Why not contact me around March/April at my e-mail address if you want to find out more details. orchard@ica.net.