F.E.A.T.of B.C. -- autism and discrimination in British Columbia, Canada

Speech to the B.C. - N.D.P.Women's Rights Committee, December 8th 1997 (by Beverley Sharp)

This speech was given bya courageous women -- a single mother -- raising a daughter handicappedby autism


Seven months ago, in May of this year, my littlegirl Allison who was nearly at her third birthday, was diagnosed with autism.I finally had an answer as to why Allison was completely non-verbal - exceptfor two sounds "oo" and "ahh" and it explained why Allisonwould not really make eye-contact, play with toys, nor play with her fiveyear old brother. It explained why she was such a quiet, different child.

After feeling utterly devastated with what seemed to be such a hopelessdiagnosis, I searched for an answer as to how I could help little Allison.F.E.A.T. of B.C. (Families for Early Autism Treatment) gave me that answer.Lovaas Applied Behaviour Analysis.

Lovaas A.B.A. is the only scientifically-based, medically-backed treatmentthat is proven effective.

What is it?

Lovaas A.B.A. treatment was developed by Dr. Ivar Lovaas from UCLA. Hebelieved that he could teach autistic children how to learn. How? By breakingdown a task into very small segments, by immediately reinforcing the "learning"of that segment, and when all of the segments of the task have been taught,the child can "learn" the tasks of appropriate language, of behaviour,and reasoning. Reinforcement can take the form of small pieces of candy,or tickles, hugs etc. We fade these reinforcers very quickly. For example,21 weeks ago when I started Allison's Home Treatment we used ju-jubes cutup into four's and tiny M & M's - now we have faded those reinforcersand we only need to use tickles and hugs!

Studies have shown that one-on-one, early, intensive treatment, preferablybefore the age of four years old works, e.g. Now I get to tell you aboutAllison's accomplishments. She can now approximate 12 words imitatively,and now says three words expressively "up-ah" for up, "dow"for down, and "op-ah" for open - with accompanied eye contact.She is learning to communicate!

What is the cost of this therapy? Well, to set up a Lovaas Program fora child, a Behaviourist, trained in Lovaas ABA is brought to the home toset up the Treatment Program and train the people that you have hired todo the therapy. Because there are no home-grown, Canadian trained Lovaas-typebehaviourists I had to fly a UCLA trained Behaviourist into Vancouver. Thethree-day session which the Lovaas Behaviourist conducted to evaluate Allison,and train the ten people I hired, cost approximately $5000 (after payingthat awfully high exchange rate on the American dollar). Next, to keep aHome Treatment program going, you spend about $10/hr per therapists for25-40 hours per week. My own program is approximately 110 hours per monthwhich costs me $1100/month. I augment the treatment on a daily basis whenI get home from work.

As an aside, it would be great if we could keep our behaviourist dollarsin Canada. To solve this problem, an organization called the Autism EducationSociety is trying to raise money for a Chair at UBC to teach Lovaas-ABA.There is nobody qualified in Canada to set up Lovaas-ABA programs.

Since my daughter's diagnosis, I have become one of the very sad statistics.I am one of the 75% of families which break up due to the stress of havinga Special Needs child. My husband and I split up two months after Allison'sdiagnosis and are presently negotiating a Separation Agreement. I am a fulltime worker, with a live in Nanny (it is impossible to find anyone to startwork at my home at 5:15 am). I have rented out part of my home, share mybathroom and kitchen facilities with two other people, cut my cable andam contemplating moving into my garage, and renting out my house to facilitatepaying for Allison's program.

I am doing a home treatment program myself so that I don't have to moveto Alberta, the only province in Canada which pays for this treatment. Iknow of three families who have moved to Alberta from BC just so that theirautistic children can obtain the only treatment that works.

It is deplorable to think that other children in this province whoseparents do not have the financial means to either start a home treatmentprogram, or move to Alberta, must have this treatment denied to their children.

There is no funding for this therapy. The province of B.C. will not payfor this treatment even though we have 63 licensed psychiatrists in theprovince of BC who endorse Lovaas-type ABA treatment as being medicallynecessary treatment. There is no other proven treatment. Every child isa citizen of this province and needs to be treated the same way that anyother child or adult in this province is treated when they require medicaltreatment. If there is treatment for a medical problem, they get it. Sowhy are autistic children being discriminated against by the province ofBC? Well I don't get it, 63 BC psychiatrists don't get it, and the other120 families in BC who have Lovaas Home Treatment programs for their autisticchildren, don't get it. It is wrong that this treatment is not covered.

Please help the autistic children of BC get the only scientifically-backed,medically-endorsed treatment available -- Lovaas-type Applied BehaviourAnalysis.

The money spent now on early intervention will save our autistic childrenfrom becoming expensive, institutionalized adults. Surely as citizens ofthis province, all autistic children deserve this only chance to functionat their highest possible potential. Lovaas ABA gives autistic childrenthat chance.

Thank you.


F.E.A.T. of B.C.

20641 - 46 Ave., Langley, B.C., V3A 3H8 Canada
Ph. (604)534-6956 Fax (604)534-9527

Director: Dr. S.K. Freeman