Conducted by Franca Pastro, BA, ASAT Board Member and Parent
Franca: How about we begin with you sharing with us a little bit about your daughter, Allison
Beverley: Allison was diagnosed with autism at two years and nine months and just turned 22 this summer. Allison loves her chubby pet pug dog, Henry, and also enjoys some of the “girly” things in life, thanks to our behaviour consultant (BC) who encouraged the many applied behaviour analysis (ABA) team members to “bring what YOU like to do to Allison’s table.” Allison enjoys getting her nails done, whether this is at a salon or at home. This skill took some time to develop. We had to introduce Allison to this grooming skill slowly and methodically, so that she would keep her hands still while allowing a behaviour interventionist (BI) or myself to trim her nails. Next, my lovely therapy team would do their own nails with pretty appliques before arriving for a shift. They would ask Allison, “Would you like to work for a butterfly on your thumb?” This is how “getting your nails done” started! We have generalized this reinforcer to “What colour nail polish would you like to get at the store?” Fortunately, Superstore now sells small bottles of many coloured nail polishes for about $4 each – a well priced treat/reinforcer for Allison.
Because Allison is a “foodie” by nature, she likes food preparation and cooking. Our BC, Shelley Davis, instructed us to expand this skill by adding a discriminatory component, such as “Open the fridge, please. What do we need to buy at the store?” Allison generates a list, the BI writes it down, then Allison copies the list. Next, there is a trip to Safeway where Allison must find all of the items on her list. At first, we had to use discriminating language (e.g. “Is it a good apple?”), as initially Allison would just put the six listed apples into a bag without checking their quality. We expanded this drill to all of the vegetables and fruits.
Another favourite of Allison’s is shopping for clothes and shoes. She has a definite liking for bright colours and flowers on her clothes! She is allowed to pick clothing items and this is a real pleasure for her. With shoes, Allison likes sparkle and bows. Really amazing when I remember that she never used to make choices of any kind when we started her ABA program at the age of three.
Going to the library is an outing that Allison enjoys as well. She chooses books that have pictures of animals, dinosaurs and food dishes. She will choose a book and sit turning the pages for up to 20 minutes. This is an outing that is quiet, appropriate and enjoyable for everyone.
Last but not least, Allison loves going to Lush. She will pick out one bath bomb and the staff at the store know Allison and enjoy her visits. This store is a huge reinforcer for Allison. She will often say that she would like to work for Lush as a reward.
Allison is now a higher skilled but still very impaired young lady with autism. ABA and her talented, committed BC and therapy team have resulted in Allison acquiring language, self help and some social skills. I am very proud of Allison.
Franca: It sounds like Allison is really enjoying being a young lady! Now, let’s talk about Allison’s work experiences. I’m assuming she started while still in school. Did any of her job placements continue after she graduated from High School?
Beverley: Allison started her work experiences in elementary school. My BC had us work on vocational skills at home first: printing her name (to-sign in and out for her job), washing hands (a requirement prior to starting a shift), sweeping the floors, stuffing envelopes, washing dishes in the kitchen, wiping down chalkboards, and doing routine tasks which helped clean up the therapy area. These skills transferred to Allison helping in the school office with envelopes, in the staff room doing dishes, wiping down tables, putting chairs neatly around tables, and in the classroom where Allison had a daily job at the end of the day washing chalkboards and cleaning brushes. She was very proud of these jobs and her special education assistant, who was also a BI in our home therapy team, was instrumental in prompting Allison through these tasks.
In High School, Allison did work experiences at London Drugs and Old Navy. At London Drugs, she had to sign in and report to the site supervisor. Next, she would go to the Returns bin and was required to “put with same” to sort the items returned by customers. At Old Navy, the folding program was put into good use! Allison was required to fold all types of clothing and sort by sizes. We worked on these skills at home prior to starting at the store.
None of the job placements continued after High School. Both employers cited insurance issues with Allison continuing as a volunteer, and they also wanted to provide the volunteer positions to students who were still in High School.
Franca: You mentioned that Allison has a job volunteering at a local non-profit organization. Can you share how Allison managed to get this position and what are some of her duties?
Beverley: One of Allison’s BIs, Marella, would often take Allison to her home. Allison met Marella’s entire family and occasionally was invited to share the family meal with them together. Marella’s mother, Elizabeth, is the Director of Quest Food Exchange*. She commented that Allison’s abilities were remarkable and thought that volunteering at Quest would be a good fit. This is how Allison began as a volunteer at Quest Food Exchange. As soon as Allison arrives at Quest, she will unpromptedly put on her apron (she needs help to tie the final loop of the bow when tying the apron from the back, we are working on this) and signs in on the volunteer sheet. Her chores at Quest include: stocking the shelves (“put with same” drill really makes sense when you see your child use this skill – wonderful!); sweeping the floor; marking prices on items with a price gun; and deconstructing boxes, readying them for the cardboard compacter.
Franca: How do you think Allison feels about her job?
Beverley: It is clear that Allison looks forward to working at Quest. She will start the morning with excited remarks, such as, “I go to Quest to work today!” Twice now, when driving and pulling up to Quest, unprompted Allison has hurriedly gotten out of the car, gone into Quest, said a quick hello to her co-worker and then headed to the staff room. Also, her decisions to wear something pretty, do her hair, and put a special beret in her hair indicate a desire to look nice for work. Allison smiles when asked about her work at Quest. She says, “I like to work at Quest.”
Franca: What supports and/or strategies (if any) are in place for Allison in her work environment?
Beverley: The staff at Quest asked me questions about how best to work with Allison. Also, the staff learned by observing Allison with her BIs and with myself which tasks she can do and how to best set them up. The ABA strategies in place are task analysis, prompt fading, natural reinforcement and her DRL (Differential Reinforcement of Lower Rates of Behaviour) board implemented by her BI only.
When frustrated with a task, Allison will mutter under her breath or swear quietly. This behaviour has been targeted for many years and we now see this behaviour infrequently. The staff at Quest never observed this behaviour. Allison’s reinforcement at the end of her shift is that she gets to shop for her household. She is allowed to purchase five items. She enjoys shopping at Quest very much.
Franca: Looking back, did you ever expect Allison to be able to consider employment?
Beverley: This is a difficult question. When Allison was diagnosed, a social worker told me and my then-husband, “Children like Allison will not be able to stay home for longer than a couple of more years because the behaviours would become too difficult to manage. There is a place for children like Allison.” No, I did not foresee that Allison would be able to be employed. My opinion changed after hiring a BC and seeing Allison’s acquisition of skills and improvement in her behaviours. We have not looked back since.
Franca: Why is employment important for Allison? Do you see value in Allison’s employment even though it is a volunteer as opposed to a paid position?
Beverley: Any kind of employment is important for Allison because it gives her opportunities for socialization with others, allows her to use her skills in another environment, enables her to discriminate unfamiliar items, and exposes her to new life experiences which promote maturity. It is wonderful.
Franca: As all this has unfolded over the years, how has it impacted your life personally and as a family?
Beverley: ABA Treatment was not funded at all in Canada when Allison was diagnosed in 1997. When I discovered ABA treatment, I was thrilled on one hand – but gut-wrenched on the other to find out that it was not covered by Medicare. My at-the-time husband stated he was not willing to spend his retirement savings on his little girl’s treatment. He was prepared to let her be. This was the end of our relationship. I went on to empty every bank account I owned, cash in my retirement savings, pawn my valuables, take on extra overtime and rent out rooms in my house. I resorted to sleeping on my living room floor. This enabled me to pay for Allison’s treatment, and do the right thing for my child. I was honoured to be part of a small group of parents, spearheaded by Dr. Sabrina Freeman, who took the Canadian government to court. The landmark Auton decision made a difference for every child with autism in Canada. ABA was recognized as being medically necessary and the gold standard treatment for autism. I am one of the founding members of the Families for Early Autism Treatment (FEAT) of British Columbia and am still one of its directors. I am forever grateful to Dr. Freeman.
There is a Chinese proverb: “A good parent is as happy as their least happy child.” When my child was locked in her lonely world of autism, non-verbal, without any self-help skills, fecal smearing, night-waking, non-responsive to any family member or even to her own name, it was a very low point for me. When I started her ABA program by myself, without the support of any family member, I was hopeful. Allison was mute for four years, only acquiring language after our BC designed specific programs for her. After the first month of treatment, Allison spoke her first word – it was “Mom.” Allison is now a happy young woman with many self help skills and some language skills, able to express her interests, go to a movie, order a drink at Starbucks, and shop for food items from her list. She is responsible for several household chores. While Allison has many skills, she is still a very impaired young woman who requires that a BI be with her to prompt her through tasks and to manage behaviours when required.
Having a child with autism is life-changing. I discovered who my real friends were, as many friends couldn’t take the news of my daughter’s diagnosis and my husband’s departure. Interesting observation of human behaviour that some people just want to know you when the “going is good” and not when “the going gets rough.” I also learned how to do most of my own carpentry, yard and house maintenance. Many neighbours donated their used tools to me after their husbands received new ones for Father’s Day. I can fix a toilet, a faucet, do drywall and build cement walls. These are skills which came by necessity as I could not afford a work crew to do this maintenance.
I have a son, a big brother to Allison, Jackson who is 24 years old. He loves his sister, and has taken a lot of ABA training to allow for understanding and appropriate interaction with her. He is proud of her and treats her to special outings. He often will accompany Allison with her BI on a community outing such as going to a movie, going out for pizza, or attending a community day event. At every consult, I schedule special one-on-one time for Jackson to spend with our BC. He can ask any question and get factual, honest answers. One concern of Jackson’s is, “Am I going to have to look after Allison after you are gone, Mom?” This is an honest question. I don’t yet have an answer for him, but I’ve hired a good lawyer with the view to making sure that Allison gets what she’s entitled to.
Franca: Do you have any advice for other parents of young adults with autism who are thinking about their future? What would you do differently if you were restarting the process?
Beverley: My first advice to parents is to give your child the medically necessary treatment for autism, ABA, immediately upon diagnosis. Consistency is key, all family members of the household must be trained and informed about prompt levels and behaviour expectations when the BI’s shifts are over. When considering making a future for your young adult with autism, I recommend for parents to fill days with meaningful daily living skills. Cleaning, meal preparation, laundry and yard work are all pieces of the daily living skills puzzle. Dr. Lovaas was clear that his direction was for a child with autism to become functional in a family setting, in their home. Next, use your BC’s and your BIs’ observations and expertise to help set goals for your young adult. As much as you know your own child, be open to advice and direction from those who deeply care for your child. Another piece of advice is to not believe in the empty words of bureaucrats. Unless a statement is in writing, such as funding for job skills or housing, forge ahead with your own plans whilst keeping the lines of communication open with government agencies that may be able to help you with your child down the road. My child is a Canadian citizen worthy of treatment and of a life outside of her childhood home.
I am not sure I would do very much differently if I were restarting the process. We are exactly where we are meant to be. The road has been long and bumpy, but we never fell off the road. We are thankful for the good people that have crossed our path.
Franca: It’s been a real pleasure talking with you, Beverley.
Beverley Sharpe lives with her children, Allison and Jackson, in West Vancouver, BC, Canada
*Quest Food Exchange is a not-for-profit organization that provides access to a variety of affordable foods to individuals facing food security challenges in British Columbia, Canada.
Citation for this article:
Pastro, F. (2016). Interview with Beverley Sharpe, Mother of Allison. Science in Autism Treatment, 13(3), 21-25.