Long waits for autism services: parents

Allison Oliver and Keisha Mason don’t have much in common. The former resides in Pierrefonds, the latter in LaSalle; one works at the Montreal Children’s Hospital, the other doesn’t. The only thing these two share is where they send their kids to therapy 20 hours a week.

Oliver is the mother of two autistic children while Mason is the mother of one. Oliver had to wait a year for her eldest son, four and a half, to be diagnosed. And a year and three months for a letter stating they would receive full services plus three months extra for effective services. Her youngest waited 4 months for a diagnosis and remains on the waiting list after 11 months. Mason was able to get her son, Jason, therapy by the age of three and a half with persistent nagging at her work place. “You are your child’s advocate, you have to speak when they can’t,” said Mason. “It wasn’t like they put me (through for a diagnosis) the next day, I had to go back there everyday until they got sick of seeing me. If I sat back and took what the provincial government gave me, I would have waited a year (for a diagnosis).”

Oliver, on the other hand, had to go through the system for her eldest son to get diagnosed. “The waiting time was the biggest nightmare,” said Oliver. “We were waiting for a year to get diagnosed and by then (my husband and I) had a second child.” “We went to private services in the meantime, but it was getting expensive. We didn’t know for long how long we would have to pay, we didn’t get any answers; social services never called us back,” added Oliver.

The diagnosis is one of many steps a family must go through to receive Applied Behavioural Analysis (ABA) therapy – a scientifically proven but expensive service provided by the provincial government where autistic kids’ behaviours are worked on through repeated drills.

The first is the recognition of symptoms like odd behaviour patterns, low speech level and social skills, among other signs. Once a doctor refers the child for a diagnosis and the waiting period is over; then comes dealing with the reality and waiting for therapy to begin. “Even though the research (on autism) says it’s not the parents fault, it’s hard not to blame yourself first,” said Mason. “It was a relief and devastating at the same time,” said Oliver. “You want to be told nothing is wrong, that everything is alright. But at least we knew what was going on with him.”

Today, the Oliver’s and Mason’s receive ABA along with a program specifically made for their child at the West Montreal Readaptation Centre (WMRC) in Beaconsfield.

The Oliver kids were diagnosed with Pervasive Developmental Disorder Not Otherwise Specified (PDD NOS), a high functioning form in the Autism Spectrum Disorder. Their speech level was not age appropriate, and the eldest was anxious. Jason is non-verbal and is diagnosed to have severe autism.

At the WMRC, where many of the province’s autistic cases are treated, a staff of professionals accommodates to the specific needs of every child. “We have 96 kids, 96 programs and 96 workers,” said Katherine Moxness director of Professional Services and Quality of the WMRC. “My team will go and meet with the child; we’ll do a global assessment and see what can be offered.” “Every child needs 20 hours of ABA, that’s what the research shows to be the most affective (plus any other forms of therapy required). The child is (at the centre) everyday and learns kindergarten skills.”

But for every child with services there is at least one waiting, according to Moxness. Only when a child reaches the age of six and graduates from ABA therapy can a rotation occurs.

And while parents wait, “We compensate by offering ABA courses taught by professionals to parents so they can start training at home,” said Moxness. “It’s just too powerful to watch parents wait. We just have an enormous quantity of kids. It’s not from a lack of trying (from the health care system that waiting lists are so long).We serve as many as we can but there is a lack of funding.”

The Oliver’s and Mason’s are currently happy with the services they are receiving. Both of the Oliver kids now speak at an age appropriate level, and are less anxious. Jason can now speak a few words, and shows more independence.

Once ABA therapy stops and kids enter school, the WMRC offers several other services such as anger management, respite and more social skills groups, but at reduced hours. “We stay implicated, we see how they are doing in school,” said Moxness. “The ages between two and seven are the best time for ABA. Six years old was chosen as the cut off year because it coincides with kids entering schools. The decision was more administrative than clinical.”

Nevertheless, the Oliver’s and Mason’s are concerned about their son’s future. “The cut off (from ABA) at six years old is ridiculous,” said Mason. “ABA costs $100 to $150 per hour, right now I can’t afford it, so I’m taking full advantage.”