I have “autism awareness” in my header on the front page of this blog, because autism awareness and understanding is key to the development of sufficient and appropriate services in support of autism. Happy face! While currently autism awareness is growing, the growth of services for the autistic individuals in our world is still lagging badly, certainly in Ontario. Here are my ideas about services that I would like to see to help my family, and maybe yours?
Daily Autism Specific Programming
For my son to be successful in an “integrated” community environment outside an institution, he needs to have a very structured day. He needs that very structured day, EVERY day, not just Monday to Friday. And there are NO PA DAYS! It is just like parenthood! For N, the weekend days (or so-called days off) are not a cause for celebration, nor are they a relaxing reward. Days off are confusing days that must be somehow endured. He has difficulty coping on the weekends when he is not in school and the daily activities are not predictable or according to a schedule. I know this is not unique to N, in fact many autisic kids love predictability.
The reason for the need for structure? N and many autistic kids have problems processing sensory inputs. In the case of N we are not sure exactly what those sensory processing problems are, but we know he has them. It might be that he cannot process sound and sight simultaneously. Or maybe it is just auditory processing in itself that is difficult for him. We don’t know for sure. And he cannot tell us. At any rate, something that is predictable, something that N has seen before, relies less on sensory processing and is therefore appealing and desireable.
What we DO know is that when he IS having problems processing, he gets very stressed out, and he reacts either by negative behaviours or “stimming” or both. The negative behaviours are his non-verbal way of communicating: “I am having trouble coping“. The stims are his attempt to block out sensory inputs that are causing him to have difficulty. For N, his work week happens on the weekends
A regular predictable schedule of structured activites in a familiar environment is what makes N’s life easier, what makes him happy and successful. We might think it boring, we might think it uncompassionate, to live daily by a predictable schedule. But then again, you and I do not have autism. Most of us do not have trouble coordinating our vision and hearing, we do not struggle to make some kind of sense of our environment.
In my opinion, the regular school system does not provide enough structure for my child. Clearly there are the unwelcome weekend breaks. But in addition the individual days of the school week are not sufficiently long. N’s day is 8:30 to 3:15pm each day. Ideally he would be covered 9-5 or even 8-6.
The service option that I would like to see is autism specific programming 7 days per week for a minimum hour commitment of 9-5. Some academics, some like skills, depending on the abilities and interests of the autisitic child. Too expensive? Not necessarily. Not if there is consideration for opportunities for group activities as well as IBI or ABA. Not if there is consideration of the current situation, where an individual TA is assigned to a child so that he/she can sit in the classroom without comprehending, nor injuring, nor interfering with the other children.
I believe that a possible workaround that would address both educational and respite goals would be to have educationally based structured programming 7 days a week, 8 hours per day. That would meet N’s needs for daily structure, my need to work, and the family need for some normal time on the weekend. It would take the place of the regular school, where he currently sits in a classroom with an EA unable to participate in what is going on. It would make it easier for us to have him part of our family, for a longer period of time. We would have him at home in the evenings for his love. Seven day programming would not have to be one-to-one all of the time: there could be many opportunities for group activities. This would suit kids of all ages, even adults. Would this be too great a cost? Relative to what? The cost of full day one-to-one support in a school, of serving an individual in a group home, must be substantially greater. What about the huge wait lists for group homes? In our region it is currently a 20 year wait for a spot in a group home. This kind of service would make that wait much easier on individuals, their families, and even possibly enable some of those individuals to remain with their families.
Ideally there would be respite services provided by the same programming source, perhaps on a revolving basis for and subsidized by participating families. That would make respite easier on my son and on our family, knowing that he is in a familiar environment. .
I am not sure that it is possible to change N all that much. He is simply too autistic. He cannot be measured by the same standards of progress that we might like to see in our kids. Cannot the spending of public money be justified not with with standards that apply to the public but with standards that apply to them? Because there is no judging of how well a fish can climb a tree! Can we not just try to make their lives as comfortable as possible without any grander vision of progress? Is that not worthy of support, just like it is for seniors or physical handicaps?
Currently we have thousands of families in Ontario coping with situations that are barely sustainable. They may have kids or adults that are not just challenging, but aggressive. Nobody wants to publicize their home life, particularly when it could be or may have already been construed as parental incompetance. There is respite available: affordable respite is hard to find, and otherwise it can be expensive. Many families go into crisis at some point because they simply cannot do it anymore. Then the individual is put into a home and it is a shock for him or her. It does not have to be that way.
There is a cost to inadequate services. There is the opportunity cost of unpaid taxes by the family member that cannot work due to the physical reality of 24/7 caregiving. There is a medical cost for the stress of caregiving 24/7. There is a cost for crisis management.
Would love to hear from the autism community – do you think 8 hr/day 7 day/week services would make a big or little difference for your family?