Parenting and Autism – A parents perspective on the service and the education systems
For parents with children on the spectrum navigating the support system and accessing the necessary supports can be a challenge. Image of a circular maze.
Immediately following ‘the diagnosis’ I informed the school and meetings were held, and magically there were answers and strategies available to help my child learn. Although this started off positively, I soon realized that the strategies the school had were from a list of ‘known fixes’ and they were going to use these, and only these, strategies. The truth is that the education system has been struggling for a while to get the right supports and staff in place for children with varying needs. This is no easy task and although the system is trying to make inclusive changes, there is still an enormous amount of work to be done. There was no ability for my child’s current school to individualize things to meet his needs. They had a small list of ‘things to try’. In very short order I began to realize that my work was not over, but rather, it was just beginning. I was going to have to educate myself on what resources and supports were available because the school was too overwhelmed to do this for me.
“ The truth is that the education system has been struggling for a while to get the right supports and staff in place for children with varying needs. ”
The concerns around funding and supports are very real. My son does not receive additional funding for an assistant to help him manage his days at school. He has received eight hours of paid therapy from the government. The ‘high functioning’ part of his label is very misleading. Autism is a spectrum, not a linear scale. Many misunderstand this and place my son on the high functioning (or ‘almost normal’) end of their linear scales. This is a very damaging misinterpretation that often leads to professionals beginning sentences with “He should know better because…”. This has led to my son being asked to stay home from school as a punishment because they educators have assumed ‘he knew better’ or that he was in control of himself and made ‘choices’ to misbehave. This misunderstanding of Autism as a spectrum is also why my son does not receive adequate governmental support. All services that my son has participated in have been at my family’s expense. Although my son is very affected in some areas of the autism spectrum, the high functioning label he was given often negates those needs and therefore we receive limited to no support for our child.
I continue to work full time as I attempt to provide the extra support the school requires of me to support my son. I spend a lot of my time at school meetings to develop strategies for my son, making suggestions about additional supports that should be employed, answering phone calls and emails about ‘why’ certain things are not working, and looking for supports outside the school system to assist my son with his education. I take time off work to be present on field trips because things that are new and out of routine (even fun things) are difficult for him. The school once asked me to be present as a parent volunteer a few times a week because my son needed extra support, and they did not have enough Educational Assistant (EAs) support available. This has, at times, placed an enormous stress on my employer to accommodate all the extra responsibilities I have to support my child within the education system. I am grateful that they have worked with me. Many of my friends within the ASD community have not been so lucky and have been let go from their jobs which adds emotional and financial burdens for their families.
The service system is a little easier to navigate as the primary focus for most agencies tends to be ‘individualized service’. Within the service stream, you can usually find a person or persons with the background and skill to teach to your child’s specific needs. The challenge within the service industry is usually the long waitlists and costs associated with these supports. It can be financially crippling to pay out of pocket for services, particularly when your child requires a lot of support in many areas of the autism spectrum. My own family has had made choices between spending money on house repairs or a family vacation and purchasing supports for my son. This is small in comparison to many friends I have within the ASD community. Many parents within the ASD community have sold their houses and moved back into their parent’s basements to purchase the necessary supports for their children. This is not to say that these dedicated professionals working for service agencies are not worth every penny spent. What I am trying to say is that the financial barriers to accessing supports are very real for many families across Ontario. This is another example of the enormous work that is required in order to make the service industry more accessible to all families.
“If knowledge is power, imagine the force and strength that having both the ministry of education and the ministry of social services working together could produce. Image the flow of supports that could be put in place for all children, of all ages, in all environments. ”
I will continue to advocate for my son and the individualized education he is entitled to. At times this seems an impossible task. The most difficult things for most parents are the battles. The battle for access, the battle for the services, the battle to teach people who your child is and what works best for them, the battle for knowledge, and the quiet battle a parent has with themselves wondering if they are doing everything they can and have left no stone unturned. My goal is to have my son fully supported in whatever capacity necessary. This goal will motivate me to continue to have these battles. My hope is that one day the education system and the service industry can somehow bridge the gap between them in order to provide the best support systems to families. In my humble opinion, a partnership between these two vast systems would definitely add the possibility of providing supports to all children, requiring all levels of supports. If knowledge is power, imagine the force and strength that having both the ministry of education and the ministry of social services working together could produce. Image the flow of supports that could be put in place for all children, of all ages, in all environments.
Sigh, maybe someday….