Monday, 18 July 2016

Eliminating Social Stigma of Autism in your Community

One of the first things my mother told me when I shared with her the news of my son's diagnosis was, "Don't tell anyone"

It struck me as an odd response. I thought about those words for some time. The more time I had to think about it, the more unusual and unsettling those words came to be. Why shouldn't I tell anyone? What kind of community, and more broadly, society, am I raising my child in if they are not willing to accept this big part of who he is? I started observing how others reacted in public when confronted with a person with autism. Most of the interactions were negative. It was then that I realized I needed to take a deeper look at the stigma in my com
munity towards autism and other developmental and cognitive differences (ODCD).

I am speaking from a personal standpoint, so I will be addressing the social stigma of Autism and ODCDs in my community. However, you may find this useful to apply in your own community if you find that stigma is prevalent. 

Stigma typically stems from fear of the unknown. The majority of people I have met have not been exposed or educated about autism and ODCDs. Their knowledge of autism is very limited, and they may have only heard of cases of autism that are more severe. They may have known about a person that has been diagnosed with autism but not given the appropriate management techniques, and therefore think it is a condition in which the child does not improve. They may have heard about ADHD in its most severe form, and think the child will not succeed as a functioning adult. Some may have only heard of autism from movies, like Rain Man.

The stigma of autism and ODCDs in the community is a cause for alarm. Because of the stigmatization of mental illnesses in our community, often those parents with children on the spectrum and ODCDs are left out of community functions. Not only do they feel left out because there are very limited, if any, resources to help them connect with others in the community that have similar struggles, but also they are afraid to let others know about their children's diagnosis in fear that their child will be ostracized, looked at and treated differently. What happens next is those families isolate themselves, in shame or fear; possibly both. This type of attitude towards ASD and ODCDs only feeds the cycle of stigma.

How do we eliminate Stigma?

The most effective way to eliminate stigma is education. Yes, it is as simple as that. Exposure and education. A simple way to educate is to expose. Moms of children with autism, do not be afraid to go to those functions you've always wanted to go to. Your presence is educational. Show them the magnificence of your child. Talk about all the skills your child has, talk about what they can do. Point out that autism and ODCDs are not disabilities.Explain to them what stimming is and the function it serves your child.  Do not reduce your child to a label by not taking him/her out because of it. If others ask, do not be afraid to share. If we show our children that we are proud of who they are, they will grow up proud as well. Always remember our spirited children are more than their labels.

Another important reason to go out into the community with your children is expose other parents with children who may be struggling to find answers. What stigma does is it keeps families from seeking a professional opinion and finding help for their children. There is an unfortunate negative association with therapy that I have noticed in our community that contributes to the stigma we are discussing here. To them, therapy means that something is wrong. That as parents, they have failed. This notion needs to be reversed because it is simply not true. Seeking a diagnosis and accessing help for yourself, your child and family is a sign that you are on the right track. By coming to the realization that professional help is needed, you are increasing the chances for success in the future. This is an idea that needs to be shared widely and applied in our community. So as a parent with a spirited child, your presence at a community event may spark a conversation with another parent who sees parallels between your child and theirs. Discussing your spirited child may encourage another family to find answers. You will have done a great service to that child who is navigating the system without a diagnosis, to finally access appropriate care and education.

When enough of us start educating our relatives and friends about our spirited children, there is hope for a change in the community. We will see special education workshops at local schools; teachers will receive better support on how to deal with spirited children if those children receive a proper diagnosis; we will see more support workers at events; Child care at our faith based centres sensitive to the differences in our children.Why? Because when we start showing our community that our children are who they are, considerations for our children will be put in place. These considerations can only be driven by us. And we will not be able to start them unless we start sharing our stories.

So mother, as a matter of fact. I do plan on telling everyone.

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