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.

Our Story

Some parents are told their child has challenges during pregnancy. Others are met with challenges when their child is born. And some challenges slowly creep up in time, while others are hit with a sudden event that change their family's lives entirely.

Our story is one about a slow surfacing of challenges over months, and then years. Our SC was born full term. It was a normal pregnancy, and an uncomplicated delivery. He was a healthy baby. He was a mellow and happy baby for the first twelve months of his life. He hit his milestones in time and all seemed okay. In his toddler years, he quickly picked up on all of his alphabet, colours, shapes, numbers, with ease.  As a first time mom, I boasted about how easy motherhood is and admired my bright boy's curiosity. I was vigilant in the first years to watch for red flags like eye contact, interest in faces, smiles, and communication attempts. Since it was all there, I thought we were in the 'clear'. I thought we were okay.

Then something changed. At around two years old, we noticed fixations. While other children played in the playground and within acceptable parameters, He would wander off into the parking lot. He would lay down and look at the wheels of strollers in the mall, at home, in the stores. He would line up his toy cars. He became very interested in all types of vehicles. He was more interested in the cars in the parking lot of the playground than playing at the structures. Well meaning friends and relatives brushed off our concerns saying, "Some boys just love cars!"

Although he had a large vocabulary, all was lost in articulation. I was the only person that could understand him. This was our first reason to reach out to early intervention. The speech and language assessment concluded that he had an expressive and receptive language delay. After the block of sessions, the speech and language pathologist (SLP) had reason to think there could be something else going on. I had already asked for a referral to a developmental pediatrician at this point.

At age three, he was unofficially diagnosed with ADHD. Three is too young for a formal diagnosis, so we were told to wait and try some behaviour modification therapy in the mean time. I still was not satisfied so I went for a second opinion. The second developmental pediatrician said that my puzzle child has ADHD, and started listing of medications. He was four. She dismissed our concerns about autism and did not do a formal ADOS assessment. She said, "He could have autism, but let's focus on ADHD first". Then off I went for a third opinion.

We were referred to a team of specialists at a research hospital. We had faith that they were better equipped to see the full picture of our child's challenges. Having already been diagnosed with ADHD from the previous pediatricians, they took a closer look at our concerns about autism. After the ADOS assessment, he was officially diagnosed with high functioning autism at age five. What's interesting is how irregular his responses were. There were times when he met the required tasks with little effort, and others where he did not attempt. His pediatrician noted that she understands why the other physicians did not look into diagnosing him; he did not fit the criteria as easily as other children do. Our child was a puzzle.

Although I knew in my heart that he will be diagnosed with autism at some point, the actual diagnosis hit me like a ton of bricks. I left the office with feelings of both relief and a heavy heart. Relief that I finally have an answer, and a heavy heart of what this means for my son's future. My eyes welled up with tears the moment I stepped in my car. My eyes did not dry until I got home to see him again. I had to be strong for him.

It has been a year since his diagnoses. We learned so much in that year and continue to learn every day. Some days are painfully challenging, and other days are fine.

The thing about this journey is it teaches everyone that it touches. I'm still learning patience, I'm learning to find comfort in our new norm. 

Introduction

Welcome to The Spirited, a special needs parents' resource website.

Parenthood is already one of the most tasking jobs one can have. Physically, emotionally, and mentally. Parenting a spirited child can be even more tasking. Many parents suffer in silence as they try their all to give their child the best possible outcome. Often we forget ourselves in the process of giving everything. The feelings of isolation, depression, inadequacy, and the on going question, "could I be doing more?" are familiar to us.

This website was created as a space to reach out to those who feel the burden of parenting a spirited child. We will regularly post advice, resources, tips and stories about parenting spirited children. Our aim is to provide an online community for parents of spirited children as well as be an educational platform.

What is a Spirited Child?

A spirited child in this context is defined as a child with special needs. Children can be spirited in very different ways. My spirited child (SC) has Autism Spectrum Disorder (ASD) and Attention Deficit Hyperactivity Disorder (ADHD). Spirited children think differently, act differently, and see differently. They are not "disabled", they are not less. They often possess a gift or an impressive skill set. In this website you will find posts about defining those strengths in your child and many other helpful tips.

What will I find here?

• Educational resources
• How to navigate the system after a diagnosis
• Anonymous open letter segments 
• Behaviour management techniques
• Book reviews
• Current research 
• and much more!