4 Ways to Participate During World Autism Month

Today’s guest blogger is Heather McCutcheon, an advocate for autism acceptance, understanding, and inclusion. Her now 4-year-old daughter Bella was diagnosed with autism at age two. Since then, she has devoted much of her time researching and learning about ASD so she can be the best caregiver possible to her daughter. She has another daughter, a 1-year-old, and keeps her on her toes, as toddlers tend to do. Heather and her husband are raising their daughters in Central Florida, which means they get to frequently visit local theme parks (their favorites are Disney World and SeaWorld, of course!) as well as enjoy fun outdoor activities together such as boating, hiking, and going to the beach. Heather spends most of her days taking care of their two beautiful children and driving to school, therapies, church activities, ballet class, soccer practice, and other activities. Heather has a degree in Health and Biomedical Sciences, and she works part time at a local hospital where she has the opportunity to share her heart and care for people outside of her own family as well. Please join me in learning from her family’s story, her firsthand wisdom, and the knowledge she has gained from years within the community.

Happy April! We have survived the tricks and pranks of April Fools Day, and I’m writing this on April 2nd, World Autism Day. This day was sanctioned by the United Nations as an official day of observance for worldwide autism awareness and acceptance in 2007. The entire month of April, in fact, is recognized as World Autism Month among most advocacy groups.

Believe it or not, within the world of autism advocacy, there is lot of divisiveness and disagreement about exactly how one should go about raising awareness. Some people are against using the word awareness at all, and prefer to replace it with acceptance. Personally, I use a combination of both terms. Some will “light it up blue,” but because that campaign is associated with Autism Speaks, an organization that many advocates for autism and actual autistic individuals have spoken out against for a number of reasons. Some people go #redinstead, or will represent support by donning a ribbon with a multi-colored puzzle piece pattern. Again, nothing is universal and therefore some advocates reject the puzzle piece symbol as well, particularly autistic adults, citing reasons that it portrays autism as something that only affects children, and that autistic individuals are people, not puzzles. These groups often use an infinity symbol in place of the puzzle piece. There is even a debate on terminology- is it person with autism, or autistic? Professionals trained to work with children on the spectrum (therapists, educators, etc.) are taught to use person-first language, while many adults on the spectrum prefer identity-first language (i.e., autistic). On social media, the hashtag #actuallyautistic is used frequently by adults on the spectrum. The debate really boils down this:  there are some who view autism spectrum disorder as just that- a disorder. Therefore, it is implied that autism is something wrong, that needs to be fixed. The opposing view of that is the idea of neurodiversity. That autistic people just have a difference in the way their minds work, but are not broken. The thought is that autism is simply a normal, natural variance in the human genome. Steve Silberman, author of the New York Times bestselling book Neurotribes – The Legacy of Autism and the Future of Neurodiversity, explains it this way: “the concept of neurodiversity: the notion that conditions like autism, dyslexia, and attention-deficit/hyperactivity disorder (ADHD) should be regarded as naturally occurring cognitive variations with distinctive strengths that have contributed to the evolution of technology and culture rather than mere checklists of deficits and dysfunctions.”

Regardless of the differences in the world of autism advocacy, the bottom line for most is to educate more people about autism, in order to make the world a more accommodating place for autistic individuals. The awareness aspect should focus on speaking out against discrimination against individuals with autism. The goal should be about promoting a kinder and more accepting outlook on autism. As an advocate myself, my goals are to promote understanding of what autism truly is, and to encourage inclusion for individuals on the autism spectrum. For example, far too often you will see a news story of a teacher or aide who has physically mistreated an autistic student. If you see these stories on social media and read the comment section, time and again commenters will say something to the effect of “a child like that shouldn’t be in a public school anyway, they are a distraction to all the normal kids!” Seriously, I see comments of this nature so often. Proof that we are nowhere near a place of acceptance and inclusion. Another example, is that an unfortunate attribute of children on the spectrum is the tendency to wander off. This trait combined with a lack of fear, and an attraction to water often results in tragic endings of accidental drowning deaths. These devastating stories are on the news far too often. Leave it to the keyboard warriors though, to comment about these tragedies that they have more to do with neglectful parenting than anything. The people who say this clearly have no real knowledge of what autism is and how it affects children. Again, a clear indication that we have a long way to go to help educate the public.

I’d love to take this opportunity to share some ways you can help.

1. Educate yourself! Start by watching Temple Grandin’s TedTalk. Then, choose a book about autism to read this month. Here are a few book recommendations: The Reason I Jump by Naomi Higashida. Uniquely Human: A Different Way of Seeing Autism by Barry M. Prizant, Ph.D. Odd Girl Out: My Extraordinary Autistic Life by Laura James.    Neurotribes by Steve Silberman. Thinking in Pictures by Temple Grandin, Ph.D, and The Autistic Brain, also authored by Dr. Grandin. Another favorite of mine is Life, Animated by Ron Suskind. Life, Animated was also made into a documentary of the same name that is available on DVD through Amazon and is worth the watch!

2. Educate your children. Teach them young about differences. Teach them about inclusion. Encourage them to be kind to the boy who doesn’t communicate verbally, or the little girl who flaps her hands and never makes eye contact. Teach them why that little girl has those behaviors that are a bit unusual. Teach them to be friends with those children. Take them to those kids’ birthday parties. If you have toddler or preschool aged children, I would suggest introducing your child to the Sesame Street character, Julia. Sesame Street recently developed a wonderful initiative to teach children about autism. There are great tools at autism.sesamestreet.org to help parents teach their children about autism. Another thing I recommend is getting the children’s book The Girl Who Thought in Pictures by Julia Finley Mosca. It is the biographical real life story of Dr. Temple Grandin, renowned animal scientist, livestock consultant, college professor, author, and autism advocate. Grandin herself has autism, and this fun little book explains a bit about her childhood on the spectrum.

3. Get involved. Take action by supporting programs that provide resources to autistic individuals. Learn about the programs or organizations in your local area and find out ways you can help. There are resources that help parents of newly diagnosed children navigate their way through the foreign territory of therapies and IEPs. There are scholarship programs designed to help students with special needs attend private schools that may be a better fit for their needs. There are camps for children with special needs. There are organizations who help with job placement for autistic adults. The list goes on, and I encourage you to research the programs like these in your area and reach out to them to learn how you can help. 

4. Don’t jump to conclusions. 1 in 59 children are diagnosed with autism. If you speak to a child and the child doesn’t respond or make eye contact, don’t assume the child is being rude. Stop to consider that they may be autistic. The same can hold true for adults on the spectrum too. If you see an uncontrollable child throw a tantrum in public, don’t assume the child is a spoiled brat. You may be witnessing an actual sensory meltdown happening to someone with autism. If you don’t like seeing children with screens in front of their face in public places, consider they may have sensory issues, and the only way they can tolerate being in a restaurant or grocery store at all is by using a phone or tablet as a distraction from the loud noises, the bright fluorescent lighting, the crowds of people, and other factors that can lead to sensory overload. Please try not to judge children and parents in similar scenarios to these, as you simply don’t know their story. Autism is very complex. I could never even begin to break down the misconceptions about ASD that I have encountered in just four years of parenting an autistic child. The bottom line is, instead of passing judgment and making assumptions, learn more about autism and always be kind.

As an advocate for autism acceptance and a mother of an amazing autistic child, my main goal is to make the world a better place for my daughter to grow up in. Autism is a spectrum, meaning every person on that spectrum will be unique. This is not a one-size-fits-all diagnosis, and it can be really difficult to navigate in the early years after a diagnosis is made. Doctors don’t hand you a guidebook when they diagnose your child with ASD, and parents are left navigating their way through uncharted territory. I quickly realized, the best tour guide of this journey would be our daughter. The best way to learn about autism is to know and love someone on the spectrum. My 4-year-old child’s brain is fascinating. She doesn’t always respond when people speak to her. She doesn’t typically look people in the eyes. But that doesn’t mean she isn’t listening. Bella has some seriously impressive memorization skills. She memorizes books after we read them to her only two or three times. She memorizes entire movies, every word! She has amazing talents and I’m excited to discover more of her strengths and abilities as she grows. The reality is that despite these strengths, people will tend to see her differences as weaknesses, and those will overshadow everything else. I don’t want her to be isolated because she is different. I want the world to recognize her differences as something to celebrate and embrace. I hope Autism Awareness and Acceptance Month will continue to educate people about acceptance and inclusion. In Temple Grandin’s TedTalk on the topic, she summarized it best when she said “The world needs all kinds of minds.”

References

Callahan, M. (2018, July 12). ‘Autistic person’ or ‘person with autism’: Is there a right way to identify people? Retrieved from https://news.northeastern.edu/2018/07/12/unpacking-the-debate-over-person-first-vs-identity-first-language-in-the-autism-community/

Robison, J. E. (2013, October 7). What is Neurodiversity? Retrieved from https://www.psychologytoday.com/us/blog/my-life-aspergers/201310/what-is-neurodiversity

Silberman, S. (2015). Neurotribes. St Leonards: ALLEN & UNWIN.

United Nations, main body, General Assembly. (2007, December 18). Retrieved from https://www.un.org/en/ga/