Shortly after my first born’s first birthday, I knew that he was different. It was not necessarily that he was not reaching his milestones, he could walk, said a few words, and was very affectionate. However, he did not engage in shared attention, he did not point, he had trouble following simple instructions. He didn’t always respond to his name, but did always respond to the sound of the playstation being switched on.
Because I have a background in child care I knew that something was not quite right. I ignored the well meaning comments of, “boys speak later than girls” and “all children develop differently.” Both of these comments are completely true, but I decided to do some research and consult with my doctor. By the time my son was 18 months old, it was quite clear to me that my baby had autism, or was autistic. I watched videos online, read all the diagnostic articles, and cried for 48 hours. I was mourning expectations for my son’s life that I didn’t realize I had.
My partner refused believe that it could be true, but I knew. While looking into my beautiful boy’s face, I realized that I did not love him any less. He was exactly the same boy that I adored with or without a diagnosis. This realisation changed everything for me, and I vowed to move forward and have an amazing life with my autistic son, just as I had always planned.
I met with an early words specialist in Ottawa, Ontario, Canada, who referred me to my family doctor, who referred me to a pediatrician specialising in autism. At the age of 22 months, my son was diagnosed with Autism Spectrum Disorder. We have gained an additional diagnosis of ADHD along the way, added identical twin boys to the family (fun fact- twins are MUCH less work than autism), moved to the UK, tried various forms of therapy (some that worked and some that didn’t), experienced the growing pains of figuring out where my bright boy fits in, both in school and in the world. Through it all there has always been love and laughter, my son continues to be an affectionate boy who brings our family so much joy. It wasn’t what I expected, but I cannot imagine my life without him.
The National Autistic Society Society defines autism as, “a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them.” It is estimated that 1 in 100 people in the UK have autism. It’s likely that you already know and love someone with autism. I hope that these 6 points may be helpful for friends and family members of people on the autism spectrum.
- Allow Grieving
No one expects their child to have a disability. Your life will be different than expected. Everyone grieves differently, there is no right or wrong way. I do think that this is an important step, and skipping it or ignoring your feelings could lead to problems and depression later on. I personally found that after grieving, I was able to see an autism diagnosis as a gift to help me understand my child and move forward.
- Stop Comparing
Roosevelt famously stated, “Comparison is the thief of joy.” I really took this to heart and it has made all the difference for me! Your family will have a different trajectory, as it should. For us, this means that we schedule more down time. We take into account the travel associated with activities. We don’t overschedule. We pick quality over quantity. We don’t care what other families are doing. We never compare. The relationships within our family have been strengthened, and our quality of life has improved in doing this, in simplifying. Find what works for you, and do that.
- Follow your Heart and your Child
Sometimes, the recommended therapy route for your child isn’t the correct choice. Autism is a lifelong disability, there is no cure, but there are many ways to help and improve. Our personal experience with IBI (intensive behaviour intervention- a form of ABA (applied behaviour analysis), was overwhelmingly negative. It took strength and resolve to pull our son out of the programme early and find what worked for him and then help stand up for our friends who were experiencing the same.
We have had a lot of success with child led “floor time” therapy, working with speech pathologists, working with excellent trained teachers (really these are my best friends), and with occupational therapists. Also, finding the correct school situation for your child can be daunting, as your child’s advocate, you know what is best. Trust yourself and your child. Some have found great success in mainstream school, with or without support, there are also fabulous special needs classes and schools out there, homeschooling has been the answer for some. Find what works for your child and your family!
- Never Stop Learning
This is so important! Read books about autism, watch shows and documentaries about autism, make friends with people and families touched by autism, read books and blogs written by people WITH autism. There is always more to learn. Make sure that what you are reading or watching is accredited, always check sources (this is extremely important, as there is a lot of misinformation or outdated information out there). I will list some of my favourite books below. Keep in mind as you are learning, that every instance of autism is different, as it is a spectrum, I would even say a non-linear spectrum. I do find it valuable to learn about all forms of autism, even when it presents differently than it might in my son.
- Be Flexible
Sometimes you plan on sitting and waiting for your food in a restaurant, but you get to take a scenic walk instead while your partner waits with your other two children. You always have a change of clothes in your bag for your child. Maybe you thought that you could stroll by a beach and not get wet… but soon everyone is swimming! Sometimes you are out at a park or party and things are going so well, that you stay longer than you had planned. Sometimes you leave early. Sometimes you order food that your autistic child normally loves, but today he wants your food. There are times when everyone needs an unplanned, late at night walk. Randomly early mornings can be lovely for quiet together times. There seems to be something surprising in every day, but it keeps life interesting.
- Embrace the Gifts
My son with autism does not judge. He is loving and hilarious. When he is happy, which is most of the time, he is the happiest person I have ever encountered. He helps our family to be authentic, to be ourselves, and gives us a level of understanding about the world and differences that we did not previously have. We have an added level of perspective and I am so very grateful for that. He is my joy and as autism is an integral part of who he is, autism has become my joy. Embrace the gifts of autism and you will have a richer life. I promise.
- Neurotribes: The Legacy of Autism and the Future of Neurodiversity – Steve Silberman
- The Autistic Brain – Temple Grandin
- The Reason I Jump – Naoki Higashida
- National Autistic Society
A Guest Blog from Danielle Deschenes
Danielle is a Canadian living the dream in the Cotswolds with her handsome husband and three adorable sons. She is a writer, painter, singer, musician, decorator, child herder, adventure seeker, autism mom, twin mom, and cheese connoisseur. In her free time she is a classical music teacher specialising in voice, piano, and theory. You can read all about her adventures on her blog you can also follow her on Instagram or on Facebook.
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