Having a child on the autism spectrum can be a very insular and isolating experience. I spend so much time spilling my own thoughts and experiences as a mom that I sometimes wonder if I am the only one thinking what I'm thinking, feeling what I'm feeling.
How does autism shape the lives of other families out there? I wanted to know.
The answers parents gave were as different as their children, as vast and as varied as the spectrum itself. And yet they shared a refreshing honesty, a pure love for their kids - from 3 through 23 - and a desire to see them become their best selves.
In some strange way, I see myself and my own family reflected in all of these moms and dads. Their daily frustrations and fears, their intense joy and sadness.
Hearing from others made me realize that although autism can sometimes feel like a lonely place, none of us is truly alone. Far from it.
If you could turn back the clock and talk to yourself on the day your child was diagnosed, what would you say?
D. ~ 3yo son
I don't know. It's only been about 6 weeks!
J. ~ 18yo son
We were actually very relieved when we got the diagnosis as it meant that we weren't bad parents - there was a real reason for him doing the things he did. I would tell us that this road is going to be paved with many twists and turns, highs and lows, and no matter what, he will be able to achieve whatever he sets out to do. It may take him longer than others, but with determination, hard work, continued support, he will grow and learn and realize his goals.
N. ~ 7yo daughter
I would tell myself not to let go of all the special things my child did. I felt like diagnosis was a relief in some ways but also a darkness that overshadowed the pride I took in my daughter. it took a long time for me to start enjoying her quirks again and taking pride in the things she was good at.
C. ~ 11yo son
Don't panic. He is just as difficult as his sister. No, wait. His sister is more troublesome!
L. ~ 18yo son
He was diagnosed at 17. I had known for years. No one would agree with me. I finally felt vindicated. However it was too late to help my son.
K. ~ 6yo son
Take a breath, stop and pat yourself on the back. No really, sit for a moment and acknowledge how hard you worked to get here. Good job, Mama! You did good! Just really let it all sink in.
S. ~ 13yo son
Denial, followed by questioning what it means and who else has it. A Google search of 'Famous People with ASD' was invigorating. Our son has a gift....try to not ruin him!
N. ~ 13yo son
Where do I look for help and when should I start looking?
F. ~ 7yo son
Everything will be OK.
S. ~ 12yo son
I would say don't listen to people who don't know what they're talking about. Trust the experts and trust your guts, but tell your sister whose friend's cousin's son had autism and was cured by a gluten-free diet and magic rocks to f*** off.
T. ~ 23yo daughter
I did feel vindicated because it explains all her previous behaviours (meltdowns, which are still happening). Probably should have had the doctor who diagnosed to talk to my other children to explain how this affects them.
Anything you’d do differently?
J. ~ 18yo son
I wish I would have started a journal about his journey back when we noticed that he was different from other kids. That journal would be a great reminder for him of just how far he has come and how many challenges he has overcome.
N. ~ 7yo daughter
I would not stress so much. I would adopt the "que sera sera" attitude sooner.
C. ~ 11yo son
I will trust my instinct about my own children a bit more, instead of trying to "learn from others". Every child and every mom is different and how they [parent] is also different.
K. ~ 6yo son
I would have walked out of doctor's offices. Just walked out the second they started with their condescending and dismissive tone. If I had had more energy, I would have reported some of them to the College of Physicians.
N. ~ 13yo son
Push the school board earlier.
S. ~ 13yo son
I would not have been as patient in terms of accessing services. I would have been more pushy about finding out what he really needed/would work for him and pursue that vigorously instead of trying a lot of the things suggested that just weren't appropriate.
F. ~ 7yo son
Hire a support worker.
T. ~ 23yo daughter
I probably should have made whole family go for counselling to help them deal with how our daughter's personality affects the whole family and to give them more skills on how to deal with her responses, especially because my daughter is a twin and her sister has a tough relationship with her.
What do you love most about your child?
D. ~ 3yo son
Lots of things. His smile and the fact that he trusts me and is willing to try anything, or at least consider it!
J. ~ 18yo son
He has a very strong self-identity: he marches to his own beat of the drum, says what he thinks, shares his beliefs and doesn't waver on them, and is passionate about the things he believes in.
N. ~ 7yo daughter
She is an amazing person who is very loving, caring and unique.
C. ~ 11yo son
His gentleness, and he is more proper than me! Always makes his bed and makes sure everything is in the right place!
L. ~ 18yo son
He is very matter-of-fact, very loving, and has lots of ambition.
K. ~ 6yo son
My son has a lust for life that is unrivalled. He is so intelligent, and so much fun to be around. He is absolutely hilarious, full of smiles and an entertainer.
S. ~13yo son
I love the questions he asks. They're deep and connected to a desire to really understand. My answers are frequently re-visited days later, seeking clarity on contradictions he's figured out or needing more detail ... He blows my mind simply expanding upon the concepts. I've got to be on my game to keep up with his mind.
N. ~ 13yo son
Creativity!
F. ~ 7yo son
He loves to be active and have fun.
S. ~ 12yo son
He's amazing. He's my son. There's not one thing I love most. I just love him.
T. ~ 23yo daughter
My daughter has grown so much as a person, she is so thoughtful, and loving even though I drive her crazy! She has learned how to apologize for her meltdowns when she has had time to calm down. She is so easily forgiving and generous. There are so many reasons why I love her... She has accomplished so much and most recently just graduated from University!
What’s the greatest challenge you/your child faces right now?
D. ~ 3yo son
Perspective taking. Not being so directive in his play and activities with myself and other kids.
J. ~ 18yo son
As he prepares for college in the fall, there is a lot of work he needs to do to get himself ready. It requires a lot of support, many connections with resources through the college, and a commitment from us to continue doing whatever it takes to help him succeed.
N. ~ 7yo daughter
I think our greatest challenge is that (for her) it is an 'invisible' disability. So people don't understand or forgive easily. Kids find her motor stereotypes weird, and grown-ups expect her to follow directions. For example, at a swim test at a local pool, my daughter who is a good swimmer failed because she couldn't understand what the life guard wanted her to do, and her confusion and stress level made her seem a weaker swimmer.
C. ~ 11yo son
Teenage [years are] coming and we haven't figure out how to get him to talk.
L. ~ 18yo son
His biggest challenge right now is finishing college and making the transition to adulthood.
K. ~ 6yo son
Our greatest challenge is other people. Not all people. Only the ignorant ones who stare or have no patience. Or the ones who want to cause harm or take advantage (he's very trusting). I don't have any concerns about him because I know nothing is static. Kids are constantly developing, learning and maturing. He has plenty of time. But I need the rest of the world to get on board and never underestimate him.
S. ~ 13yo son
Social acceptance. He's two years behind in the playground. His peers are forming their cliques and he's struggling to fit into any of them. His response to it: "That's OK. One day, they'll be asking me for a job, so I'll just look forward to that!"
N. ~ 13yo son
Behaviours and anxiety.
F. ~ 7yo son
Tantrums. I'm only person who can control him.
S. ~ 12yo son
Puberty. Changing friendships. Understanding why people act the way they do and how to respond in a way that respects yourself.
T. ~ 23yo daughter
Greatest challenge right now is our communication. (I have ADHD and tend to overwhelm her). She needs help for social skills and anxiety reduction and how to manage receiving an answer of "no" to a request she has made.
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