We here at Always Keep Progressing (AKP) are excited to announce the start of a blog series, Autism Stories, which we hope will give voice to the diverse and lived experiences of individuals with Autism Spectrum Disorders. These stories will be told through live interviews with either family members of those with ASDs or the individuals with ASDs themselves. Today, we’ll be hearing our very first Autism Story, coming all the way from France from Sasha S., the mother of a young, 11-year-old boy with autism. (For privacy, her son will remain unnamed.)
A Story from France
A: When was your son diagnosed?
S: A formal diagnosis came around three and a half years old. In France, diagnoses usually DO NOT come that early.
A: How did you initially feel when learning about the diagnosis?
S: Actually, it was a huge relief because he already had all the alert signs of Autism – no pointing, no words at 2, seemed to be deaf, did not answer his name, etc. Accessing the right doctor at the right time was the trickiest part. The delay between appointments in hospitals (yes, plural!) was a pain. It all started with an audiogram because he was “more likely deaf than autistic.” It’s the classic path for parents of children with autism in France.
A: What were the first signs of autism that you noticed?
S: I have two close friends with kids who are 2-3 months younger than my son (including a set of twins). We were all, of course, on the phone regularly chatting about our babies during the first twenty or so months. We still do. Hanging up the phone, at the time, I was thinking, “How come my son is so calm compared to their children? The idea to stuff a banana into the Blu-ray or into Mom/Dad’s shoes would never occur to him.” The more we talked, the more it became clear that I was not living the same mother-child relationship as my friends.
A: Tell us about some of the things he struggles with because of his autism. Also, share with us some of the things he excels in.
S: My son struggles mostly with changes. Everything requires anticipation and preparation so that no meltdowns occur as a result of sensory overload or nonsense-crisis. He excels in horse-riding and piano.
A: In your experience, what has life been like as a mom with a child on the spectrum?
S: He’s my firstborn, and will probably stay an only child, so I can’t compare to the neurotypical motherhood and lifestyle. I don’t know how to answer the question. It’s fine as long as I stay organized, I guess.
A: What are five words to describe your son? Why?
S: Fantastic, funny, tall, happy, and polite! I would not change him for a neurotypical kid. He isn’t broken, so he does NOT need fixing.
A: Why is it important for parents of children on the spectrum to advocate for their children?
S: When I speak in parents’ meetings or associations, I emphasize the need for parents (and, I believe, grandparents) of children with ASD to start training themselves, out of respect for the child. There are still doctors who tell parents to give up any hope of progress for their child – this is something I was told in my very first meeting with the assistant of our local doctor. Shouldn’t the health system help parents? Isn’t that its job in the first place?
In order to help my son, I became fluent in French Sign Language. He’s verbal now, but still uses signs. I’m also well-trained in Makaton, ABA, SACCADE, Autism Education and Teaching, and Autism in general. I read all the books on autism that I can get my hands on – in French, English, German, Russian, or any language. I think of it as my tool bag. I also do one training session a year, sometimes two if it becomes necessary.
I know many parents stuck in a phase where they’re trying to answer the question, “Why is my child an autist?” This kind of thinking is understandable – it’s a huge shock in anyone’s life. However, the more useful question to me is, “Okay, my child is an autist, so what help and training can I get so that I am a proper parent to this child?” Autism awareness can help to empower parents.
A: How important is early intervention to you? What are the different disciplines of therapy that your child receives on a regular basis?
S: Easy one: early intervention is crucial. We began very early, even before diagnosis, because it’s a race against time. No point denying that.
We still do speech therapy, occupational therapy, and psychomotricity during the week. I expect we won’t stop anytime soon. He goes to school, too, of course.
A: How have you handled stress as a mom with a child on the spectrum, and what words of encouragement or advice do you have for other moms?
S:Yoga!!! My encouragement to other parents is the same that I was once given: Focus only on what your child CAN do. Meet up with other ASD, Down Syndrome, or special needs parents. Lastly, give lots of love and use lots of common sense.