Do parents have unrealistic expectations for their autistic children?

Do parents have unrealistic expectations for their autistic children?

Recently, in conversation with a group of educators, I recommended some resources and videos from well known autistic self-advocates.

One of the teachers shook her head and said, “I have to be careful with that. Parents might look at some autistic self-advocates and think their child will have brilliant careers as speakers and authors like Kerry Magro, Chris Varney, or Temple Grandin; this can give parents false expectations”.

That struck me, and I have been pondering on this since.

Are autistic self-advocates giving false expectations to parents? 

In this blog, I would like to share what it meant to me, as the mother of an autistic boy, to see these autistic self-advocates speak on a stage.

During my 20 years professional career as an education consultant, I attended many talks and conferences on autism. Most of them run by autism experts and researchers from all over the world. At the time, the vast majority of speakers were neurotypical.

After my son was diagnosed with autism, I felt the need to listen to autistic people. So at conferences, I would look for autistic adults and make sure I attended those talks.  

I had the opportunity to listen to Temple Grandin speak in Dublin many years ago, and I still remember every single word she said, every piece of advice she gave.

Was she giving me false expectations and making me believe my child would also become a PhD and published author like her?

Not really. My son wasn't even speaking yet, and I didn't know what was ahead of us.  

What captivated me was how this woman lived her life. How she got to know herself, how she discovered her strengths, what was difficult for her, and what helped her overcome barriers. And most importantly, how she loved and respected herself.

I love that autistic people have claimed back the word "autistic" and dignified it, a word that professionals stopped using years ago because of the negative connotation.

I discovered the neurodiversity movement when my son was five years of age. At that point, we had done almost three years of early intervention. I was exhausted trying to change things, bringing him from one appointment to another, travelling the country seeing private therapists, special diets, and whatnot.

As a professional in early intervention, I was too focused on changing things, or should I say, changing him... that was what I thought it was right back then.

I was in a fight against autism.

But at the same time, my heart was telling me to do something different.

I just adored my son. All of him. Flapping hands, strict schedules, sleepless nights. But also endless love, tight cuddles, and his passion for music. Secretly in my heart, I just loved him as he was. He was whole, perfect, and worthy of love... was I crazy? Shouldn't I continue my fight against autism?

Getting to know autistic self-advocates reassured me that what I felt in my heart was the true path. I didn't need to change anything about my son, he was autistic, and that is ok.

Don't get me wrong. Intervention is vital, and it is necessary to put supports in place for autistic children. I am so glad that I understood the power of routines and visuals back then and that I could teach my son to communicate in his early years.

These supports are still essential for him today.

Routines, schedules, visuals, social stories, and many other supports help him through his day and allow him to be happy and flourish in the things he is good at. Rather than focusing on changing who he is, we now focus on supporting him in his everyday life.

I am so thankful that we have organisations like As I Am in Ireland, raising awareness and speaking about issues that autistic people face and making our communities more autism-friendly.

As I always say, “Communities that embrace children with all abilities, and communities that respect how we all are”.

Inclusive communities benefit everyone. So it´s a win-win situation.

So back to the question:

Are autistic self-advocates giving parents false expectations to parents?

Not at all.

• Autistic self-advocates inform parents of what our children may be experiencing and how we can support them.
• They are role models and supporters for younger autistic people.
• They are paving the way for our children to be included in our schools and communities.
• They are opening the doors to the workforce for people with autism.
• They are creating a society that values diversity. 

I truly thank autistic self-advocates who shared a deeper understanding of autism with me.