Three Lessons an ‘Autism Mum’ Learnt From Meeting an Adult Autistic Advocate.

There is a huge chasm within the autism community between parent of autistic children (like me) and adults with autism.

I have experienced this first hand with many of my posts receiving hate comments such as ‘I wish you were dead’ and ‘you are a disgusting and vile human being’ and many more that are totally unprintable. Unfortunately some even crossed a line that involved me having to inform the police.

Sadly the divide is that bad.

Then there are autistic adult advocates themselves writing about autism from their point of view also getting hate mail from some parent of children with autism accusing them of having no idea how hard parenting is and not being able to see their point of view.

The divide is on both sides.

People have placed me firmly in the parents camp. That is natural since I am not autistic myself and I write as a parent of a very severe child who at 9 has no speech. I have been very frank in the past about how difficult and challenging I find raising both my children, but my son especially, and how I have ‘grieved for the things in life he will never be able to do’ and have even ‘wished I was no longer an autism parent’. (Previous posts of mine)

I stand by every post I have written.

However something happened recently that has really challenged me: I met a well-know award-winning adult autistic advocate called Chris Bonnello from Autistic Not Weird. I heard him speak for a few hours one afternoon and the next day welcomed him into my home.

On paper we should be arch enemies but in reality we are friends.

Chris had dinner with myself, my autistic husband, and my two autistic children. Boy was I truly outnumbered as the only non autistic person that night! We travelled in the same car together, ate together, he spend time with both children and then we had a short time chatting before taking him back to his hotel.

It was one night out of the 365 nights in the year yet it really affected me in a deep way.

I learnt so much that night but here are the three main things meeting Chris taught me:

1. The future is brighter for my children than I often think it will be.

In many ways I had planned my son’s future for him: there would be no marriage or kids and likely no job either. He would live with me at home and attend day care groups with people with profound learning difficulties. He would never speak and would lead an isolated, restricted life where few would ever genuinely love him. (This is not me being depressing this is sadly the reality for many like my son)

Chris spent one hour with my son and made me realise that other people CAN and WILL love my son and see his awesomeness.

When your child is very vulnerable it is very difficult to trust others with them. Chris showed me that there are people who will understand my son, respect him, and genuinely want to be around him.

It took an autistic adult to show me that someone will one day love my son as much as I do.

2. The most important thing I can do for my children is spend time with them.

It’s rare for someone to bond with my children so quickly. There are family members who have no idea what my children’s favourite colours are or what age they are. As I watched this incredible man bond instantly with my children by simply being with them it made me realise that whilst my children do need me to advocate for them, make food for them, keep them safe and clean and educated they also need me to just be with them. I don’t need a degree in speech therapy to just talk with them, and just stroking a sequin cushion can be far more fun that I think it will be.

I am a hands on mum and I do sit on the floor with my children playing with them often but then some days I am tired, feel pressured to keep up with the laundry and cooking and switch on the TV or give them iPads.

An Autistic adult entered my children’s world and made me realise how fantastic their world really is.

3. As a parent of children with autism I need to watch what I say and write.

I write and speak as a parent because that is what I am. I am not autistic and I therefore can not write from my children’s point of view. Having spoken with Chris I can see why some of my posts as a struggling, heartbroken parent have been hard for him and others to read. I want to stress that I don’t hate autism or anyone who has it and I love my children more than life itself. The spectrum is huge so when I say I am grieving for my child I am speaking as a parent whose expectations and desires have been ripped apart by having a child so disabled I may never hear his voice. That does not mean I do not love him; just that I need to adapt, not him.

When I say I do not want to be an autism parent anymore in a post I am saying I am tired and struggling with the weight and responsibility of the severity of my sons disability NOT that I want to abandon him because he has autism. As a writer and parent whose children will grow to be autistic adults I have a responsibility to make this clearer in my pieces.

I want to end with an apology to those my writing has hurt. I am finding this difficult because I am living life with two children who speak and think and communicate vastly different to me. I see anxiety crippling my daughter and my son unable to look after himself. I see everyday practical difficulties both my children will face in a non autistic world. I see their vulnerability and naivety and I worry. But please also know I see their beauty, their awesomeness and their incredibly personalities and gifts too. I don’t hate their autism I just struggle to face it myself as a non autistic person.

I need autistic adults like Chris from Autistic Not Weird to keep teaching me lessons and I want to hear.

There is a huge chasm in the autism community but sometimes autistic adults and parents of autistic children can actually make for a beautiful friendship indeed.

We can learn so much from each other.

If you would like to know more about Chris Bonnello you can follow him here:


Four things my severely autistic son has taught me

Having a baby is the most wonderful, humbling, exhausting experience I have ever known. I thought it would be a challenge but I would learn and gain so much.

Then one day my baby was diagnosed with severe autism.

Everything I had ever known about parenting suddenly changed.

I went from being the teacher to becoming the student and despite my son having no ability to speak he has taught me more than any speaker, any book or any course every could.

Here are five things my severely autistic son has taught me about life:

1. If you enjoy something, repeat it! 
All too often in life we are told to ‘move on’ or ‘grow up’ or ‘you are too young for that!’ My son has no concept of age appropriateness nor is he affected in any way by peer pressure. He enjoys a ride on a train to the same station to see the same elevators over and over again. He watches the same videos on you tube over and over. He presses the same button of the same toy repeatedly and still laughs.



Isaac has taught me that if something fills your heart with joy never be ashamed to relive that. Life is to be enjoyed over and over and over again. I need to go back to finding joy, just like him, in the simplicity of life over and over again.



2. Stop worrying about other people!
Isaac has no awareness of others. He is not afraid to get on a roundabout even if a group of older children are in his way. He is not afraid to flap, spin, laugh and clap even if others don’t join him. Bullying goes right over his head. Comments from others don’t affect him. He could not care what he is wearing, where others are going or wether he is included or not. He does not aspire to be politically correct nor does he want to lead the crowd. Instead he is blissfully content being who he is, exactly how he wants to be.


I want to be more like that.


Life is not about doing what everyone else is or pleasing others. He is different, and happy to be so, and there is a lesson there for all of us.

3. There is other ways to communicate without using words.
I talk far too much. Most of us do. Isaac can not talk at all so he relies on other, much more basic ways to communicate. He sits beside me if he wants a hug, he screams if he is unhappy or scared, he takes my hand to lead me, he finds photographs of things he wants.


To most his communication is too basic, too rudimentary, to learn anything from. They are wrong. Speech is not a ‘higher’ level of communication but rather a way to communicate that is actually too easily misunderstood. We can say we are happy yet our body language says otherwise. We can say we love when we actually don’t. My son simply shows me in beautiful and simple ways. They say actions speak louder than words and perhaps we all rely way too much on spoken and written language when a simple hug or smile would convey much more?

4. Don’t worry about the future, just enjoy today!
Isaac has no concept of ‘future’. He lives in the here and now and at 8 is just about coping with the basic idea of ‘first and then’. He has no worry about politics, or religion or current affairs. He has no concerto of wars, shootings or terrorism.


He lives in the moment.


He eats food and enjoys every item with no consideration for cost or sell by dates. He is as content to eat an out of shape vegetable from a low cost supermarket as he is eating out in an expensive restaurant. As long as he gets to eat he does not care! He never stresses about money or where it will come from neither does he desire anything of any real value. He will play with a coat hanger flapping it for hours without any idea that most would view it as trash. While we may not be quite as able to ‘live for the moment’ as he is we certainly could learn from his care free lifestyle and worry much more about today than the future. First today, then tomorrow could be a motto for us all.

Isaac will most likely never read, or write or live on his own. Does he care? Not an ounce. He has zero idea about toilet training and he is not in any way worried what anyone thinks about that. He wakes up every morning happy. He laughs at the same you tube clip that he laughed at yesterday, and the day before, and the day before that too! He drags me to the cupboard for food and is neither brand aware nor cost aware.

Life is simple. Life is fun. Life is about today. He dances to his own beat and I am proud of him.


He brings me delight every day. He has so much to teach us.


He may be severely autistic and non verbal but the world is a better place for having him in it. 

People tell me he needs to be more like us. I disagree. We need to be much more like him. 


IMG_1466A version of this blog first appeared here