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: https://www.facebook.com/autisticnotweird/

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16 thoughts on “Three Lessons an ‘Autism Mum’ Learnt From Meeting an Adult Autistic Advocate.

  1. Chris is an amazing man, and you are an amazing mum. Amazing people often go well together 🙂 It’s sad that some have been upset by your words, but not acceptable that they have left hate comments. I try to stand by my mum’s wise words ‘ if you haven’t got anything nice to say about someone, don’t say it at all’. We all have our own opinions, and we can all only write intentionally for ourselves, not on behalf of others, although sometimes (as in your case) many others reading will share those experiences and feel uplifted to not feel so alone. I truly hope you do carry on writing x

    Liked by 2 people

  2. Loved what you have written and I’m sorry that you have had people being horrible to you. I am an Autistic adult as well as being an Autistic mum, it’s challenging, my brain works like my son’s however I still worry about my child’s future as you understandably do

    Liked by 1 person

  3. I love how honest you can be and put your hands up and basically say you’re not perfect just a parent trying your best. What shines out for me in this is just how wonderful Chris is; he’s managed to get you to see this and quickly bonded with your children – doesn’t that just make you see how amazing he is, and that your child is like that too. I have to admit my fears for my son at 5 (although he wasn’t diagnosed until 10) were massive, and although he still struggles at 21 he has had a job (even if it was only for a short time mostly due to his asperger’s difficulties), past his driving test and even gone off to university. I do appreciate that he does have the same difficulties that your son faces but I hope that it helps you to have a little more hope than the future you fear.

    Liked by 2 people

  4. This post made me feel weird (in a good way). We’re all human and we all have different views and perspectives, and some of those views can look “bad” or hurtful from a different perspective than our own. I love that you write about that and I also think there is no way to “solve” it except in the way that you do. By acknowledging the other perspective and showing respect.

    Too many people get angry and jump to conclusions, and sometimes they’re right. But mostly they’re wrong. The best way forward is to learn.

    On a different tack: I also love that Chris bonded straight away with your kids! It flags up for me whenever this happens just how much the social aspects of autism are “different, not less” (although there are many other, more disabling aspects). When you see an NT adult bonding with NT kids, they’re good with kids and it’s normal – right? When an autistic adult bonds with autistic kids – that’s totally normal too! It’s just a different way of interacting. So I always find it funny (in both senses) that autism is labeled primarily as a “social disability”, from the outside.

    Liked by 2 people

  5. I have autism, my mum most likely has autism and my two boys have autism. We are all what others might label ‘high functioning’, but each come with very huge deficits in our functioning. We need each other to survive. We live together in one small house and we rarely talk. My mum is the only ‘normal’ verbal one.

    My point is, I find parenting autistic children hard. I find being a daughter to an off beat woman-child mother excrutiatingly difficult. I find being an autistic daughter hard. And I find being an autistic mother hard.

    You have valid points and reasons to grieve. I do too. It is SO much better to sit and openly discuss things than to fight amongst ourselves. Like you, I have days where I wish things were different and we could all be neurotypical. Then there are times I adore my eldest’s amazing IQ, my mum’s strange creativity, my youngest’s brilliant humour and my ability to see beauty everywhere.

    Nothing is easy. Everything comes with pros and cons. Good on you for finding a way into understanding your children. But I can assure you, being both neurotypical or both autistic is no guarantee to bonding well with our children. My youngest and I are chalk and cheese. He cannot wait to be away from me when he becomes an adult. At least you are seeing the beauty of what your children do have. I can guarantee they are universes of richness untold!

    A pleasure to meet you and kudos to Chris for spreading his magic.

    Liked by 1 person

  6. I’m 22 and autistic. I hate all the fighting within the community. People are rude to parents and many people have been rude and angry at me as an autistic. I wish that everyone could get along. Autistics really can understand things parents can’t if given the chance. And great things could happen if we all worked together.

    Liked by 1 person

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