A Glimpse into our autism: Voice

5 December 2018

Dear friend,

Last night I couldn’t sleep. This time I wasn’t laid awake worrying about one of my boys, something I said wrongly, what to make for dinner tomorrow or the washing I forgot to take out of the machine. I was actually thinking about an exchange on social media.

I proudly display the following quote on my blog:
“Don’t be afraid to tell your story because your voice is important and your story is unique” Meredith Levitate

But this exchange left me wondering if my voice was important or indeed relevant...

In the 4 years since I started blogging a lot has changed.

The autistic community is demanding acceptance and challenging the deficit model. It feels like autism has finally come of age, along with a wave of children who were diagnosed as being autistic.

Autistic people are strong and capable self-advocates shouting from the rooftops about what it means to be actually autistic. Fighting the stereotypes, demanding to be recognised as neuro-divergent and not less and for basic rights to good health care, education and access to services and activities.

There is a welcome shift in thinking towards a more inclusive society that celebrates neuro-divergent people. We are seeing a massive movement towards real change. Starting at the person rather than at the cure.

Writing started as a sort of therapy for me. A place to open up about my concerns and to share experiences. It made me feel less isolated at a very difficult time when I felt like I was drowning in my emotions.

It is an indictment of mental health provision for parents of autistic children that so many have to turn to an online world for help.

I hope that anyone who has read my blog knows that I have always approached my writing from a place of love. That I want acceptance and understanding for my son. I don’t want to change him. I want to challenge the stereotypes and provide a positive space for parents of children with autism.

I am open to learn and to engage in healthy debate. But I am extremely uncomfortable with the extent of the negativity, towards parents of children with autism.  Lately, I have witnessed several extremely aggressive exchanges on social media and some very intimidating behaviour.

A few weeks ago, an autistic person challenged my thinking and questioned my right to speak about autism on a social media platform. They demanded that I '...stay out of...'  certain hashtags.

I took on board their comments. It caused me to re-evaluate, to change some of my language, think more carefully about the hashtags I use and also make it clearer on my social media profiles that I am the parent of a son with autism and not a mum with autism. All positive changes.

But the experience played to my insecurities...

Has my voice grown weary?
Do I have the right to share our experiences?
What will my son think?
What do I want to achieve?
Are autism parents 'watering down' the voices of actually autistic people?
Are autism parent blogs becoming obsolete?

Last night I couldn't sleep. Is now the time to stop?

A huge thank you to everyone who has supported me over the last 4 years. I wish you all a very happy Christmas. 
I will be taking a Christmas break, having a good think and hope to be back in the new year. 

A glimpse into autism is a series of short letters that explore the impact autism has on our family on a day to day basis. Disclaimer: this is our experience not all autistic people are the same.

More autism awareness posts...

If you liked this post then please feel free to share on social media or drop me a comment. Thank you!
Hayley Saunt said...

No please don't stop! For those few nay-sayers there are lots of people reading your blog who know you are helping many other parents and also teachers who are supporting autistio chidlren.

Spectrum Mum said...

Thanks so much Hayley. Your support and words of encouragement mean a lot!

Oldhouseintheshires said...

Catie, you posts are always positive, truthful and fair. It’s wrong for someone else to dictate to you how you should behave whether they are autist or not! Your blogs has been a place of supported for you tovoive what you feel and that’s a good thing. I personally love your posts. I enjoy reading about your experiences and how your son is getting on. I can’t answer how he will feel because I don’t know but perhaps your blog is naturally evolving. Mine is to. As our children grow, our feelings change and their needs change too. Good luck but please don’t stop blogging! #pocolo

Spectrum Mum said...

Thank you for your very kind comment. I really appreciate your support. I am sure you are right about the blog evolving as our families grow.

Enda Sheppard said...

I love your blog ... finding it always illuminating and engaging. One autistic person does not represent all autistic people, so that person has no right to issue such a diktat. But I think you know that, as evidenced by the nuanced and eloquent manner in which you communicate. Your blog, your opinions; nothing stopping your critic from writing their own! #thesatsesh

Spectrum Mum said...

Thank you Enda for your extremely kind words. My understanding is that some autistic people feel parents writing about autism is somehow watering down their voice or making it more difficult for them to be heard. And that was never my intention! Thank you for your comment 🌈

Sensational Learning with Penguin said...

I hope you've slept better since writing this, I really don't think you should be loosing sleep over it... Although, I too wrestle with what my (blogging) role is as a mum, like you, with an autistic son. I'm always concerned that what I do, what I write, the words I choose, pictures i use etc might offend someone. There are quite a few autistic adults who are very strict about terminology etc. Sometimes I need to remind myself that their ability to see things from another perspective may be limited due to them being autistic, so I try not to get angry in the way I would if a non-autistic person would be as unwilling to listen to and possibly consider another point of view.
Your son doesn't mind your blogging about autism, does he? As long as he and the rest of your family are fine with it, and you still feel that you enjoy it and get something out of it, I would hope that you continue to write. Your voice is that of a parent. That makes it different from the voice of an autistic person, but not less. xx #MixItUp

Spectrum Mum said...

Thanks for sharing your viewpoint so eloquently. I agree about a parents voice being different and not less.

Fridgesays said...

#thesatsesh you are one of my fav bloggers, you always speak from love and we live in a world where freedom to express how we see situations is crucial. We would not live in a more social accepting autism world if it wasn't for perspectives like yours. This blog is comfort to mums in similar shoes to you. When you speak from love, love is.
As for someone telling me what hashtags I should use...#onyourbike

Spectrum Mum said...

This is just what I needed to read after such a challenging time. You actually made me cry! Thank you 🌈

Hayley Saunt said...

Popping back for #thesatsesh xx

Spectrum Mum said...

Thank you 🌈

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