The lived experience on social media

I follow a lot of autism, disability and parenting pages on social media. I join a lot of groups and find it helps fill my news feed with a life that is a little closer to mine – rather than the glossy Insta-worthy world usually shown.

Recently I began to add some adult specific pages. After 20 years living and breathing disability, I like to think I can hold my own in these groups (even though I am not an adult with disability).

Supporting newly diagnosed parents

person using smartphone
Photo by Omkar Patyane on

Sometimes I offer casual advice or words of encouragement to parents of newly-diagnosed children – particularly those with autism.

I tell them to take their time. It is okay to grieve. And I tell them they are not alone in their experience.

I did this recently in a new group I had joined. A parent of a newly diagnosed child was asking about his future. She asked about employment, adult relationships and children of his own.

I suggested she take her time, and take each developmental stage as it comes. Don’t look to far into the future and concentrate on what you can control. And get support for yourself, this is the start of a long journey.

Disrespectful or just a different experience?

woman showing paper with prohibition sign
Photo by Anete Lusina on

The administrators of the page jumped on me. They sent me numerous inbox messages and responded to my comment. I was supposedly disrespectful and ableist. My comments about the carer-parent experience was in breach of the group rules.

I understand where they are coming from. They are concerned that if we talk about our difficulties as carer-parents, we are disrespecting the autistic experience and rationalising abuse toward autistic persons.

I respect that autistic adults are proud and want to be accepted for who they are. I understand and support this. But carer-parents are struggling. They need support to understand and guide their children to be the best they possibly can, to embrace their differences and be a part of the community.

I do not subscribe to the victim mentality, nor do I promote autism ‘cures’. When my son was first diagnosed in 2004, I scoured the internet for stories of children who were “no longer distinguishable from their peers”. I thought that was our goal. And no one told me differently. I have learned over the years, that our goal is much less clear than that, and it has taken a wealth of learning and guidance to get to that point.

Carer parents are doing it tough – and it’s okay to admit

The carer-parent experience is real. It is tough. And it needs acknowledgement. We should not have to sacrifice the perspective of one party to hear the perspective of another.

To parents who are struggling, it is okay to not be okay with it all. It is okay to have a bad day and to hate your child’s disability now and then.

The struggles are real, just as our children’s are.