I fear for the rights of my non speaking autistic teen

I fear for the rights of my teen.

She is non speaking, with significant support needs and requires intensive care around the clock.

We already do not have support workers due to lack in skill level and human nature necessary to see my child; to provide care and to see her as human. In 15 years we’ve not accessed a single support worker who can manage.

Our family has hit crisis a number of times, and we’ve been forced to continue to find resources from within..without the support of family, neighbours or friends.

This has resulted in other family members experiencing PTSD, chronic illness, burnout, etc.

Her NDIS plan is tied up in behavioural management and requires a positive behaviour support plan in order to access most of the funding.

We are not teaching people how to care for one another, or how to care for ourselves early enough in life.

We are not teaching people about relationships - what is healthy and supportive, and what is not.

And, the organisations, businesses, charities with the most power are continuing to perpetuate a doom and gloom narrative around my child that encourages people to see her as subhuman.

In the first three years of her life, I would have described her very differently to others. I didn’t know she was as capable as she is, I didn’t know she was as intelligent as she is, I didn’t know she was able to comprehend what she does.

Because that’s what I was told by medical professionals and allied health, and the media.

Every message around us that was readily available spoke to a narrative for non speaking autistic people that was defeatist, ableist, and without hope.

I started learning from non speaking autistic people when she was very young. Reading about their experiences. Visiting and connecting with carers, parents, allied health and professionals who humanised the non speaking community and believed in a better quality of life for all of us, families included. It changed the trajectory of how we all live as a family unit.

Our family life is not for the faint of heart. I don’t speak about it much publicly, due to my child’s right to privacy and dignity and my need to protect her fiercely.

I know my coparent and I provide a level of care that not many would be able to. I know we live an unconventional family life where my ex husband and I, although we have our problems (we are separated, after all), live across two homes with our children in order to keep them safe and we spend family time together to keep them connected.

He relies on carer payments from the government after having to leave his job of twenty years due to our children growing, changing and their care needs requiring more than one adult. I rely on my work.

What I see happening on social media is gut wrenching.

Parents and carers fighting over the needs of their children, arguing over autism, point scoring with heartless, dismissive words exchanged.

All of the advocacy from autistic people, including those of us who speak about letting go of functioning labels, because they are dehumanising do so because we care deeply for the rights of all autistic people.

People. Humans.

I see a shift away from lived experience and back over to pathologising human experience.

I know carers and non speakers require support. God, I know. But all the talk I’m seeing from large Australian orgs firing up desperate parents who share the day to day caring needs of their non speaking loved ones, and using that to dismiss and invalidate autistic people who can speak, drive, etc is awful.

Please, learn from non speaking autistic people. Do you see them invalidating and dismissing the autistic experiences of their peers?

So many won’t bother because they assume the people I’m referring to are not significantly disabled because they can type, or they completely invalidate spelling as a communication method.

Are we really thinking of non speaking people here, or are we out to win arguments and compete with others?

The non speaking experience is different to my experience as a speaker, yes. Autistic people can come with co-occurring conditions such as dyspraxia/apraxia which impact the ability to speak and move our bodies. This too is an experience of fluctuating capacity.

I’m really challenged to express here, but we are collapsing in on ourselves as a community.

My child is not profoundly autistic. She is absolute sunshine, and has the right to a quality of life just as anyone does.

Calling her profoundly autistic feeds into the stereotypes and misunderstandings around how HUMAN and worthy of life my child is.

Not how autistic she is. Not how much care she requires or whether her disability is real.

It influences how people consider her, see her, understand her.

Any advocacy that speaks to the parent experience only is inadequate.

When was the last time any board member, decision maker or policy change maker was a non speaking autistic?

Relying on the accounts of burnt out, unsupported parents to speak to non speaking experience is inadequate, misleading and dangerous in terms of how it filters out into the supports we do receive.

The need for carer support is not the same as the rights of non speaking autistic people, we are confusing the two.

Again, if you had asked me in the first years of my child's life how I felt, and how I understood her, I'd have relayed a very different experience.

Leaving out non speaking voices because we think they aren't disabled enough because they can spell is gatekeeping and ableist.

I do not need pity. My child needs to be seen as human, this is how we access support and understanding.

Autism does not destroy families. Misinformation in the hands of power does.

KF