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April is Autism 'Awareness' month, and it hurts.

Uncategorized Apr 27, 2020

April. Is. Hard.

(The following is expressed with gentleness and respect from an autistic person, and from one parent to another).

Part of my identity in this lifetime is that I’m a Mum.

I’m a mother of four daughters.

I’m not an ‘autism mom’ and my childrens’ disabilities or identities are not mine to claim for myself.

I am, however, the mother of autistic children, or where I refer to myself, I am an autistic mother.

But that’s related to me being autistic myself, and a Mother.

I own those identities as they are parts of me, that stem directly from me.

April is often a time of great difficulty for the autistic community.

It’s a time where I’ll be exposed to many of the symbols, memes, quotes, myths and voices of people, places and things outside of actual autistic people themselves.

It’s a time where we see all of the very things we speak out against flooding our newsfeeds.

The puzzle piece - originating from a charity that at the time of the puzzle piece’s inception, was responsible for enabling and overlooking systemic violations of basic human rights.

Autistic rights.

Autistic abuse.

The puzzle piece was used alongside the image of a crying child.

There’s nothing quite like the use of a doom and gloom autism narrative to muster financial gain.

The ribbon filled with puzzle pieces.

An awareness ribbon.

Autism is not a disease or something to be cured.

Awareness is a thought; an acknowledgement or recognition, whereas what the autistic community vehemently seek - ACCEPTANCE, is an action.

I promote family centred practice for families raising autistic children.

I recognise the importance for all members of the family to be supported, but NOT because of autism.

I work with families in this way in order for us all to recognise that wherever our challenges and difficulties lay waiting in life, is where we’ll be met with mirrored reflections of the unhealed and the unknown within us.

Within us, separate from our child.

When we focus on ourselves, when we understand our own support needs, our focus can then begin to shift from what we perceive as the problem (autism) and into what really is the solution (loving and nurturing ourselves in order to give the same to others).

Autism is not a word to represent a burden, a difficulty or a life sentence for families.

It is my identity and culture.

And I’m not okay with it being used as a deficient part of another’s identity; as a pain point.

When we focus on ourselves as parents, when we seek to know and understand ourselves, we come to see that we no longer need to wear a puzzle piece or an awareness ribbon to announce to the world WHO we mother.

Or to insinuate how challenging our lives may or may not be.

We can ask ourselves why.

Why is it so important for me to share with the world my child’s disability in reference to my parenting ability or style?

For many of us, when we, autistic people see that puzzle piece, see those memes such as “I love someone with autism”, it results in us feeling like burdens.

Like hard work.

As though loving us needs to be printed on a shirt because it’s a challenge.

And yet, as parents, we shape and mould our parenting styles to intuitively love and nurture our children, until the word autism becomes a part of our vocabulary.

That’s where for many families, ‘experts’ INTERVENE.

I often wonder how many families use puzzle piece stickers and seat belts, t shirts and caps in order to hopefully muster compassion, empathy and understanding from members of the public who come into contact with our autistic children.

This is, indeed a sad reflection of society not getting it right, in many of those moments.

However, a person willing to voice their uninformed, uneducated, unsolicited advice to a stranger over how to raise their child is the problem here; not an autistic child.

We do not, as autistic people and families, owe it to society to announce our presence in order to ask for love and acceptance.

Our autistic children experience true love and acceptance when we live a life aligned with our support needs and neurotype.

They notice and remember when we use our voices to ask for what we need; to educate others.

They learn self respect and self love when we respect and love them as they are and treat ourselves with love and respect as their models.

Acceptance.

Not only acceptance for autism, but acceptance of our own need for care, acceptance of a society in need of growth, acceptance of our rights and responsibilities and our need to avoid those who do not accept or respect us and our boundaries.

Awareness is an elusive term that charities latch onto in the hopes of raising money by using sad, hopeless images of autistic families.

Autistic children trapped behind glass, as though there’s a barrier of some descript keeping them from the ‘normal’.

Awareness kicks off events such as “Light it up blue”, not overly popular with the autistic community because of the charity that started it.

And in order to save myself from going too much into that, here’s a clip where you can sample some of their work:

https://youtu.be/9UgLnWJFGHQ

But I’d advise against it.

It was largely confronting for me as a parent to learn how my use of the puzzle piece and calling myself an autism mum was received by the autistic community.

I was angry. Embarrassed. Hurt.

I felt, at that stage of my life, that my life was very difficult and there was simply no empathy involved in telling me I was behaving like a martyr.

But the truth is, imagine how our children might feel to see images and videos shared across the internet in their most vulnerable moments as though they’re not human.

Not entitled to privacy, dignity, safety and security.

Autism does not strike out human.

It amplifies it.

Where we might be having a difficult time as families, we can seek support, and if we’re not getting it in the places we might expect, then perhaps we aren’t the problem, and we might keep seeking support elsewhere.

We can learn how to shift our beliefs and understandings to learn about what autistic people need and how they thrive.

We can take the parts of our identities that we own, and not those of our children to show up in the world.

Our children are not extensions of ourselves, but separate human beings with lives to live out with our support and care and the best parenting we can manage to have them remain safe and connected to us in trust and love.
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Kristy Forbes
Autism & Neurodiversity Support Specialist

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