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  • Kristy Forbes

Listen to the voices of autistic people


Often when I write or speak about autism positively, I’m met with the hardships and challenging experiences of those whose autistic children have grown into adults and are having a difficult time in life.

Some autistic adults will require full time support, some will not feel able to work for others in employment, some will experience severe anxiety and find it terrifying and overwhelming to leave the family home.

I understand this as a parent of autistic children, as a professional and as an autistic person myself.

It is very real.

It does not, however, address or represent the experiences of every single autistic person, or autism alone.

It also contributes to the stigma attached to the adult autistic experience and dismisses the number of autistic adults who are living lives that are fulfilling for them.

It is most important to recognise that there are many families living in crisis, who are not receiving the support they require.

It’s important to recognise that whilst as a collective, many of our experiences with obtaining and maintaining support for our children is still difficult, it is substantially more progressive in terms of those clinicians seeking to practice under a neurodiversity paradigm, where the autistic neurotype is not only recognised as a difference moreso than a disorder, but it is valued and understood.

There is much trauma experienced by the autistic community in terms of research, information, clinical practice, abuse and institutionalisation of us and our kin, parent blaming and shaming, and the effects of this are still prevalent today.

As a community, we are fighting HARD to leave this behind.

However, our voices often still go unheard due to mythical, fictitious understandings of us, such as ‘rigid thinking’, ‘inability to take the perspective of others’, ‘lack of empathy’, which is a form of gaslighting our very reasonable and appropriate responses to ableism while feeding the narrative that our perception as autistic people is rendered unreliable due to our faulty, second rate processing.

Whilst it is a reality for families to have the experience of their adult autistic child requiring care, support and appearing to lack the independence families would like for them, it is also common for non autistic families to share this experience with their adult children, for a myriad of reasons.

Poor mental health, mental illness, physical disability, illness, incapacitation due to injury, trauma, many, many reasons.

We are not exposed to those experiences or that information as readily as we are the autistic community when the circles we move in are largely autism related.

The autistic community has been asking of the professional community supporting autistics, for a number of years now, to refrain from the assumption and conclusion that all conditions that ail us be considered a part of being autistic.

That too, is a form of gaslighting and medical negligence.

Co-occuring conditions such as heart disease, eating disorders, anxiety, depression, autoimmune conditions, hormonal dysregulation and other chronic and mental health conditions have long gone dismissed and/or untreated in autistic people, particularly chronic pain conditions such as gastrointestinal distress due to the correlation being considered a means of dismissal as ‘just a part of autism’.

This may explain why we see such incredible numbers of autistic adults unable to live the lives that they deserve, unable to thrive.

Lifelong, untreated co-ocurring conditions may often result in another co-occuring condition of post traumatic stress.

Trauma.

When we consider the narratives and treatments autistic adults of today have lived through, such as behaviour based interventions that attempt to normalise us, it isn’t so surprising that there are serious implications around quality of life.

It is important to remember that parents were in fact encouraged to institutionalise their children and placed their trust in a system not built to accommodate diversity. This is also the experience of families and individuals with many conditions and disabilities; not only autistic people.

The good news is, there are thousands and thousands of autistic adults speaking, writing, creating information for families based on their own, lived experience as autistic people.

They are challenging information readily available to families for the past 70+ years (which really hasn’t changed dramatically despite this), and offering new narratives of hope and understanding.

We are passionate, honest and many of us moving through the trauma that has informed our experience.

This trauma is often received as bluntness, rudeness, inability to take the perspective of others, rigidity of thought, black and white thinking, among a range of other commonly held beliefs of the autistic community.

When stereotypes are held onto for over 70 years and information, interventions and support offered revolves around these stereotypes, more and more misunderstandings arise.

One of these is that people such as I, could not be autistic.

Autistic people who drive cars, study, communicate verbally, have friends, exceed expectations and stereotypes of what autism looks like, have their identity, their entire lives dismissed and denied.

When (if) you read the statistics around suicide in autistic populations being 16 times more likely, we’re not addressing those of us who are branded ‘low functioning’ or ‘the real autistics’. We’re addressing those of us I mentioned above, the apparently ‘high functioning’ autistics who, actually, according to society aren’t really autistic.

And then there’s the incredible injustice of those who do not communicate verbally being regarded as completely redundant as human beings.

Completely intelligent, valuable, beautiful human beings, having their intelligence measured by the way their bodies move or the sounds they make.

A total injustice. Exposed to those around them speaking ABOUT them as though they’re incoherent or not present.

And what about those who would surely fit somewhere in the middle of this imagined linear concept of human with ‘high’ or ‘mild’ at one end and ‘low’ or ‘severe’ at the other?

As a community, we see each other. We respect each other. We communicate in many ways.

We are blunt and honest with each other, some of us more sensitive than others.

We don’t feel the need to argue amongst each other over who is ‘more autistic’ or who is permitted the identity of autism, or whether it’s true because a professional with no insight into our lived experience ticked off the boxes to say whether we are who we say we are.

It seems it’s everyone else that picks up that tab for us, while we’re busy getting on with fighting for our rights. Fighting to be seen. Fighting to be accepted. Fighting to be valued.

We have more opportunity today than our autistic kin have had in times gone by and it’s still falling significantly short.

Our conditions need to be assessed and treated separately.

Our intelligence and competence needs to be assumed.

Our support needs need to be seriously considered and taken very seriously.

Support for us needs to be lifelong; not just in childhood.

Support is NOT intervention or normalisation.

Autism is a neurobiology. We are diverse beings, not only neurologically.

We are diverse beings. Whilst we are an autistic community, we are still human beings with different interests and feelings, experiences and identities outside of being autistic.

Diverse humans.

Narratives around our children growing into adults who cannot fend for themselves do not help.

Narratives around a broken system working towards valuing, understanding and respecting autistic people do.

Autism is a disability. It is 100% a disability. However, the disability must not be solely assigned to the person (medical model of disability), but understood as the person’s disability fluctuating largely dependent on the environment around them, and how well they are accommodated and supported (social model of disability).

Most stories, most experiences we are exposed to in the media and via society are family narratives, not autistic narratives. They are based on struggling parents and carers or painting parents and carers as saintly for contending with the burden of autistic people. Commercial media bodies are focused on fear narratives, doom and gloom, ratings and shock. There is no reason for them to televise or print stories of thriving autistic families like mine. What’s in it for them?

The stories in the media around autism are never representative of our stories; our lived experience.

What you see of autistic people on current affair programs in meltdown or being physically aggressive are reasonable responses to strangers invading their safe place with and putting cameras into their faces whilst their parents and siblings discuss the burden of raising them.

Those stories are the experiences of unsupported, struggling people who require help, love and compassion but instead are used as pawns in the economy of exploitation.

My story, my life as a happy, thriving autistic person doesn’t mean my life is perfect, nor does it cancel out the fact that I am really autistic.

When I am unsupported, misunderstood and distressed:

I still have meltdowns.

I still self harm.

I still shut down.

I still become non verbal.

In my daily life, I support myself by:

Rocking.

Stimming.

Verbally stimming and outputting.

Engaging in echolalia.

Writing.

Singing the same line from the same song repeatedly (as mentioned in echolalia and verbal output stimming).

I am autistic.

These are normal behaviours for me, ways in which I move my body to regulate when I am happy, sad, etc.

I feel everything in my body.

Also, my story as a happy, thriving autistic person does not cancel out the stories of many autistic people who are experiencing disability differently to me, who are in the midst of significant struggle.

And, those stories do not cancel out mine.

We are all autistic people. We are all human beings.

There is no, one representation of autism.

The best way to learn about your autistic loved one is to connect with them in ways that feel comfortable and safe for them. By tuning in, by being present, by living in the moment like we autistics do.

Observe what we need to be supported, rather than paying a stranger, no matter how many degrees or how much clinical experience they have to work out supports.

The word autism is not an instant prerequisite for interventions and therapies.

Does your child need speech? Do they need OT? Do they need a psychologist? Why? How do you know?

Don’t be sucked in to the autism package deal.

We are human beings, diverse in nature, diverse in needs.

Therapeutic supports and professionals can make a wonderful team but the prerequisite should always be that they listen to you and your child, that they hear you and your child, that they respect neurodivergence.

Intuition is everything and the best thing is, it’s free and we all have it. BUT it can be disconnected by the experience of being disarmed, gaslit, by trauma and by abuse.

Autistic or not, we are still your child just as you know us to be.

Trust that gut above anything and everything else but mostly..

LISTEN TO THE VOICES OF AUTISTIC PEOPLE. . . . . Kristy Forbes inTune Pathways . . Image: Daniel Dorsa

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