Trigger warning: suicide, profanity.
Holy crape balls!
I’ve been learning about the different types of therapies/programs, including the primary approach that are used around the world to 'help' our beautiful autistic children.
I will not mention what they are.
Everyone is up to where they are up to, and every parent chooses what is right for them and their child. The pressure is 'on' from every angle, and we all are doing the best we can with what we have, and usually, that’s very with very little.
And yet I … CRINGE seeing what I’ve seen and the words I’ve read!
These programs seem to fix, change and cure amazing children like mine, passively aggressively violating their rights – especially their right to say 'NO' – 'STOP'. My child needs to know they can say 'NO' to safeguard them from abuse, mistreatment and doing things that aren't good for them. My child is so lucky they were not exposed to all of these types of approaches to ‘help’ them. When my child was going to school, a 'socialising' program for autistic children was suggested. I remember not having a good feeling about it, I felt yuk – uneasy – anxious.
Our intuitions are always communicating to protect our children and us.
My child wasn’t older enough. Thank goodness! I didn’t want my child to artificially learn social skills from adults whom I didn’t know or know what values, morals, principles or social expectations they believed my child should be living up to. I sensed they wouldn’t be aligned with mine and I feared my child would be violated (emotionally or mentally) in some way.
I didn’t have the words for these programs back then – just a yuk feeling.
When my child became a natural autodidact learner (no school or its approach) service providers suggested different other activities to ‘help’ my child with ‘socialising’. Again I just didn’t feel 100% right. Fortunately, my child couldn’t attend, again, as they were still recovering trauma from attending school. Any social gatherings, activities or events were out of the question.
To force my child to attend would have been traumatic.
I guess I wanted to know what the differences, if any, were between the way I care for my child and the approach of therapies available for autistic children. Perhaps I wondered about this because I am now witnessing my child experience significant changes, that we haven’t seen in four years – since taking them out of the education system. My child has been incredibly happy, vibrant and energetic for some months now; singing, dancing, performing, animated storytelling, travelling and loads of chitty chat – it’s magnificent.
And it’s been without ‘socialising’ programs.
We only have one professional in our life at the moment. An excellent, gentle, friendly, easy to talk to paediatrician. We would still have a psychologist (who mainly spoke with and supported me) however their services stopped, and there isn’t another like them around where I live. I’ve read about the therapies the other professionals utilise and it makes me feel – yuk.
Because of this feeling, I won’t allow them anywhere near my child.
When my girlfriend informed me some families don’t have a team of professionals for their children I thought (at first), ‘gosh that’s winging it isn’t it – with your child’s life?’ However, when I didn’t find any professionals who radically accept autistic children with a strong foundation with a strength-based approach, (but rather aim to cure, fix, change and/or wrong children), I found myself not having a professional team too. Come to think of it, by not having a team of professionals it will make it more difficult than it already is to be granted funding for our assistance dog that I am paying for with my carer’s pension.
If we don’t comply with the system, we experience more hardship and discrimination.
I’m realising more and more that our society tends to be about, ‘conform or suffer’, creating discrimination and hardship for those who don’t, won’t or can’t conform. And some of these therapies for autistic children seem to personify conforming. They have all the flashing whistles; backed up ‘scientific evidence’, 'evidence based' and ‘fantastic’ testimonials. Yet when I read past the advertising, one way or another they still aim to fix, change, cure and/or wrong, my child, for being who they are and aim to make them ‘normal’ (neurotypical) – and FAST ('intervention').
And it's how they try to make my child 'normal' that is deeply disturbing.
The word ‘intervention’ makes me feel yuk (it’s more like intrusion), and it's used a lot. When my child was affirmed by professionals (I already knew, but there’s no ‘help’ without a ‘diagnosis’) that yes my child was indeed autistic – I went along with whatever information was thrown at me.
Why? Because I believed I didn’t know much.
My self-belief and confidence were destroyed, and so I trusted what was said by people who studied autism – who were meant to know. But I didn’t realise that the research about us autistics was by non-autistics who pathologised our neurology as disordered skipping right past our magnificence.
The research misses SEEING WHO WE REALLY ARE!
We were again, very fortunate, that the humans that we sought help from were genuine and big-hearted. I liked these professionals from the get-go – they were our tribe. They did their very best to help.
However, my child and I were smashed up inside and out – we were suicidal.
We were dealing with family violence, a family break up, loss of; many friends and family (judged and rejected us before talking with us), our community, my work and career (I’d been developing for two decades). Plus our own trauma and rejection from a loved one (told to stay away) facing a life-threatening illness.
ALL DEEPLY PAINFUL and it wasn’t a good time to engage with multiple costly therapies.
We couldn’t take much on board with our traumatised brains. If anything at all. We were just trying to get through one moment to the next to stay alive – we were not well. My child's psychologist had a fantastic understanding of our brilliant autistic neurology and trauma – they were our lifeboat. The Speech and Occupational Therapy would have been better placed on hold. There was too much going on for my child and me to grasp, everything was overwhelming.
There was too much too quickly, and we spent a shit load of money.
This caused financial hardship, putting more pressure upon our very distressed and fragile family which lead to our break up. As my girlfriend says “you almost need to be an f’–ing millionaire to be autistic these days or don’t even try to bother trying to survive with that label. It’s clearly a very expensive designer/luxury branding!” Yes indeed! We don't have enough money for a team of professionals AND a service dog.
We chose the dog, that my child believes the Universe chose for them.
Our therapy involves surrounding ourselves with our tribe – most are brilliant autistic humans. Our humans understand we are in great need of love and support and no pressure. They are flexible, compassionate, respectful, understanding and accommodating to our needs. When our child opens up about their stuff, the adults respond with humility, gentle care and personal sharing of their own experiences.
This normalises and affirms my child's feelings, thoughts, behaviours and fears.
It is in storytelling, open and relaxed sharing that my child learns about themselves and others. My child is supported to think, feel or believe differently – this is their personal right. They are encouraged to question the information they hear. We 'socialise' my child through respecting them, ourselves and others without fixing, changing or curing our autism. We enjoy who we are and celebrate one another's differences.
We socialise through conversing with curiosity, wonder, joy and love – together!
STRETCH _ EMBRACE _ SOAR
Whether I accept this or not, or have a diagnosis or not,
it is still true,
when I feel YUK my body is communicating something isn't right.
INTRAPERSONAL CREATIVE QUEST
To love, trust, revel and lead with our beautiful autistic minds
through knowing and acting on our Roarheart
the inner inexplainable knowledge and truth
~ our intuition ~
Reflect and create a picture or journal the answer to;
Have I thought, felt, done or experienced things like this?
Share with another anything discovered in the Sacred Writing/Creating.
Do I feel YUK (something's not right) in response to some approaches people, professionals, services or therapies have toward neurodivergence/autism?
I pause with quiet reflection upon those moments and approaches where I feel YUK.
TODAY’S THANK YOU
I am willing to THANK all my regretful, angry, fearful and negative thoughts I may have.
I will trust, even if I don’t want to, all that I am aware of now, is how it is has meant to be – to be open to something new.
I am willing to put aside everything I think I know about myself/child, my life, my past and my future, to have an open mind and a new experience with listening to my body when it feels YUK with others suggestions, ideas, advice for my child and/or myself.
I am open to the possibility of embracing my body's way to communicate to me with YUK feelings, receiving new thoughts to love, trust, revel and lead with our Roarheart [our inexplainable inner knowledge and truth – our intuition] learning how to know, direct and master our individualised lives.
The Fallacy of Evidence Based Therapy