Stupefied, dismayed, surprised, unable to comprehend, the sheer arrogance, ableism, and self aggrandisement that is present in some. The some I refer to are those parents, carers, siblings, whatever, of autistic people who are convinced they know more about autism than anyone on the planet, more than the professionals, more than the researchers, more than the therapists, more than the paediatricians, more than the psychologists and psychiatrists and most astoundingly more than the actually autistics themselves. To be perfectly honest I just don’t get it.
To be perfectly clear, I am not talking about the carers, parents and family who embrace neurodiversity, are totally accepting of their autistic loved ones and have the aim of ensuring that their autistic loved ones do not have their voices silenced, are not seen as burdens, are not seen to be lost and locked away. They do in short, fully accept their autistic loved ones for who they are and what they dream and seek to be.
But yes honestly I just don’t get it. I just does not add up, and it makes no logical sense at all. Excluding being actually autistic and living neurodivergent for your entire life, or having a career in a professional capacity of assisting autistic people, how can one possibly have the sense of grandiose to actually believe they are better equipped to speak for, make decisions for and pronounce right and wrong about the life, the well-being, the future and the possible therapies for the autistic person.
This is not a question of how well you know your child or loved one, the assumption here is that you do. But you do not know them and their life better than they know themselves, and you really don’t know more about autism than what the professionals do. It really is that simple, yes absolutely you know and love your loved ones to the end of the earth and back. But no if you are not autistic then you are not autistic and as difficult as this may be to hear you do not have the lived experience with autism to be making statements about what is right and wrong that an actually autistic person does.
That there is another thing. If you are not autistic you are not living with autism. There I’ve said it. It’s a truth. The only way to live with autism is to be autistic. What you are doing is living with someone who is living with autism. It may sound like splitting hairs but it is not. It is far more than a simple playing with words.
I implore you to hear this. If an autistic asks to be heard about issues that effect them, listen, please. It is most likely they have more insight into the situation than you do. It comes with having the lived experience. So please take heed, and understand:
- If I choose to identify as autistic respect it, don’t tell me it’s wrong or offensive or I should use person first language. Or perhaps you would prefer to be called a person with neurotypicality?
- If I choose to say I am proudly autistic, don’t tell me it’s nothing to be proud of. It’s my choice to be proud of what I want to be proud of.
- If an autistic says they are overloaded, or not coping, or need to get out RESPECT that, and don’t please, never, call on them to just suck it up and it will be okay. It most likely won’t.
- Don’t pay lip service to sensory issues. They are real and they are debilitating.
- Don’t disregard the voice of autistics and the insight they might have into what may be going on for your child on the basis of them not speaking for your child. Of course we don’t speak for your child. We do however know what it’s like to be autistic, you do not. As much as you love your child, as much as you know your child, you simply can’t, it’s just not possible, to have autistic lived experience unless you are autistic.
- If you think the actually autistic adult is too high functioning to understand your child, banish that thought to hell, it is misinformed, wrong, and totally unhelpful and highly offensive to the autistic person that has taken the time to actually try to speak with you and attempt to help you be the best you can be for your autistic child.
There are a few items there, not many. And yes this has been a somewhat angry post. Somewhat of a rant today. Yes. I accept that, and yes I am prepared to be taken to task possibly. Unfortunately it has been prompted by seeing autistic friends being told they are wrong about how everything autistic in a very unkind and hurtful way by a so-called autism mom. Not just told they were wrong but ridiculed and defamed.
I still just don’t get it. How it is that these people, who claim to love and want the best for their autistic children feel it is reasonable, acceptable, or okay to disregard, treat unkindly and attempt to silence the voices of actually autistic adults.
An amusing thought to finish with. I would like to credit it but I can’t for the life of me recall whose comment it was, but here goes. How is it that so often those who take autistics to task about Identity First Language and insist on Person First Language when referring to their children so proudly label themselves as ‘Autism Moms’! Go Figure!