So the tweet above caused a bit of a twitter storm recently….
The Autism Dad posted a poll that said…
“Today’s Autism Poll asks a very important question, has being an Autism parent had an impact on your physical or emotional health?
Before answering this question, it’s important to that this isn’t a reflection on your child. We are simply talking about the long-term impact of stress. It’s a fact that Autism parenting is among the most stressful experiences a human can endure. Some families have it easier than others, but we all face great challenges.
This poll is designed to help you see what other Autism parents are experiencing. Please answer as honestly as possible, and don’t worry about what others will think because we’ve all been there.“https://www.theautismdad.com/2017/06/29/poll-has-being-an-autism-parent-had-an-impact-on-your-physical-or-emotional-health/?utm_source=twitter&utm_medium=social&utm_campaign=ReviveOldPostThae
The Autism Dad immediately received replies to his poll tweet. The problem was he really didn’t like what was being said. Then he posted a poll he did previously which was virtually the same but with different wording..
“(Autism Poll) How often do you feel overwhelmed by all that being an Autism parent entails? Please Vote Please ReTweet 🙂 “(Autism Poll) How often do you feel overwhelmed by all that being an Autism parent entails? Please Vote Please ReTweet :-)”
clicking the link led to:
” Today’s poll is all about being overwhelmed. Please take a second and vote based in your experience. Please feel free to pass this along and help me gain more insight into the lives of Autism families. “https://www.theautismdad.com/2016/09/27/daily-poll-how-often-do-you-feel-overwhelmed-by-all-that-being-an-autism-parent-entails-please-vote/?utm_source=twitter&utm_medium=social&utm_campaign=ReviveOldPosthis –
The problem many, including myself were having with the poll was the negative wording of it. There was no reason to imply that autistic children are some how a burden. By asking if having an autistic child “impacted your physical and mental health”, or if a parent felt “overwhelmed” did just that. the wording implied hardship, burden, negative “impact”.
What I found increasingly saddening as I watched the replies come in, was the number of parents, including The Autism Dad that swore up and down they loved their children, but somehow in every comment seem to blame autism. It was “autism” that made their lives hard, that gave them stress, that “impacted” their lives so badly. It was autism that tired them out….
The Autism Dad replies;
” This is about the physical and emotional impact that the additional stress and responsibility has on the actual parenting. I’m not blaming the child at all. Parenting is an action and I’m asking if the action is having an impact. No one blames the person with Autism. “https://twitter.com/The_Autism_Dad/status/1075184775344914432
“Additional Stress”? And all along autistic people are saying over and over that the wording is negative and implies that the autistic child is a burden.
That autism itself is a burden.
The Autism Dad and many other parents of autistic children could not seem to understand that it is the lack of understanding autism and therefore the lack of support that is the “burden”. That the support given by someone,
who understands autism, to an autistic child isn’t “extra” or “more” but rather Just different. It is that lack of understanding and the following appropriate support at fault. It isn’t autism. It isn’t the child. As many autistic adults will tell you autism is certainly very much a part of their identity. In “attacking” autism, you attack autistic people. If stating how hard parenting an autistic child is, you are blaming autism. You are indirectly blaming a big part of the child’s identity and therefor the child. It is that simple.
So, let’s be honest here, globally, we don’t know enough, let alone nationally. Our understanding of autism as we know it today wasn’t established until the late 80’s early 90’s. http://stevesilberman.com/book/neurotribes/
That isn’t that long ago.
Therefore, it isn’t unreasonable to say that the global understanding of autism is still rather poor. If it we truly understood autism there would no longer be talks of “cures”, children being literally abused in the quest to make them “normal”. The entire anti-vaccination movement still pushing their agenda of antiscience woo wouldn’t exist. There would be No question of debating vaccines and the fraudulent claim that they caused autism.
Instead the focus would be rightly so on support. The right support. Soon, that support would be commonplace. A true part of society, accepted completely instead of “extra” and “more”…..
Many tweeted, including The Autism Dad, that “it was only words” and the point was ” to remind parents to care for themselves”. But that in my opinion was deflection. Words actually do matter when they are a part of an identity that society little understands and tends to demonise. Any google search of “autistic violence” will bring up the biases seen constantly. As many seem determined to link the two words. https://www.psychologytoday.com/gb/blog/abcs-child-psychiatry/201705/the-link-between-autism-and-violence-isn-t-autism
The point of “caring for themselves” can be said about all parents of all children. The poll was very specific. using the term “autism parent” made that very clear that this was directed at parents of autistic children or as they like to say, “my child with autism”. The term “autism parent” also immediately brought up “autism warrior Mom” ………… and organisations like this :
who state :
“Are you ready to put the U and I in AUTISM…?http://www.autismparentempower.org/
“I have witnessed first-hand how powerful early intervention can be. Speech, toileting, challenging behaviour all these areas can be transformed for your child with the right guidance and support.
It breaks my heart that whilst waiting lists get longer, precious time is being lost… early intervention needs to be accessed early!”
Now of course self care and routines are necessary but I always cringe when I see the words “challenging behaviour” and hear my lecturer, autistic by the way, saying ” who is it challenging? certainly not the one displaying it!” This organisation screams “normalisation” to me. To try and “normalise” an autistic child teaches them nothing but “masking”, again as many autistic adults would explain. A quick Twitter search of the words shows a lot- https://twitter.com/search?q=%23autisticmasking&src=typd
But my point is, the divide between those parents who seem so driven to normalise their autistic children , or talk about how “hard autism is”, or look for cures, or blame vaccines versus those parents, like myself who don’t. But rather have learned and continue to learn about autism, who listen to those autistic adults, as well as their children and whom not only embrace them completely as they are and most importantly are not trying to change them, but change the world around them.
So I think it’s time we focus on National autism understanding leading to global understanding. It’s time to try and close the divide. Autism advocates like myself and Autistic advocates need to come together with parents to go forward… The only way that can and should happen is with #ActuallyAutistic people leading the way…..