Recently there has been a rise in the number of sites posting anti-parenting slogans against those of us who are parents of children with Autism. I’m guessing this is due to the fact that April is Autism Awareness month.
Such slogans all carry the same basic message that we as parents all need to “shut up’, “pull our heads in” and “stop trying to make our child’s Autism all about us”.
Personally I find these kinds of attacks on parents offensive.
I understand that many of these slogans are being created by adults with high functioning autism and I also understand that in creating these slogans they too are pushing their own agendas.
Namely being, that only those with autism should have the right to discuss, weigh in on, or decide the appropriate rights and treatments for children with autism.
And to a large extent adults with autism have every right to both feel this way and express their own views regarding what many of them have lived through first hand, as appropriate ways of treating children with Autism. After all they were all once children with Autism themselves so they should know what worked for them and what didn’t.
I’m also a strong supporter of Finkelstein’s 1976 statement regarding the redefinition and the rights of those with disabilities which states that there should be “nothing about us without us”.
However Finkelstein was referring to the rights of adults with disabilities to speak for themselves within both the political and academic arenas.
He was in no way claiming that the needs of children with disabilities should be decided by people other than their parents.
Finkelstein was also referring primarily to those adults with physical and not cognitive disabilities when he penned those famous words.
As such, at the time, he did not specifically have the needs of those with Autism in mind. Nor could he have, given the then relatively low incidences of Autism being reported way back then.
In truth, the biggest contributing factor toward the significant rise in Autism awareness over the last 5 decades has not come from adults with high functioning autism, nor from any magnanimous sharing of Autism facts by professionals, rather it has come from the hard-fought efforts of parents of children with Autism.
From fathers such as Bernard Rimland who single-handedly, took on the many prejudiced and erroneous assumptions regarding the causes and therefore the treatments of children with Autism.
And in fact, if it weren’t for the work of Bernard Rimland who was both the parent of a child with Autism and a psychologist who had both the courage and the fortitude to stand against the ravings of men such as Bettelheim who claimed that the causes of autism were due to either cold or neglectful parenting skills, such as the “refrigerator mother” theory, parents of today may still be being blamed for their child’s Autism.
In 1964, Bernard Rimland published, Infantile Autism: The Syndrome and It’s Implications for a Neural Theory of Behavior. Rimland stressed the plausibility of a biological basis for autism.
The publication of Rimland’s book marked a turning point in our present understanding that autism is a neurological disorder. He therefore effectively showed that parenting styles have nothing to do with the causes of autism.
Thanks to this forward thinking father, many children with autism, who may very well be part of the wave of modern-day adults with high functioning autism now criticizing parents, have ironically been saved from undergoing years of pointless and often cruel psychotherapy and psychoanalysis.
All due to the fact that one parent, Bernard Rimland, strongly insisted that Autism was a biological disorder and not an emotional illness (Health Counselor Magazine, Vol. 3 No. 6; June/July 1994).
So you’ll have to excuse me if I find it incredibly shameful that the same adults who may indeed have benefited from the wisdom, knowledge and the perseverance of the parent of a child with Autism who insisted that he knew his child better than anyone else and that all previous understandings of Autism were not only wrong but dangerously and harmfully wrong, are now the very people insisting that such parents should “shut up”, “pull their heads in” and “stop trying to make autism all about themselves”.
Just think for a minute where we’d all be if weren’t for the work of a parent like Bernard Rimland who was initially laughed at and mocked by his colleagues and almost went broke trying to prove that his parental perceptions of his child’s needs and behaviors were right and that they arose from a neurological basis instead of either a mental or emotional illness.
And then try telling me again why parents of children with Autism need to “shut up”.
Truth is we don’t. Parents of children with Autism as a collective have done more to create positive outcomes for their children than any other group on this planet.
They have raised levels of awareness regarding both the increase in rates of autism and the urgent need for the understanding and acceptance of people with Autism in our communities exponentially.
As such, parent’s have well and truly earned the right to speak within the Autism community.
They’ve done far more good in terms of assuring that the human rights of children with Autism are being upheld everyday at every school gate, college, university and work place, than any other group and all whilst being held up for criticism at every turn.
So please, don’t tell me as a parent to “shut up”.
After 16 years of non stop fighting for the rights of my child, I’ve well and truly paid my dues.
And don’t even think about trying to tell me that when ever I have fought for my sons rights that I’ve simply been trying to make his Autism somehow all about me.
Really, ideas like that are no better than the now defeated refrigerator mother syndrome that Rimland laid to rest.
And worse still, please don’t for one more minute pretend that you will be there should I fall down or be unable to continue to make sure that my sons needs are met in every way on a daily basis, because I know, that you won’t be.
So what gives you the impetus to decide that you have a greater understanding of what my child needs, in every way, than I do?
Yes you may well know better the experience of living with high functioning autism, but guess what? My son may not be as high functioning as you? So what then? Do you have the same patience levels as I do? Are you up for the challenge of trying to communicate with someone who won’t or can’t talk to you?
Could you do any better if you were to walk every day in my shoes?
In short, we parent’s do have our roles to play within the Autism community just as Adults with Autism do as well .
We all have worth and we have all, one way or another, well and truly earned the right to speak.
So what gives you the audacity to try to take our parenting rights away from us by telling us constantly that we don’t know what we’re doing?
You’d be the first to scream if we tried to take your parenting rights away by telling you how you should raise your.
So why try and take from us the very things you seek to achieve for yourselves?
It simply makes no sense at all.
Especially when so many of us, as parents, over multiple generations, have been so busy fighting every day to make sure that your rights to be heard continue to be respected?