A couple of posts in a forum in a thread in a social media group got me passionately thinking about two things. The first the idea of autism winning and the second about being normal. The two obvious questions for me are, what do you mean autism is winning is it a race or a fight or something? The second, whilst a cliché, is still very relevant: What is normal meant to be anyway. My good friend and fellow writer Emma has written about it here.
It is my belief that the two threads in question were posted by parents who care deeply and love their children profoundly. Unfortunately, this love and care make the issues raised no less damaging and debilitating for the autistic children involved.
The first thread simply said autism is winning in my house today. I didn’t follow this thread as it made me quite angry. I can’t speak to what was said in the thread or how it proceeded. What I can say is that I have often seen in this particular group a motif and theme of a battle against autism. Unfortunately, this is a perpetuation of negativity and lack of acceptance of autism and neurodiversity generally.
A massive question that must be asked here of people who run with this line of argument or thought is what do you think this says to your autistic child? What statement is it making to them and about them about what you think of them?
I wonder if this is due to a fundamental lack of insight by the non-autistic parent about their autistic child. I don’t mean this as an accusation but as a question. It seems to me that one can be armed with tomes and reams of information about a thing but fundamentally fail to understand it. I am not convinced one must be autistic to understand and accept it. I know too many non-autistic people who do, like my wife, Andrea, who is completely accepting of neurodiversity and others such as representatives of the AutismCRC and the chair of its Board Judy Brewer and the research academy team members Olivia, Sylvia and Wenn. Wenn being the only actually autistic team member.
It seems almost as if one needs to be autistic to truly understand though the damage the repetitive and relentless narrative of the battle against autism and the fight to have a “normal” child can be.
I implore you stop for a moment and imagine if the predominant message you as a child hear or see in word and deed is that your fundamental way of being is experienced as something that must be defeated. Take a moment and think about that, please. If you are able to manage to imagine what that may feel like try to add to that how it might feel to add-on top of those feelings an experience of constantly being asked to be normal, to be more like other kids, to be like your brother or sister. In effect to not be you.
I grew up as an undiagnosed autistic. I had my fair share of difficulties with school and bullying and finding my way. One thing I did not experience was the battle or fight against autism. I experienced it as more a fight or battle against who I was. I think and believe this is a similar thing. So often I was compared to my sister and declared wanting. So often I was yelled at, screamed at, hit and so forth. I was blamed for creating the situation that resulted in the adults in my life exacting brutal punishment on me.
Don’t think I didn’t try to be normal. Don’t think I didn’t try to be what I wasn’t. I did. I tried with all that I had. I joined the social groups and activities like team sports and Scouts and other activities. Church based and Secular based activities. I tried to fit into the cookie cutter model that was held up as the ideal. I failed.
I failed because it was not the ideal for me. It was me trying to be something that I was not. The result that I was always the outsider, on the edge of the group, the fall guy when there were problems. Does that mean there were no fun times and good parts of this? Certainly not, in fact, there were many, but, those good times would have been possible without the overall time being a hellish experience of knowing deep down that I was different, that I didn’t fit in, and that what I was was fundamentally wrong in the eyes and beliefs of those around me.
And that there is the rub, I believe. That there is the most damaging part. The narrative of so-called normal, the narrative of battling or fighting to defeat autism tells autistics that they are believed to be fundamentally wrong. Not just different, but wrong. I promise you we already know we are different. What we need to hear and see is that those around us accept that we are different That those around us can embrace, celebrate and love us not despite that difference but with that difference.
Yes, autism is winning in my house today, and that there in itself is a bloody good thing! I hope it continues. I hope it is the case every day, because when autism is winning in my house it means me, my autistic children and my allistic wife and child are all loved, celebrated and accepted together and individually for exactly who and what they are.
Autism is winning in my house today and ain’t that grand!!
Some people are able to accommodate the more obvious aspects experienced by autistics such as sensory difficulties or other matters that may be addressed practically… materially/materialistically/ organisationally but may falter in the actual personal interrelationships with the autistic individual This is often a by product of the ” fix” it attitude which is best converted to ” prevent” negative experiences for autistics ,the latter is both admirable and desirable.
The non autistic may say ” but what about us/me?” why do we have to accommodate .. seeing it as if all the accommodation is made and expected by them FOR the autistic… they cannot see how every minute of every day
the autistic is confronted with having to accommodate to a ‘ hostile environment” apart from the times he/she removes to recover in a more isolated environment .
It is in the realm of personal interrelationship between an autistic and non autistic that the inabilities to understand manifest due to the obscuration of the unseen autistic disabilities … relating ” about autism” can get in the way of actually recognising the autism of the autistic individual with whom they are relating. Particularly so if the autistic person can speak /write with a reasonable degree of eloquence… it may be that communicating orally or in writing at all may be enough to obscure awareness of the autistic nuances and thereby, unwittingly placing the autistic in a vulnerable position and the non autistic mentally and emotionally reverting to a full on Neurotypical stance/ demeanour…. unsuitable for a profitable relationship .
Winning and losing are terms that present problems to me as it reinforces the ” us” and “them” modality over “understanding”… I say this with mind to mutual understanding… not pitting division…. it is problematic to view life in terms of ” competition” …. I feel that this is what you were alluding to in the post by the mother regarding to ” autism winning”… giving a negative message to her autistic child.
Whereas it may be preferable to say ” Autism has a comfortable place in my/our home” as a positive, unambiguous and non emotionally loaded statement.
I feel that for an understanding of autism to be successfully achieved it requires people really attend to “seeing ” the individual, appreciating that what one says/does will not necessarily be understood by the other and even more so when at least one of the people is autistic … this is equally important when we as autistics relate to each other … Patience and Respect accompanying keen sincere interest will promote true “listening”.. ” ‘active listening” in autistic and non autistic alike forming the basis necessary for “understanding”… Understanding each other as people Autistic and Neurotypical, Autistic and Autistic , Neurotypical and Neurotypical alike. A recognition of our common Humanity.
What do you think?
I don’t understand what you are trying to communicate to me… I have read your post and I as another autistic am at loss . I’m not sure if there is criticism here or statement.
I do not understand what is being communicated… I’ve read the Trackbacks/Pings mentioned above. Is it a statement, agreement or criticism or non of the afore mentioned?
Guess I’ve displayed my unfamiliarity with the medium of the Blog. One step further along the technological road .
My initial Comment reflects how I see/experience the chasm of ignorance regarding autism… I have no children so can’t relate to the same situation, am loathe to revisit my childhood experiences in the family home or this current in family dynamics.
My partner has demonstrated no active interest in understanding autism… sees it as my problem … so I guess Autism is the Ghost in the house … making Shutdowns and Meltdowns aberrations … painfully alone.
taken on board… the result … greater feeling of isolation.
Thank you for your comments. I agree with your sentiments. The idea of winning was not really in relation to competition but in relation to acceptance. The use of the winning theme was in relation to a particular post as representative of many posts in a particular autism “support” read parents whining group.