Tag Archives: autistic

Perspectives. we are NOT one big “autism family”. Still…

Two days ago, I blogged about Isabelle Stapleton.

Incidentally, there were elections in Australia with the (expected) outcome of a new government that, to be honest, has me worry A LOT about the future where health, education and the general welfare of my family are concerned. While following the events of election day, I also followed the reaction of “the autism community” (parents with autistic children, autistic adults, advocates) to the attempted murder-suicide in the Stapleton family. The ‘community’ is “reeling”. It is also divided.

In brief, some focus on the act committed by the mother (as I did in my post) others have sympathy with her and blame “the system”, ie lack of support. And now the different blocks leash out at each other.

I am writing this as a reminder for myself of what I have already previously observed : we are all different. There is no such thing as ‘the autism community’. Let’s stop pretending there is.

With the stats being what they are (let’s say 1:100 to have an international, not gender specific value), there is no way I have much in common with ALL of the autism parents out there. Other than being a parent to a child with autism, that is.
You don’t know me. We are not “in it together”.

And although I honestly appreciate the insightful blogs of adult autistics, they are not only extremely different than me, but also most probably are very different than my autistic son will ever be when he is their age.

We are all different. We see things different.
We have been through different things in our very different lives. One may feel the pressure of raising a special needs kid getting to them, others might have known the mother from the blog or IRL, so they might think “This could be me one day” (in this case GET HELP). But the other side might feel the grip of fear that eugenics is still a spectre on the horizon and the understanding that parents worldwide kill their own children with special needs is unsupportable for them – because they could be the  victims themselves.

Now as it happened, I too felt some sort of lose connection to it, and the need to comment, to reflect on it, to appeal to parents to stop seek justification for what is an act of crazy non-explainable attempted murder. Psychosis is the only explanation and for anyone who has come close to this, it has nothing to do with the reasons, but all with psyche, trust me.
And I am now over it. I can’t help the Stapleton family. Of course not. I could not then, and I cannot now. Out of respect to Issy, this should not become a political case. Her life has been too public for too long already. Think of her and her family, or pray if you do, her life is still in danger from what i know.

So we are not one big “autism family”. And that’s ok.
Let’s stop judging each other for reactions to what has happened. Look out for those who are close to you, right there and now, and maybe just ask them, are you ok? Be attentive, truly listen, find out how others really feel. Also be honest about it yourself. It is ok to say “I can’t go on no more”. Please keep talking.

ruok-day

That the best we can all do.

L’expert – c’est moi! You know best for your child.. but you don’t know everything.

When I first had thoughts that Nemo was on the autism spectrum, I turned to the internet for answers and support. I would google thoughts, questions or fragments of possible facts about different aspects of autism and then pick and read articles on blogs, forums, science health and psychology websites.. then links would lead me deeper into what I would call the jungle of autism information on the internet.

Because it’s a jungle and it has terrible predators.

I am not going to write (now) about the obvious dangers that are out there for parents who are desperately seeking for a ‘cure’, a method or simply answers in this confusing and sometimes heartbreaking journey that they have been ‘shanghaied’ onto through the birth of a child with autism.

It is no different from the quack people in our time and age will do with, for or to a cancer patient when all scientific and medical solutions have run out (sadly, sometimes even before that).
But today, two years after my first suspicions, one year after the AS diagnosis and with A LOT of internet reading, consulting, mingling and discarding on my back, there is something else that bothers me almost as much : The internal hick-hack of the autism (support) community.

First I noticed that there were parents that would post (vague) questions about this or that behaviour of their child on ASD pages on facebook or other forums. Some parent would reply by giving an insight in their own experiences, maybe some advice. Others would first ask for more detail. But the amount of people who would dish out judgement or give extreme directives to the parent in need is rather shocking. THEN there is the backlash of OTHER parents commenting back, sometimes adult autists with their own input. And back and forth.. Had I ever seeked advice on a page like this, I am certain I would have come out of it even more confused..

Now I have seen a couple of great blogs of parents that are true autism veterans and some will put lists of “things to say/not to say to an autism parent” or “10 things to know about a child with autism” and the like. These lists are the result of their long parcours of daily confrontations and frustrations and much of it is true, helpful and sometimes funny too. It would be great if the broad public moved towards a better understanding of how it is to live with autism and treat parents and children with more respect. Parents testimonies are important and must be heard.

But. Lately I have broadened my view and have started reading blogs from autistic adults. It’s been quite an eye opener. It’s true I have early discarded divers Aspie et all forums on the internet as to juvenile and ephemeral for my own taste. But some of the blogs I have come across are mind-blowingly intelligent, insightful and intense.
“Of course they are!” I hear you say. Well, take the time to really read the blogs. They are HARD to read and it’s also some very hard truths for us as parents.
It pains me when I read how many feel insulted by the way parents will impose their understanding of autism on people who have a first hand experience. From explaining to them what terms to use (autistic children vs children w autism debate) over tactless questions about pooping problems to simply telling them their sometimes combative attitude is just not helping the awareness movement. How can parents be so rude and ignorant?

Yes, times have changed and our children will most hopefully grow up more supported than those autistic children that are now adults and blogging. But we as parents need to learn how to communicate with each other to actually get support out of the exchange now possible via the internet. And we must also include those that are old enough to already have a voice.

These voices must be heard! They have much to say and we have still so much to learn.

The information and support we can access today online is a blessing. Everyone eventually finds their own balance between following the latest in science, day to day help, simple chat with other mums & dads and the some deeper exploration of certain aspects of the spectrum (or just parenting). I don’t say everyone needs to ‘study autism’ full time and yes, you alone are the first expert and advocate for your own child.
Your child that is different to any other child, spectrum or not.

louis14aftrigaud_1638-1715l

Louis XIV 

So listen to others. Ask questions that are relevant, comment always with respect and advise only with caution.

Sometimes being combatant, provocative and assertive can drive a movement forward. But there is a fine line between to being an obnoxious know-it-all who sucks the enthusiasm and willingness to share and support out of others who are pushed to the sidelines. Let’s ask ourselves daily if we are not crossing this line.
We are trying to improve the social skills of our children, we are demanding outsiders to adjust their view of autism.
I am hoping that with this common goal in mind we are not becoming a divided movement of too many camps, because it would be such a waste of energy and of an opportunity to really achieve some change for our kids.

Have you made negative experiences online with other parents or communities that you initially felt drawn to for support and information ?