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 ?

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

  1. kelley @ magnetboldtoo

    When Boo was first diagnosed I went to the internet. It was my first time on the www. In 2001.

    There was very little out there and I found myself in forums and message groups and made friends with a lot of adults on the spectrum who were ecstatic to have somewhere to meet like minds. They did not understand my boy, they openly mocked me for being emotional, they accused me of not loving him for not understanding all that Autism was. We were all learning. I am so glad it is different now. The first thing I tell people with newly diagnosed kids is to NOT google it and start with their state Autism group.

    Reply
    1. nikki Post author

      That’s actually wise advice.. I did only once go to a local support group, at some point, and am planning to meet with them again (just keep missing the date). It was almost an unreal experience after the cacophony on the net : a group of middle aged and older women, tons of homemade food and stories about their kids. Some were partly institutionalized, grownups with severe autism, but others had kids in local schools and could give me lots of actual practical tips. Most were either ‘not so much on the internet’ or basically from a time where the internet wasn’t even available. It was incredibly liberating to just sit there and hear that I wasn’t the only person in the world to have gone to emergency services with a completely constipated child for example. The human contact, the laughter and the love and devotion felt for their children really made this a positive experience.
      I have seen lots of vicious exchanges now on forums and am keeping away from them. I think when autism is the ‘only’ factor people have in common to find a platform, it’s just not working for everyone and can actually do more harm than good in some cases. Things are changing but we are all still challenged to make it work..

      Reply
  2. Pingback: Autism : “language matters”–yes indeed. | Suburp

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