Feb 4, 2012

Where I Admit I’ve Been Lying to Everyone

326902_2627453812294_1433783679_32171957_381691620_o

I’ve decided it’s time to come clean and admit the truth. I’ve been lying to you all. Yes, I know, shocking that a person who makes stuff up on a daily basis would lie. However, there it is. I am a big ole fake and this is where I make my apologies.

You see, for years I’ve been telling my family that my son, Eric, is autistic. Heck, I’ve even told Eric. Now it’s time to come clean and tell everyone it isn’t true.

I’m going to start with my parents, to my mom for the added stress of attending assessment meetings with me when she was going through treatments for a heart condition and should have been resting, I’m sorry. To my dad, I’m sorry there really was no need for you to take early retirement, when Eric was expelled from Montessori school and no-one else would mind him while I worked.

To my brothers and sisters, especially my youngest brother. I’m sorry for all those times family events that had to be organized around Eric so that he wasn’t put in situations he couldn’t handle. I’m sorry for all the gifts you all bought for him and he wouldn’t accept because it wasn’t quite right or tossed aside without so much as a glance. I’m sorry Eric lashed out at you, or that you had to watch him physically carried to the bus against his will when he had to go to school. Or that you had to be the one to carry him screaming when I couldn’t. I’m sorry he asked inappropriate questions or demanded we all concede to his plans. I’m sorry for the pain and for the tears and stress.

To the friends I basically cut out of my life. I’m sorry, my every spare second was taken up with caring for Eric and I couldn’t find time to do the normal things you wanted to do. That I had to cancel nights out at the last moment or that Eric’s behaviour embarrassed you.

To my work friends who covered for me so I could attend appointments, to Eric’s teachers, the psychologists, psychiatrists, therapists, doctors, nurses, teachers assistants, taxi drivers, Special Olympics volunteers, all those other volunteers who have graciously given their time and energy to helping Eric and me. I am sorry.

To the business man on the flight from Spain who called Eric a brat for ‘flapping’, I’m sorry my partner stood up in front of the other passengers and calmly explained Eric is autistic. I’m even more sorry Eric took it upon himself to call you sir and apologise for disturbing you, since apparently it was all my fault.

To the guy who let a roar at me in the shop on the day of my mother’s funeral when Eric didn’t respond to my calling his name. Well, it turns out you were right to chase me the length of the shop and call me a bad mother. As it turns out, I am. Unintentionally of course. As it turns out, Eric didn’t get enough attention to develop like so many of his peers. He isn’t autistic, he simply needs more hugs.

How do I know this? Well, some research boffins have decided that autism doesn’t exist… no wait, before you start laughing, this is the absolute truth. Autism is a mythical disorder. Mythical, as in unicorns. Of course when I compare it to unicorns we can all see how ridiculous the idea is. So what prompted my apologies?

The Irish Examiner printed an article today by Dr. Tony Humphreys, a consultant clinical psychologist.

So far, I’ve been unable to find this article on the Examiner website. Here is the link to the article on the facebook page of Irish Autism Action, along with a scan from the newspaper.

In the article that reaches back through history and comes close to the idea of the ‘refrigerator mother’ , Dr. Humphreys discusses studies into the link between high achieving parents and children with autism. 

“Children's wellbeing mostly depends on emotional security - a daily diet of nurture, love, affection, patience, warmth, tenderness, kindness and calm responses to their expressed welfare and emergency feelings. To say that these children have a genetic and/or neurobiological disorder called autism or ASD (autistic spectrum disorder) only adds further to their misery and condemns them to a relationship history where their every thought and action is interpreted as arising from their autism.”

While the mother in me appalled and furious that an article like this would ever see the light of day, much less in a respected Irish Newspaper, the writer in me doesn’t like what he has to say but will defend his right to say it. I do not have to agree with it and would like to see the Irish Examiner offer an article from someone with equal qualifications with a rebuttal. Otherwise, they are looking at losing the respect of the parents of ASD kids and many adults with ASD.

“Sami Timimi, a consultant child and adolescent psychiatrist and two colleagues rigorously examined over 5000 research articles on autism and ASD and found no scientific basis for what they now refer to as mythical disorders. They outline their findings in their book 'The Myth of Autism' (2011). The conclusion of their indepth studies is that "there is no such thing as autism and the label should be abolished".”

As shown on my twitter feed and facebook feed, others with ASD family members struggling for services, having their benefits cut and medical taken away do not agree with the article. Dr. Humphreys would apparently like us to believe that’s because they, as carers, need to deal with their issues and not because their child has a neuro-development disorder.  

All I know is, my son is on a daily diet of nurturing, love, affection, patience, warmth, tenderness and kindness. I am calm and collected in dealing with him. I am an angry lioness when it comes to his care and well-being. He is my world.

I must thank Dr. Humphreys, because the last few months have been particularly hard and I’ve felt the constant up hill struggle against ASD, the lack of understanding from the general public and the prospect fighting for every little thing had finally worn me down. Tonight I feel invigorated and prepared to fight on. I’m ready to tackle the prejudice that still exists against my son and against me as his carer. 

I am the mother of an autistic child, not a unicorn.

Update: 09/02/2012

Simon Baron-Cohen of Cambridge has publically stated he doesn’t support the article.

Per a interview on RTE Radio One, Dr. Sami Timimi was not contacted by The Examiner or Tony Humphreys and has stated the quotes used from his book were taken out out context. He does not support the claims made by Tony Humphreys.

Per Dr. Dr Michael Drumm, the president of  THE PSYCHOLOGICAL SOCIETY of Ireland:

“Tony Humphreys’ assertions made in the article are not supported by the vast body of published research in the field of Autistic Spectrum Disorders and are unhelpful and likely to cause upset,” said Dr Michael Drumm, president of the PSI.  ”It is hoped that the article would be retracted”.

11 comments :

  1. *sigh* Frustrating! So sad they are THAT CLUELESS. In the states, we are reclassifying autism and painting a new face on it, so only the kids that are severe will get diagnosed. The rest, like my son, will get lumped into a nameless group where, if this happened to us now, we wouldn't have gotten services. Who knows where he'd be... if he'd even be verbal. All under the guise to say ... "See? We don't have a problem. Autism rates are going down." *huffs and cusses* Ridiculous. Hugs mama. You deserve an award!

    ReplyDelete
  2. You tell 'em Carol!! What an ass! Some people should not be allowed to call themselves doctors regardless of their degress! I know you are an amazing mother and you love Eric fearlessly! That Dr. Humphreys can go to hell!

    ReplyDelete
  3. Hi Carol,

    I think you might have been a little angry in this post. Just a guess. A tad furious? There is so much misunderstanding out there, and I hope your post can enlighten some people. Keep the fire burning, chica.

    ReplyDelete
  4. Thank you for stopping by ladies. :)

    Brenda, what you describe is pretty much the same thing happening here. Parents are stressed out beyond belief. If Autism was Eric's only issue, he would have been in mainstream, as it was I had to push for a special school. I don't know what way he'd be now if I didn't. His school have been a lifeline.

    Emmie, as always, hugs. :) I actually have half wondered over the day if Dr. Humphreys was being intentionally provocative since the article is relevant to his book. The cynic in me thought, 'promo'. Either way, he's entitled to his opinion, although it's honestly sticks in my throat to say that.

    Jen, I had calmed down before I wrote the post. Ten breaths and don't hit send in anger and all that. lol As usual I started out offended and angry for myself, but gotta be honest, as bad as I have it, many of the families in my support group are having a much harder time than me. By the time I calmed I was more annoyed on behalf of Eric and kids like him. Because if people believe this, it's those kids that lose. I wanted to make an impact with this post. I think it's just unusual for my sardonic side to make an appearance on the blog. It makes plenty of appearances in real life. :)

    ReplyDelete
    Replies
    1. Carol, you certainly made an impact on me with this post. I have friends with autistic kids in Dublin and I'm linking your post on my FB page.

      Delete
  5. Holy Cow! I can't believe that someone would even THINK that. I am amazed at how clueless some people really are.

    ReplyDelete
    Replies
    1. It's pretty shocking that some people don't believe the evidence in front of their eyes.

      Delete
  6. I'm cynical too - but even if it is an attempt to get publicity for his book/speaking engagements: it is a pretty disrespectful way to do it and The Examiner did not print it as an opinion piece - at least not on line.

    Apart from the obvious chicken/egg reversal assumption, as in "what came first, people with autistic tendencies becoming brilliant engineers/programmers/scientists then meeting other brilliant people and having children with autism- or children with autism having technically brilliant parents" he has also missed the strong emotional connections that do exist between parents and their autistic children.
    And as my husband bluntly pointed out when we discussed it - the children of crack/scag/meth heads who ignore them do not all grow up to be withdrawn emotionally- despite the lack of parental nurturing.

    I'm also worried that people will read this and assume that autism is no longer eligible to be considered a real disability - and that families of autistic children should no longer be eligible for disability supports like Carer's Allowance, DCA and home help.

    It's just a hideously insulting exercise by all concerned. xx

    ReplyDelete
    Replies
    1. I agree with everything you say. Sadly autism is being pushed out as not meeting eligibility for supports. It's terrifying to think of what will happen to kids who don't get the help Eric got. I fear for his future as and autistic adult. If it's considered not a real disorder, what will be expected of him?

      Delete
  7. Very good suggestions, well done. Thanks for info for making the honest try to explain this. we back. Thanks again

    Bruno Montessori School Birmingham AL

    ReplyDelete