Saturday, April 3, 2010

To cure or not to cure..... That is the question...... Or is it?

After a whole day of staying UNUSUALLY quiet on a very very hot topic in Australia yesterday after a national morning television program featured a mother who claims to have cured her son's Autism, I have considered my response carefully and I am posting it here.

Australian mum, Vicky Leon appeared on Australia's Sunrise program yesterday and discussed the dietary and biomedical interventions she had put in place for her beautiful little boy, Nicholas.  see here for the full segment  Prof Kerryn Phelps, president of  The Australasian Integrative Medicine Association (see here for more info about AIMA) also appeared as the segment expert and backed up Vicky's approach to treating her son's Autism and explained how many symptoms of Autism will ease by implementing appropriately supervised (by a specialist paediatrician) dietary changes and vitamin and mineral supplements with a focus on reducing toxicity after a series of medical tests have been performed to properly gauge what dosages are required according to the individual child's blood, faeces and urine results.

I watched with interest as my sons follow the same dietary guidelines and are treated under the very strict supervision of a specialist biomedical paediatrician who is part of the MINDD foundation.  MINDD Website link here 

Here is a very short outline from the MINDD website to explain the philosophy behind the practice: 

"The MINDD Foundation promotes an integrative approach to healthcare for the whole family with a focus on biomedicine, nutrition, neuro-development and allied therapies. We help practitioners and patients find effective treatments for Metabolic, Immunologic, Neurologic, Digestive, Developmental conditions that often affect the mind. "

As I watched Ms Leon talk about the biomedical practices and the changes she saw in her gorgeous little guy it was like I was hearing my own sons' stories to be honest except for one thing.  Whilst I recognise that my children have come an incredibly long way, are coping better with comorbid conditions like the anxiety associated with Autism, progressing to having advanced language after an initial quite marked speech and language delay (in Jackson, not so much with Hunter who has had very good speech all along) and their classic symptoms like flapping, toe walking and other stimming (self stimulatory behaviours) have all but disappeared.......  I recognise all of this and celebrate the progress we have made every day.... The one thing I do not recognise or agree with is Ms Leon's use of the word "CURE."  I also strongly disagree with Prof Phelps' decision to appear on the program and not address the usage of that particular word. I feel it was irresponsible to use such a word as many parents in the thick of an Autism diagnosis will be given misleading hope and in this case I truly do not believe it is just a case of semantics.  I dont believe that Autism can be cured.  Ms Leon, stated her son had very few symptoms associated with Autism anymore, attends a mainstream school and has lots of friends, improved language and eye contact as her basis to back up the claim of curing her absolutely gorgeous son, Nicholas.

My children are all set for mainstream school, have excellent language, barely any classic signs of Autism anymore like the stereotypical lining up toys, greatly improved eye contact (that old chestnut of controversy in diagnostic land) and both are very engaged in our family and friend's worlds.  


NO WAY!  Autism is so much more than eye contact, stimming and lining up toys. So so so much more hence the term, Autism SPECTRUM.

Both of my sons have residual issues like difficulty in crowds, social situations, sensory sensitivities and although they can blitz an IQ or language test they have lingering perception and processing problems that will probably remain with them for life.

The amount of times I've heard statements to this effect, "Oh my God, they have Autism?  You can't tell they have Autism, they don't look like they have Autism!"

My question is WTF does Autism look like anyway?

Surely we are now past the entire world thinking Rainman's Raymond Babbit is the only presentation of Autism? Apparently not in many cases.

I am all for parents trying out any type of safe treatment approach when tackling the tricky and mysterious spectrum of Autism related difficulties that are present for the child in question and as I said, I am a happy passenger on the GFCF (gluten and casein free) biomedical train. 

When I heard about this so called miracle cure for Autism when Jackson was first diagnosed I jumped aboard that train at the first biomedical station and have been holding on to my seat on this unpredictable and terrifying track that is our own Autism journey for grim death.  Did I want a cure for my son back then?  Yes I did.  If any of the numerous "experts" I saw had have told me I could cure him by standing on my head, clapping my hands and playing the William Tell overture on the piano with my toes simultaneously, by God I would have done it and I would have done it to perfection so I could never ever look back and wonder if I had really tried hard enough to cure my boy.

The day after diagnosis, I read actress, Jenny McCarthy's tale of her son, Evan's recovery (she does not use the word cure contrary to public perception) from Autism called Louder Than Words see here in one sitting over the course of two life changing hours.  I closed the back cover of the book and proceeded to find my local MINDD Foundation doctor and I begged for an appointment as though my life depended on it.  It did.  My son's life depended upon getting into this miracle doctor as far as I was concerned.

I took my son to that doctor with the express purpose of getting him cured.

How ignorant I was.  How blissfully unaware I was of the complexities of Autism and also the gifts and a life of true beauty that can be possible within a life with Autism.  

I no longer aim to cure my son.  I understand Autism better now.  I aim to reduce the difficulties my children face with such a diagnosis (including the digestive issues they had pre GFCF biomedical treatment that affected their behvaiour, attention, language development and mood regulation).  I aim to raise awareness for them and help make the rest of the world more accepting of their probable lifelong differences.

It's been my aim all along to avoid any pharmacuetically based treatments and via biomedical treatment we have so far been successful and have yet to require any kind of medication for either child. It is important to never rule any option out though and I accept treatment is as complicated and as my children and will require constant review.  Biomedical has indeed been life changing for our family.
It is not a cure though.  I doubt it ever will be and I doubt I'll ever have that aim again anyway.  This mode of treatment has been enormously beneficial in my house but it's not the same story for everyone so I respect those who choose not to follow this treatment plan and would ask for the same respect and courtesy with regards to how I choose to help my sons be the best they can be.  Not be something they are not but be the best they can be.

Each parent sees things differently and the controversy this segment brought up on the social media sites I frequently hover around on getting tips, ideas and make friendships with others in the Autism world was massive.  see here for Vicky's Facebook page   I was a little shocked to see some of the comments from friends of mine judging Vicky Leon's decision to treat her son with biomedical practices and I was aghast to see one of them publicly denounce anyone who would put their child through a bloodtest to find out the appropriate dosages for such vitamin, mineral supplementation approaches.  I admit that the five minutes of trauma during J's blood test was harrowing.  I cried and wondered if I was doing the right thing whilst he was crying during the test.  However, the previous months of anguish, meltdowns, communication breakdown and for me a near nervous breakdown because of my inability to cope with these issues was far more difficult than the one blood test my son was subjected to in order to correctly analyse his treatment needs.

I personally (and it's different for every parent) felt far more comfortable with this responsible approach to putting anything new into my son's fragile system than the previous paeditrician's casual scribbling of a trial prescription for three different drugs to just "have a go at making him a bit more normal before I see him again in 6 months."  Yes, that is a true story.

We are under the very strict supervision of a world recognised expert in the biomedical field and the results have been fantastic for J and H who both seem much happier and more able to cope with the confusing world they live in and no longer live with excruciating gut dysfunction which is reason alone for our family to continue with this approach in conjunction with specialist sensory integration play based paediatric occupational therapy see here.

I repeat though.  They are not cured and nor do I want them to be.  I don't believe Autism is a disease.  I believe Autism is a way of thinking differently.  I believe Autism is an always complex and sometimes wonderful world to be a part of.  I think trying to cure my sons would mean I am trying to change who they inherently are.  This does not interest me as I love them exactly as they are but admit to thinking their path is more challenging than others because of some of the associated Autistic issues so instead of trying to change them or cure them, I am trying to help them overcome some of those issues.

I guess I now believe Autism is actually a way of BEING.

To cure or not to cure was my original question.  I think I'll draw upon the genius of one of my favourite, complicated and quirky authors, William Shakespeare who happened to create a rather indivdual and complex character called Hamlet and quote him here as it's so appropriate.  I change my question now to Hamlet's quandary, "To be or not to be?  That is the question"

Yes, to be or not to be?  That is the real question.  If Autism is a way of being, I choose TO BE for my boys and I think they would to.


  1. So well said Chantelle.. Diet didnt work for my child but I am happy to cheer on any parent who wants to try it to "help" their kids not to "cure" their kids.
    As loving parents we do everything we can to help our kids to thrive and if its diet then so be it. But at the end its about unconditional love and the acceptance of that not everything works for every child.. Love it...

  2. Hi Chantelle, you write so beautifully. I have always been amazed at the different ways in which people perceive autism and autism spectrum and I always come back to the same point of reference for myself - the label is based entirely on a collection of behaviours so it subject to individual interpretation. For me, looking beneath the behaviours led me to the conclusion that autism is a collection of illnesses, thus the success we have had with biomedical intervention. But that is not the case for everyone, as you have stated. That has led me to believe that some of those "illnesses" beneath some of the behaviours in some children were, in fact, hard-wired, for want of a better way of putting it, and some were actual illnesses which could be cured before the behaviours became part of the child's personality. So, just as there is a spectrum of behaviours which define autism spectrum, there is an underlying spectrum of curable and incurable physical states of being. To be frank, I do not believe that because someone is displaying autistic behaviours means he or she is automatically autistic, and I don't believe a diagnosis of autism should be given until any physical illnesses/abnormalities are "cured" and the consequent behaviours ruled out of the equation. But that's just me. Keep up the good work.

  3. Hi Chantelle,
    It is good to hear someone voice what needs to be said.
    I have the big issue that the government is not supporting the kids at school. Largest social environment and the kids are slipping thru the cracks. Can we join up and push the governments to fund more?
    Do you know how to start a petition on this matter?

  4. Hi Chantelle,
    It is good to hear someone voice what needs to be said.
    I have the big issue that the government is not supporting the kids at school. Largest social environment and the kids are slipping thru the cracks. Can we join up and push the governments to fund more?
    Do you know how to start a petition on this matter?

  5. So well said Chantelle, I think its a shame that when a mother of a child with Autism goes in the public eye they get slammed by others. I'm sure her main aim in going public was to help others and raise awareness. We need to remember that she is just a mum and won't always word things perfectly and maybe the word 'cure' is a bit incorrect, but none of us are perfect. The doctor on the other hand should know better. But hey, what she said just might help other people become aware of biomedical interventions and the possibility of improving language and behaviour etc. I'm sure if I was every on TV i'd probably freak out with nerves and say all the wrong things haha. If I had the kind of success that she has had though, i'd want everyone to know too. Hopefully that will be my story oneday.

  6. Do what works and what makes the kids happy and the family no one is in a place to judge. Well said Chantell

  7. My son William was (in my eyes) progressing normally... running at 8mths - just like his 2 BIG brothers, he was chatting and had imaginative play just like his big sister.

    20mths we started to lose him... lack of eye contact, bowel movement every 7-10 days if lucky, low immune system (constantly sick – asthma, ear infections, chest infections), loss of speech, silent seizures, he would scream and hit his head when you tried to speak to him, non responsive to his name, extremely pale, black circles under his eyes, sensitivity to touch (no one could touch him), rocking, tip toe walking, anxiety - fear of crowds and noise, irregular sleep patterns etc. It was a total nightmare, I had lost my baby boy )-:

    My story is very similar to Vicki’s and Chantelle’s ... I strongly feel this information needs to be put out there and television is a brilliant median... yes the word CURED! certainly gains attention, perhaps that was Vicki’s main intention?? I don’t think words of recovery or cured should be the main focus here. I’ve attended MINDD seminars and sat beside women who were in tears because they didn’t know a path to wellness even existed. For so long too many GP’s & Ped’s have looked at us like we’re fools, offering Antidepressants to us mums cause our children will be like this forever. We need to push the barriers for people to stand up and take notice. Australia needs to acknowledge we have a major problem in regards to the foods we’re eating, the air we’re breathing, the water we’re drinking... is it too much to ask that we provide our loved ones real food and pure water.

    I’m not one to get into the term of cure-or-not-to-cure Autism... I simply wanted my son to become well again; I wanted to see his personality reappear... I wanted my baby boy to come back to me. I can honestly say, thanks to the Mindd Foundation - we now have a diet which promotes wellness; we were referred to a DAN!(Defeat Autism Now!) Doctor who prescribed a Biomedical Approach for my son’s particular needs. Over a short period of time the clarity returned, the fog had lifted; he was able to learn again. This was the light at the end of the tunnel... it enabled us to actively start Intensive Early Intervention with AEIOU.

    William will be 5 this July and what a total turn around, he can now hold a conversation, he’s constantly asking questions even arguing (ahhh), he is coping better with social concepts, and most importantly (to me) he expresses his feeling very freely. All classics symptoms of Autism have almost disappeared.

    We have not looked back. His latest request- a Batman DS and a Sharkboy Costume for his birthday xx

    Rhonda Muller - Townsville
    mummy to William 4.5yrs ASD and recovering
    Happy Easter to all

  8. I do think that diet can have an impact on our children, the same way diet can have an impact on any of us. I also understand that children with autism are likely to have more sensitivities and to me that makes sense. I haven't tried the diet route myself yet as we are relatively new to the spectrum and I didn't want to get caught up in it and maybe not recognise there are other issues as well. I am not ruling it out in the future, but for now we are seeing similar improvements with ABA so will just do the other in it's natural timeframe. Great post, I too worry about the 'cure' people and feel it gives out the wrong message about autism. You are right, it is a way of being and not something that can be fixed, helped yes, but not fixed. Jen.

  9. Thanks everyone for your thoughtful and respectful comments.

    Sue: I have recently been appointed as a Carers NSW representative and I have also been invited to speak at the upcoming Naitonal Families, disability and Carers Summit in Melbourne during May 2010. I am still learning on how to have our voices best heard but I will be adressing the education debacle at the summit. One woman cannot change anything on her own but I'll continue to speak out about issues we face as parents of children with additional needs. feel free to have a browse around this blog for other posts about my thoughts on these matters and a few just about how much I love my babies exactly as they are. I'm also on facebook and welcome new friend requests. chantelle Jary is my full name if you decide to search for me on there. :-)

    Thanks all for reading my ramblings. I post these things up and have no idea if anyone is actually reading it or if they like it so I appreciate each and every one of you who takes time out of your day to not only read the blog but also comment. xo

  10. What a great blog. I just wanted to comment that I loved the way you wrote about 'to cure or not to cure' a tricky topic - that you dealt with beautifully. I too think that labels whilst problematic are not as scary if we deal with them head on. Good luck at school next year!