Fighting for Karl
- Autism charity calls for better medical care for people “left in pain or to die prematurely”
- Our latest publication is out: Identifying and Managing Seizures in Autism
- Treating Autism coming to Basildon, ESSEX
- Treating Autism Roadshow coming to Crawley, Sussex
- Fight to treat autism-related illnesses
- April 2017
- March 2017
- February 2017
- January 2017
- December 2016
- May 2016
- April 2016
- March 2016
- October 2015
- June 2015
- November 2014
- September 2014
- June 2014
- January 2014
- June 2013
- March 2013
- March 2012
- January 2012
- November 2011
- October 2011
- September 2011
- June 2011
- May 2011
- March 2011
- September 2010
In January of 2009 nothing could have prepared us for the diagnosis of autism that we received for our son, Karl. It didn’t feel better knowing what was wrong because we were told that there was nothing that we could do, “it is a neurological problem” and there were no behavioural programmes available. That left me depressed and lost and all that they had to offer was a psychologist to talk to and monthly payments from the government as compensation. Besides this I am Australian and was trying to fight a system in another language.
A few months later my depression turned to anger and I started to search for answers. I could not accept that this was my son’s fate. The internet is quite a jungle but I got in contact with someone who was doing a fantastic job of recovering his own child in the UK and his help has been invaluable.
We started the gf/cf/sf diet in May but I believe it took us a few months to get it right. I consulted a homeopath who was an expert in the diet and I believe that gave us a really good start. Our son is allergic to milk and we already knew that 18 months prior to starting the diet but we had no idea that he was actually allergic to soy and reacted so badly to gluten. We did peptide testing for the gluten as he had a severely bloated stomach and after nearly two months on the diet my son finally started having normal bowel movements for the first time in his life. There were behavioural gains as well and together with supplementing probiotics and omega 3 we saw more eye contact, more awareness and no more spinning around in circles.
In August I went to a DAN conference in Norway and met a doctor there that I liked. We started with her in October and did comprehensive testing in a laboratory in France. Our DAN started our son on several specific vitamin and mineral supplements based on his test results, including zinc/vit c/selenium/folinic acid, MB12, magnesium sulphate cream, magnesium oil and we continued with the probiotics and fish oil. One thing that concerned us greatly prior to supplementing was that our son was continuously head banging. I was desperate to stop him from hurting himself. Two weeks after starting the supplements the improvement was so obvious and two months after, he had completely stop head banging. His awareness has increased so much and for the first time he actually sat still and was able to focus on things. Now he says “bye bye” and “let’s go” in the right context and actually waves.
I fought for behavioural training and he is now in a program which I would liken to RDI. It’s a program where the parents and the day care teachers do most of the training and the therapists guide you. Our son wouldn’t sit at a table or basically do anything when we started but he’s sitting down now and doing things that I never imagined. I had no idea how amazingly visual he was and he started doing loads of puzzles. Now he can even do a 72 piece 3D puzzle with small pieces for 4+ yrs. That impressed me!
We still have a very long road ahead of us, as the testing in France revealed issues that we have to deal with, but having experienced such wonderful improvements I am inspired now and I have more strength than ever. Our son is only four years old and I know that we can make a big difference in the years to come. I know now that we do have options available to us.
I sincerely thank some wonderful parents of autistic and recovered children for giving me my faith back and the strength to go on.Visit this page for more Parents’ Stories of Hope
Our charity is run by parents and we value parent experience. As such, we encourage parents to share their stories. Parent experience cannot be viewed in any way as medical or therapeutic advice. Each parent story is just that: one account as shared by one family. Your family’s experience may be completely unrelated.