Our Autism Recovery Story
We were thrust into the world of Autism, without knowing anything about it. Thankfully there was an established system for Autism support, but we soon found that the Autism support available to us was limited to a narrow range of interventions. Improving health was not considered relevant, and as we explored the subject of Autism on our quest to help our son, we found that there are many other important ideas that should be implemented in an overall plan to help children with ASD.
In addition to those areas we found that important to help our son, we realised how important it would be to have Autism family support. Being a family with a child on the spectrum is very difficult. Autism certainly created a significant emotional toll on our family, that ultimately helped us be better people and better parents.
The Autism Diagnosis
When our son was 4, we received a letter from his childcare, raising concerns in his development. We were handed a list of observations that seemed to be gathered over time and suddenly thrust under our noses. I didn't know anything about autism. If some had of asked me at that time, 'what are the signs of autism?', I wouldn't even know how to answer them.
Our son was referred to a specialist in childhood development, who wanted to diagnose him with Autism.
It hit us quite hard at this point. We felt incredible sadness, worry, and helplessness. Unless you have experienced yourself, it's difficult to understand how hard it is to go through this. It's not just the deep sadness, but the isolation you feel. Very few people understand what it's like and can empathise. Many want to avoid talking about it altogether.
On top of that, there isn't readily available Autism family support. The usual process is to have professionals help with the diagnosis, and aspects of the child's treatment, but not to support the family and all the additional support needs. This was additionally hard for us. There seemed to be more effort from people to convince us of the 'reality' of the situation and make sure we know how limited his life would be. This approach made it even harder for us as parents to feel better about the Autism diagnosis.
What if improving his health could lessen the symptoms of Autism?
After reading about autism, and developing my understanding of ASD, the diagnosis didn’t sit well with me, even though he met the criteria for diagnosis. The reason was that the diagnosis leads to many assumptions that didn't seem to me to be accurate. There was also a tendency to make the diagnosis, then take a breath, and use the textbook from now on. Our son's symptoms were important to form the diagnosis, but once diagnosed, then signs of Autism were not as important. It was more important to pick various characteristics from the textbook and apply them to our son. Everything he did from now on would be judged through the eye of peoples understanding of Autism. For example, he would play outside, imaginary role-playing games by himself, but he wouldn't play with dolls or other toys with a therapist in an expected way. As a result, they concluded that he didn't have imagination. This trait could be applied to him because the books say that ASD kids often lack imagination. Sure enough, they found a way to apply lack of imagination as a lacking skill.
In the scientific world, assumptions need to be tested and verified. In the case of Autism, the assumptions were verified to some degree, but only within a narrow context. There is a narrow set of tests to judge his imagination for example as above. There are many more similar tests that are to confirm ASD traits, but not look for evidence or situations where the skills are there.
Another big assumption is that Autism is permanent, and the level of improvement is limited. Autism being lifelong was the assumption that I wanted to focus on exploring. This was the one that shaped our focus soon after the diagnosis. The assumption was made, like some of the other assumptions, within a limited scope. The scope was limited to the currently used tools, which were psychology, occupational therapy and speech pathology. As with most scientific people, I wondered if the assumption wouldn't hold up if we widened the scope to include interventions to improve health.
It was clear to us that there were issues with his health. The more obvious signs were.
Symptoms of Autism worsening
Looked to be in pain
Straining when focusing on things
- He had chronic soft bowel movements
This evidence and our gut feeling lead us to look for ways to improve his health. Professionals involved with his diagnosis and treatment told us that the soft stools and health concerns were normal for children with this diagnosis, and not relevant for his early intervention treatment.
We decided to do some research, to see if we could help him by improving his health.
We implemented a clean, whole food, nutrient dense diet for our entire family. It’s incredible how good you can feel after a short time on a clean, low inflammatory, nutrient dense diet. This also gave us the energy and motivation to continue. It seemed early on to be a daunting life change, but it’s incredible how much easier it is when you feel healthy.
His main weaknesses were :
Noise sensitivity. He would scream uncontrollably with noises such as a hand or hair dryer, blender, vacuum cleaner.
Social. Our son couldn’t communicate effectively with anyone except for us (his parents). He would play alone, doing repetitive play. He would scream to get his point across.
Physical. Our son was clumsy on his feet and poorly balanced. He would bang into things. He couldn’t catch or throw a ball. He was well below the level for physical activity.
Cognitive issues. Our son couldn’t follow simple directions. He couldn’t count and seemed to be forgetful.
Fine motor. Our son could only draw basic lines. Diagonal lines were a huge struggle for quite some time.
His noise sensitivity and mood were the first to improve. These had developed quite a lot by the time he was about 4 and a half.
His cognitive abilities improved at about his 5th birthday. Once his cognitive skills started developing, the improvement was rapid. He went from learning to count to above the level for maths in a very short time. His thirst for learning was huge, and he developed a sure memory.being
Social was next. We gave him opportunities to practice socialising in the holidays before school started. He just got far enough to have some social skills at the beginning of school just before his 6th birthday. This was one of his biggest achievements. He was still very clumsy socially, but somehow he pulled off being quite well liked. We are very grateful to the school, and the senior students (grade 5 and 6) for their help, as this was very important to us (and to him).
His physical skills were a concern for me. They didn’t seem to be improving, even as everything else was. He had no interest in playing. Whenever I tried to engage him in sport, he would immediately ask ‘how many more do we have to do?’. Halfway through his 6th year, he gained an interest in playing cricket and basketball. It was a pleasant surprise! Before long, he wanted to play for hours on end. As a result, his coordination and strength were improving at a fast rate. When his interest in cricket started, he could hardly lift the kids plastic bat. After about two months, he not only could lift the bat, he could hit the ball a good distance. He even developed a good eye to hit the ball. He seemed to develop the ability to pick the ball quite intuitively, without having to focus on the ball. I had to resist the temptation train him using the common advise of ‘watch the ball’, because he could hit the ball so well, by not focussing on the ball. For so long, focussing his eyes were such a strain, he must have developed a strong peripheral vision.
Mood regulation is the most concerning remaining trait. Being such an extrovert, and very comfortable loudly expressing himself means that if something is bothering him, everyone nearby knows about it. This becomes a problem, particularly when he is not feeling 90 – 100% healthy. All this combined with learned behaviours from when he was young and in a bad way, remain an ongoing process.