The idea of Educating Lifestyle came about when I was researching online about Autism Spectrum Disorder (ASD).
It all started when our daughter was around 18 months and we noticed some differences, especially in her verbal communication. She had already around forty words in her vocabulary and would mimic actions like blowing a kiss, waving, high-fiving and then slowly her ability to do these things and speak the words she had already mastered stopped, basically leaving her with one word ‘Mama’
We also noticed that she wouldn’t respond to her name and not knowing if any or all of these were related, we had her referred to the hospital at Yorkhill to have her hearing checked. She would also press her hand against her ear when distressed and we just assumed that there may be a problem with her ear or inside her ear. This took the best part of a year before we found that her hearing was fine; meanwhile we researched as much as we could, trying to figure what was causing these differences.
We had slowly gained more of an understanding of Autism Spectrum Disorder. Like most parents of children on the spectrum, we didn’t have a clue what ASD was and yet with time we seem to have a better understanding than those we expect answers from i.e. our Doctors, Pediatricians. This is a massive learning curve for all and we have realised how wide the spectrum is, so it’s fair to say, we shouldn’t expect all the answers from an outside body which leaves us having to find our own answers.
The first research we did was all about trying to diagnose our daughter as we had some sort of idea that she may be facing such a diagnosis. We were also batting blindfolded but had already come across what are called ”Red Flags” i.e. flapping hands, no eye contact, not responding to name, repetitive actions and being non verbal and there is so much more. Many will say, be careful of researching the web, but it was the only place we had to look and so we did and the most useful information we came across was from forums that had the input of the parents who had already lived through this experience. Research is time consuming and confusing, as trying to absorb so much non concrete information that we read, including articles that friends and family shared, is that each and every child on the Spectrum can be completely different; what works for one, won’t necessarily work for the other and so on. I recently read an article on ASD and there is a great quote by Phil Schwarz, Vice President of Asperger’s Association of New England, who has a child with Aspergers, he says – ” if you’ve seen one Aspie, you’ve seen one Aspie,” and how true that is!
So, at just under two years old, we have an idea about our daughter and we see the differences in her rate of development next to children of the same age and even a little younger and so we continue our research for any information and the more we discover, the more anxiety we feel. We didn’t really want to share this with friends or family at first, so we kept it to ourselves and this will only age you. It’s better to get out there and be open, don’t worry about being judged, those who judge are not worth a thought but those you may come across could be people who have an understanding and may be able to share knowledge with you that could help and if not then the sharing itself may help others. We pushed and pushed to try and have our daughter diagnosed and were told to bring her back when she was five….Five!? Was this not a waste of potentially the best three years of our child’s brain, to adapt, learn and absorb, albeit in a different way? In my eyes ASD is not an illness or a disability as we are talking about highly intelligent kids, who are able to think on another level. Maybe it is us who have a difficulty in teaching these beautiful kids.
The one thing we took action on from our research was the changing of our daughters diet, which meant introducing her to a Gluten and Dairy Free diet. Did we have an idea of what good this would do…no! but we knew there wouldn’t be any harmful side effects from trying. We just had to make sure that her diet had the nutrients she needed and some doctors may argue that we need dairy for calcium and Protein but there are many other sources for these nutrients and it’s again just about being open to suggestions, researching and finding an alternative option as we shouldn’t really be relying on another animals milk, should we? The important factor is making sure our children are on a healthy diet and not following the hype of modern day marketing.
Something we have become aware of in regards to our daughters diet is that there may well be a connection between the gut and the brain and that one change we made could well have helped or at the least not hindered her development…either way, it’s a healthier diet to be on.
We finally had our daughter diagnosed at three years old, which was both heartbreaking and a massive relief at the same time, as we could now seek help. The timing was good as she was about to start nursery and we could at least tell the nursery staff that our daughter was on the spectrum and may act differently from other kids. She may not pay attention or may have a tantrum but that whatever she may do differently had a reason and this could be observed by the staff who could then try a different approach. We were fortunate enough that the staff have made a difference and have helped with her development. However first they must have an understanding, they must be told as early as possible and the diagnosis should be confirmed before our kids start nursery and school. Without this understanding, they could be looked at differently as troublesome, lazy, mischievous and may be left to their own, which can be the start of a long slippery slope, which is most likely to have a massive impact on their futures.
At three years six months, we also learned from genetic testing that our daughter had ”Chromosome 18q Deletion” and this could also slow her development. (Will post more on this at later date)
Our daughter is now four years old and has started her second year at nursery, She is still non-verbal but has learned to communicate in her own ways and we’ve tried so hard to keep as much of a routine as possible and have absolutely no fears about this year ahead, we can simply focus on her development. Next year is the worry as it will be the start of school and here in Scotland, although teachers are being trained so they can accommodate children on the spectrum, I’m not convinced about this. I do agree with some points that have been highlighted such as the influences of other kids could rub off on her, she could pick up language quicker and learn to interact but I can’t see the system coping with extra demands of alternate teaching methods, when let’s face it, all children are slightly different. It seems there is a one dimensional view of teaching which could be the reason that some children excel, while others fall behind. First I think we have to ask ourselves if it’s the system that fails them before we go throwing all those beautifully intelligent kids, who are on the spectrum, into this potentially failing system. This is by no means a pessimistic view but simply a cautious and realistic view.
Professionals talk that there is no cure for ASD which isn’t at all surprising as there could be 100 Million in our world, who are on the spectrum and if each of those is different, would that mean we need 100 Million cures? Is it even a disease? a sickness? a disability? or is it simply a side effect of pharmaceuticals such as prescribed medication, additives, pesticides, growth hormones used in food production? I believe that if anyone out there is trying to find a cure they are wasting a lot of time and instead, we should be looking at prevention if this is at all possible. We need to cut through the red tape and check the pharmaceuticals and the impact they could be having. Diets are also playing a major part in our lives and the mainstream choices available to us leaves many with no choice as preferred options may be unobtainable in our area or out of our budget. Awareness must also play a part as the majority of the food we eat isn’t natural at all and contains a lot of additives and preservatives and these ingredients themselves are having an effect on society in so many ways and will increase with each generation until these toxic foods are removed but hey, they need a shelf life.
There is so little understanding of ASD and those best qualified in the impact, challenges and experiences are the parents themselves. The fact that we seem to have more awareness about ASD and can identify better now is testament itself to parents being more open and not shying away from networking with other parents in sharing knowledge and hopefully some good will come from this in some form, even if it is just having someone we can relate to….So be more open, don’t shy away and you will find there are a lot of people on the same boat. It’s a little like the law of attraction, they will come from colleagues at work, neighbours, friends, friends of friends and these are the people we should be collaborating with.
When I decided to write this little piece on ‘Understanding ASD’ my intentions were not about sharing a miracle cure but more to do with a parents feelings, especially in the early days, when our knowledge of ASD is non existent and the helpless feeling we have as parents but hey, we go through life every day facing challenges of some sort and our instinctive reaction is to overcome them in whatever way we can. The difference with the challenges we face with our children who are on the spectrum is that, the little bits of progress they make are so much more rewarding than any other challenges we overcome in life bar none! Our children are our future and our responsibility is to try and pave the way for a better quality of life for their future.
There are so many more sources for information out there and I would recommend joining forums, facebook groups etc and just be open and not in denial, there is nothing to be ashamed of. Instead be proud that you have a special child.
About the Author: Damon is the father of an autistic child and during the journey to diagnosis found a lot of conflicting information on the internet. The experiences of other parents who had gone through the same thing before him were the ones that offered the most hope, insight and understanding. This led to the idea for Educating Lifestyle – and there is so much more still to share.