Heading into the Autism debate

We've all heard the media reports. We've all heard other parents views (educated or not) and we all have our own views on why our child may have autism. In my first post in this blog I present my view on what contributed to Harry's autism - wether this is correct or not is pure speculation. We have heard that originally it was a childs 18 month immunisation. Then this was disproved with the revealing truth that the data was incorrect and skewed to present results that have become very damaging. Now we are hearing that actually, this may be correct, and it may contribute. BUT only in children who are predisposed to having autism. With no way of knowing if your child is predisposed do we immunise or not? My personal view is that I will always immunise my child. Seeing the effects of diseases that could be erradicated and seeing them in my child would be too much to bear. I will not rely on herd immunity.

On meeting Harry's clinical psychologist his view was very different and it made sense. He enlightened us about a process children go through when they are 12-24 months old. As they learn such a huge amount of information in such a small period of time and then they need to learn things like walking, talking, eating and socialising. An infants brain will 'temorarily' lose (or forget) information such as the colour red or what a spoon is. He says when a child is learning to walk it is quite normal for them to stop talking for a while as their brain is focused on the walking part. His view is that a 'normal' child will quickly relearn these things and it is never an issue but an autistic child's brain will lose too much information and not be able to regain it. Harry has required quite intense early intervention, speech therapy and occupational therapy to talk. His speech is still poor but we are lucky he continues to learn more all the time.

I watched a program on tv called 'The brain that changes itself", it is also a book by Norman Doidge. Basically it is about the brain's neuroplasticity especially young childrens and that scientists have believed that different parts of the brain are responsible for different things. Through rehabilitation of brain injury victims he has seen that this is not the case, the brain can relearn new things in different parts of the brain even if the original part of the brain has been damaged. He believes children with ASD have the potential to alter their condition and change the way their brain works. Very interesting reading. I guess I have seen some of this with Harry's early intervention and therapy. Whether this is a result of his brain changing or just helping it to learn is open to interpretation. He also talked about his belief that children with ASD have brains which are more maleable and are more elastic and stretchy so they actually process so much information at one time and this is why they can go into sensory overload. This also helps to explain why some children with ASD are classified as savants. They have an amazing ability to excel in a certain area, more than children without ASD. Their brains work differently and in some areas better. Is this the brains own mechanism to counteract the parts of the brain that are not working at their desired potential? Alot more research I am sure will be done in this area!



One thing we as parents need to make sure we take other peoples views with a grain of salt unless they have experienced it themselves. I have had so many friends and family tell me what will 'fix' Harry. Most of these people are highly uneducated in the area and barely understand what Autism is. Not that this is a huge problem if once explained they try and gain an understanding. Stick to the professionals they are here for a reason. Keep talking to friends who are going through what you are, if they have advice listen to it but only use what you are comfortable with. For example I have recently started going 'organic'. Yes its the current buzz word, but I do believe it will more healthy for our family. The only problem is Harry eats no fruit, vegies or meat! Harry cannot go on this journey with us. Not yet anyway. We tried once when pressured by family to not offer the more 'junky' foods he prefered. Harry went nearly 2 weeks without eating. He drank only small amounts of milk. In future I will listen to my mother instinct. I don't believe food, preservatives or additives gave Harry autism, therefore I am not going to stress that he is sometimes eating them. I will just continue to show appropriate eating and hope that as he gets older he will eat better foods. We can only get better from here.

Coping with the sensory overload.

We didn't understand why Harry couldn't cope in certain situations. The situations varied, not usually the same, there was no constant we could pinpoint to make it obvious for us. This was inceredibly hard as until recently Harry could not talk. He was incredibly good with non verbal communication, so I knew when he wanted food or drink. But in unfamiliar settings it became downright scary. For at least a year I avoided all social contact with friends, some family and any playgroup. It was too hard and to be honest in was embarassing. I couldn't stand people staring at me and Harry and assuming I was doing something wrong. At the time I really had no idea it was sensory related. Loud noises would set him off- not all mind you it just depended on the day. Dirty hands and face were unacceptable and people touching the item he had fixated on at the time wouls send him into a fit. Mums would get downright cranky at me when I didn't make Harry share. Parents would always ask why I wasn't making Harry join in the 'group' when he was sitting quietly by himself playing. Harry didn't like people, especially in large groups. There was no way I was going to essentially torture my son so these parents felt placated that I was 'teaching' Harry something they felt I should teach him

We were finally referred to a paediatric occupational therapist who specialised in autism. It completely opened our eyes. We found strategies for dealing with some of the situations. Harry needs 'down time' alone. It is perfectly acceptable for him to sit in his room and watch a video. He doesn't get overstimulated - normal living does this - it has the opposite effect it helps calm him and regulate his body. We brought him an iPad using Harrys Facshia funding. We can take his regulator with us anywhere. He can focus on one thing and stay calm in highly stressful situations and environments. He can watch movies, listen to music and play repetitive games which he adores. He has become a whiz at.mix and match and has a fantatsic memory!

It is amazing how much you learn about yourself once you experience life differently. I have found I was very judgemental of other mothers and their children. I would classify children as naughty, rude, violent and parents as useless and lazy. Without ever thinking there may have been an element to the situation I didn't know about. That maybe there was more to the child than just being naughty. I urge all parents to not judge on first appearances. Certainly don't allow your child to be hurt or pushed aside, but at times some children need a bit of extra care to help stay calm and some lee way to participate appropriatley in a situation.

Time for a label

Both myself and my mother realised fairly quickly that Harry wasn't 'quite right'. Why was hard to pinpoint. We initially sought advice from friends in the form of "what do you think of Harry"? Mostly responses were he is fine, he is a boy and slower, his big brother must talk for him. I knew all of this wasn't correct. Getting a professional to listen to me also proved VERY difficult. I looked like a very young mum - despite being about 28 years old. No one took me seriously and assumed I couldn't discipline properly and that was why my son had meltdowns. They all said I obviously had a very strong bond with my child as he would communicate with only myself and I was the only one who could placate him when he was stressed. At the time I thought this was normal.

I was passed on to many 'professionals' who seemed to actually know nothing. They kept trying to change his behaviour when in fact he was quite well behaved. We now know he had sensory overload and this is why he did the things he did. I finally saw a psychologist who did an developmental assessment and at 2.5 years, poor Harry was sitting at 12-18 months along all areas. We quickly realised we had to treat him differently. Not in a preferetial way, but we had to remember that what we assumed he should understand was not the case. We had to continually remind ourselves to treat him like we would his younger cousin who was exactly 12 months younger!

Luckily I had my knowledge as a medical professional to help me. I knew who I wanted to see, and I knew no one could stop me seeing them. I sometimes had to demand to see people. Not take no for an answer. I finally saw the clinical psychologist who I had been dreaming of seeing for months. The best autism specialist in Newcastle. His books were shut but we had worked together previously so I was very lucky to have him see Harry. In our first session Harry went ballistic. It may have been the biggest meltdown he had ever done. The Psychologist said at the end "within the first 5 minutes I had diagnosed him with autism". Finally someone saw what we saw! The next session Harry was perfect. He made eye contact, did what he was directed to, smiled. The Psychologist was shocked but he said nothing explains the initial session. A diagnosis of PDD-NOS was given. (Pervasive development disorder - not otherwise specified). Or atypical autism.