Autism and Us

Most of us have seen Rain Man; some may even have read The Curious Incident of the Dog in the Night-time and from this you may have an idea of what someone with autism may be like. You may also be starting to build a picture of what Joseph is like, so before I tell you about his difficulties, I would like to share with you an extract from the National Autistic Society as to their definition of autism.

It is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them.

It is a spectrum condition, which means that, while all people with autism share certain difficulties, their condition will affect them in different ways. Some people with autism are able to live relatively independent lives but others may have accompanying learning disabilities and need a lifetime of specialist support. People with autism may also experience over or under-sensitivity to sounds, touch, tastes, smells, light or colours.

People with autism have said that the world, to them, is a mass of people, places and events which they struggle to make sense of, and which can cause them considerable anxiety. In particular, understanding and relating to other people, and taking part in everyday family and social life may be harder for them. Other people appear to know, intuitively, how to communicate and interact with each other, and some people with autism may wonder why they are 'different'.

Autism is part of the autism spectrum and is sometimes referred to as an autism spectrum disorder, or an ASD.
The three main areas of difficulty which all people with autism share are sometimes known as the 'triad of impairments'. They are:

• difficulty with social communication
• difficulty with social interaction
• difficulty with social imagination.

It's actually a fantastic explanation and everyone with autism is indeed different. Not every 7 year old is the same so why would you expect everyone with the same label to be a mirror image?

In the early days when I dared to mention my son had autism, people would often say "Does he freak out when he is with other people? Does he not like loud noises? Does he repeat everything? Where is he on the spectrum?" I am sure none of this was meant with any ill intention and people were trying to display some of the knowledge they had about autism. At the time Joseph was diagnosed, I wondered where he was on the spectrum even though that didn't mean a great deal to me at the time.  I suppose I was looking for someone to tell me, "he's not very autistic" The reality was, a test isn't done to tell you how far on the spectrum he is and I doubt if I said "oh he's three quarter's the way up" it would actually mean anything to anyone. It more than likely goes back to my earlier post in that we seem to crave a label. For what it's worth (and although it was never documented) a comment was made by the Clinical Psychologist that he was probably mid-way. I took comfort from that, in that it meant that he probably wouldn't be the child laying on the floor without any communication whatsoever. It was as if someone was cruelly asking "if your child had to have some sort of disability, what disability would you want?" 

I have been blessed to have a brilliant circle of friends and family who have been extremely supportive over the years. And whilst trying to find out more about the condition itself, they have also tried to find out more about Joseph and how to communicate effectively with him and make sure he has everything he needs when we're together.

First and foremost, I like to see Joseph as my son and secondary to that, his condition. His autism is not the first thing I see when I look at him, it's his beautiful smiling face. I am fortunate enough that the people we surround ourselves with, view him in exactly the same way; just as Joseph.

I am certain all parents would agree that being a parent is probably the hardest job we'll have. For me, parenting a child with autism is challenging to say the least, as I am never fully confident that I know Joseph's level of understanding. I try to parent him as any of my friends would parent their children and then make allowances as a last resort. In reality I am probably tougher on him than I probably should be as I don't want to use autism as an excuse. It would be easy to adopt the approach of "Joseph can't do this because he has autism" or not tell him off "because he has autism". He is still a 7 year old boy and will do a lot of what your own children do; be mischievous and push the boundaries along with the fun stuff; chasing, tickling and playing in the park. He's no different in that respect.

Joseph has hit most of the milestones late and is immature, but he is also very tall for his age. People who don't know him would look at him and expect more, thinking he is older than he actually is. This can sometimes present a problem when out in public, if Joseph flaps his arms or make a funny noise unexpectedly, because to look at him he looks no different to any other 7 year old.

In terms of what autism has meant specifically for Joseph; it has varied over the years, but we have had problems with toileting, sleep, eating, communication, understanding of danger and following instructions. These are the most significant obstacles and have affected us in the strongest way, but we have tried to take a pragmatic approach to each one. Our biggest challenge at present (and one that has always been a constant) is communication. I ask Joseph questions and he sometimes responds, and if he does his answer is often from a stock that he holds somewhere, based on what I usually ask him. Sometimes that can be both amusing and frustrating as I think he is understanding more and then when I ask "Have you had a nice day?" he'll respond with "jacket potato, milk and a bun" 

Over time, I have managed to cast my pride to one side and obtained help from a variety of groups, but equally I have relied on my gut instinct as to how best to tackle each issue that has arisen.

I have a memory of sitting chatting with a mum at the Footsteps group and she told me how her son wouldn't put his coat on and he kicked, screamed and threw himself around until she gave in. She said it wasn't worth the hassle and after all, he was autistic. I made up my mind there and then, that I couldn't be that type of parent. I knew that whilst ever I didn't tackle such a thing, Joseph would never ever have a chance of learning to fit in with society as we know it. Only recently when it was snowing, he decided to take his coat off and I asked him to put it on as it was cold. He politely declined and I politely told him to put it on or he couldn't stay out. Anybody would have thought someone had died the way he reacted but needless to say, he came back in when he insisted he wasn't having it on.  I am still the parent and he is still the child after all. I certainly don't get things right every time and every parent chooses a style of parenting that suits them; just because I have a child with a disability doesn't mean I lose that right to parent the way I desire.

Over the years, I am sure some of my friends have probably gasped at some of the strategies I have used to get Joseph to behave or eat, but I am sure they would probably agree now that it has got us the desired results. I have tried to expose Joseph to all types of situations in order to push him outside of his comfort zone.  Again, you may ask why I would do that and not just accept that he may not want to do something or that he finds it difficult. Well, I suppose the results speak for themselves and I have discovered that usually, Joseph won't try something new just because it's different. When he has tried it, we've found he has tolerated it (and sometimes even enjoyed it.)  I don't want him to be stuck completely in his 'own world' without trying bits of our world too.  Maybe it stems back to what my parents told me, "how do you know you don't like something unless you have tried it?' 

One of the early questions asked to me when they were assessing Joseph before his diagnosis was, 'does he like routine?' Well of course he bloody likes routine for God's sake! As a new mum you are encouraged to have routine and I love everything to be organised, so why on earth would he not like it? Despite my love of routine we have actually tried to do the opposite and not give Joseph the routine that many people think a person with autism craves.  I do not give him his breakfast in the same colour bowl with the same colour cup every day and I try not to let him eat the same foods and do the same activities in a particular order every day. The reason being, is I do not want his world to fall apart if the bowl is no longer there or we eat somewhere different and they don't serve his favourite food. Again, you can make your own decision as to whether I am inflicting confusion on my son or whether I am preparing him well for life. Just like all people with autism are different, my parenting style will not be to everyone's liking.

Over the time, I feel like we conquer one problem and then another arises and it's not knowing the end result that probably causes me the most frustrations. As a parent, you know that your child will not always be in nappies.  You also know that he will learn to communicate at some point and that he will go on and sit his SATS at school; you'll not know how successful he will be in those tests but you know he'll sit them. I have those constant worries as to what Joseph's capabilities will be; will he suddenly realise how to use the toilet? hold a conversation with me and go on to sit GCSEs? Or will I be his carer for the rest of his life?

I love to life plan but find that hard to do with Joseph given that I do not know what the future holds, but I try and tackle each day with a full on approach.  I don't want you to get the impression that I can cope with anything I am faced with, as that certainly isn't true.  Some days are good, others are better; then there are the days where I could happily write them off.  

This was recently sent to me and struck a chord.

Try not to judge me, but if you need to, do it when we're having a good day.