The first time I met Josh he was 15 years old and had just returned from a school in Boston for autistic children. I was 16 and studying for my A-levels and had never come across the term ‘autism’ before in my life.
A few days prior to meeting Josh, I met with Josh’s mother who filled me in on the different kinds of behaviours that I may expect to see and that I should not be alarmed by. I was told that he has severe autism, is non-verbal, struggles with interacting with others (even loved ones at times) in simple social situations, has major sensory issues including hand biting, slapping his hands together rigorously, and thumping himself. Along with all this information, which was completely new to me, his mother told me that he is an intelligent boy and that his behaviours do not reflect his intellect.
A few days later, I was due to meet Josh for the first time. I was a little nervous about what to expect, which was perfectly natural, after being told that a person with such challenging sensory issues was intelligent!
Josh was sitting in the kitchen eating his lunch, wearing nothing but underwear, and constantly saying, ‘Go away, go away’. I was quickly told that Josh says “go away” to everything, and that those words were the extent of his speech. Josh was (and still is) able to communicate by tapping his chest if he liked something or someone, and I was relieved to see him tap his chest with excitement when asked if he liked me. Josh’s main form of communicating, however, is by using a Lightwriter.
In simple terms, a Lightwriter is a device like a keyboard which will read aloud whatever Josh types in to it. Due to Josh’s numerous sensory issues, the only way that he can type is by using a method called facilitated communication (FC). This is where his hand is supported by someone with training in FC whilst he types. Initially, this all looked very strange to me. It looked like the person supporting Josh was simply pushing his hand on to the letters. I didn’t really know what to make of it until one day whilst undergoing training in FC, Josh typed something that I had never heard of; he typed words that I didn’t even understand. I showed it to his mother and she didn’t understand either. We looked the word up in the dictionary, and low and behold Josh was indeed making sense. From that point on, I understood Josh’s amazing intelligence and could come to a better understanding of autism and how ‘a person must not judge a book by its cover’ (a quote typed by Josh).
I have been with Josh now for almost seven fantastic years. During my time with Josh, I have witnessed significant improvements in every aspect of his life. I have seen changes for the better with sensory issues. Instead of having meltdowns a few times a week, he may have a few meltdowns a year! I now facilitate with Josh by touching nothing but his shoulder just to give him that physical presence which gives him the security he needs to type. I have learned with Josh in school for many years now and we go away on many holidays throughout the year.
Josh has typed articles for newspapers, letters, written in to magazines, and has created a superb website called Joshua's Planet.
I was also trained in a speech therapy method called ’PROMPT’ which I use with Josh constantly. It has enabled Josh to expand his language to more than two words. He can use his voice to ask for water, food, a bath, etc. And oh yeah, when I walk into his room in the morning and say ‘hello,’ I get a ‘hello’ back!
How working with an autistic person has had an effect on me personally
I was a person who never knew much about the struggles of someone with severe autism or any other kind of severe disability. I now know never to judge someone by external appearances because your initial views could sometimes be so far from reality.
Josh has taught me that the most important thing is to make the most of what you have in life and never give up. I find it incredible to see people in such situations remain upbeat all the time and not give in to the easy way out by staying in bed all day. Josh has a great social life. He goes on frequent holidays, country walks, indoor skiing, theme parks, cycling, etc. The list could go on and on. It can be a struggle for him to do all these things, but he remains determined to accomplish these things along with many others.
Obviously working with Josh has given me a larger understanding of autism and has increased my desire to work with special needs for the foreseeable future.
How awareness of autism can be improved in the community
Unfortunately, the majority of people have rarely or never come into contact with people with autism. The result is that it is very hard for people to understand the true person that is inside, begging for acceptance into their communities.
Fortunately, Josh has put himself out into the wider community. He has published articles in newspapers, made DVDs about life with autism, and created a website. He has a huge fan base in his community, and when locals see him they come over and talk to him with the correct form of respect that a person of his age should get. Unfortunately, this is not always the case. Sometimes people who do not know Josh will talk down to him like they would to a small child as they do not understand his level of intelligence, which is really upsetting for Josh.
It is crucial that the person with autism and his support workers help raise awareness in the community, but more can be done by the community. Josh and I feel that communities should create magazines in which people with special needs can write about themselves and their situations in everyday life. This would greatly raise awareness. There is no doubt though that improving awareness of autism or any other kind of disability is extremely difficult, especially for those with social integration issues.
Use of communication aids
Fortunately, Josh has benefitted from the use of communication aids for a long time and this has helped him to live a much more fulfilled life. As previously mentioned, Josh’s main form communication is through facilitated communication using his Lightwriter, but he also uses other methods. For example, Josh has learned to use a speech therapy method called PROMPT, he can use some hand gestures, and he has used a variety of different ‘talk tools’ over the years.
Unfortunately, there are a lot of people who have never heard of communication aids. Some people don’t think that their children with disabilities are bright and therefore don’t bother with these communication aids that are available.
There are also those who would love to have these communication devices, but do not receive enough funding to buy just one of them. These aids should be more easily accessible and there should be more funding available for them. How would we like it if we were intelligent and trapped inside our own bodies with no form of communication whatsoever?
I hope that I have given you a better understanding of the world of autism and the many issues surrounding it. This story details only a few of the things that I have experienced on a daily basis, and it is important to know that there is so much more to understand about autism.
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.