Being non-verbal does not mean you cannot communicate; you can use sign language, you can write/type, you can use pictures (Picture Exchange Communication System – PECS) or you can use an augmentative communication device. Such devices used to cost a fortune, but now they are just apps you can install on a tablet computer or smartphone. These apps exist in numerous languages not just English, Spanish, German and French.
In 2007 we used PECS and started to use a special touch screen connected to a PC. Using special software, Monty could show that his vocabulary was much more extensive than we thought, even though he could not speak, read or write; it was all picture-based.
I just saw that one American study is suggesting that the incidence of DSM 5 autism is now 2.5%. I think this will inevitably mean less and less attention for those with non-verbal autism, which I suspect is still around 0.3% of three year olds.
Parents or the State?
Who should be doing something to help those who are non-verbal?
This question recently arose when I was talking to the family of an 8 year old boy with severe autism. He is non-verbal, but goes every day to a special school for autism. I asked if he is going to learn sign language, or is he going to get some other kind of means to communicate? Apparently not. I explained about augmentative communication devices and suggested asking the school about them, or just go and buy one. You do have to wonder what they are doing all day long in this special school.
There are many alternative methods to communicate, but they all require someone to teach them.
Whose job is it to choose a method and make sure it is implemented?
I guess this depends on where you live.
In my world, the proactive parent would start to do this by the time the child was three or four years old. Given not all parents are proactive, you would think that at pre-school or junior/primary school “the State” would step in and take some action; apparently not, at least where we live.
So what happens to little kids who have no means of communication? They become adults who have no means of communication and, not surprisingly, they will have major behavioural issues.
Non verbal vs non conversational
Whilst on this subject, there is another important issue to highlight. Even when some people with severe autism do start to talk, they very often do not become conversational. They can answer questions and make requests for items they want, but they do not become chatty like typical kids.
Some parents refer to their non chatty child with autism as being non-verbal, this really is not fair to those children who do not have a single spoken word.
Some children with autism can sing but do not talk. This may sound very strange but both Monty's assistants also participate in musical/theatrical group of kids with autism that puts on public performances. They have such kids.
I think if you can sing, you can be "trained" to talk. It is just requires a lot of effort by someone - parents, therapists or school assistants.
Becoming more conversational is a continuing challenge in educating a child who was non-verbal. I have a big pile of books and training manuals on this subject and recently decided to re-emphasize this in Monty's daily schedule. We cut back on physical education (PE) at school and one after-school piano lesson. We already cut out the two foreign languages at school to make time for 1:1 work with his assistants.
By encouraging longer answers to questions both spoken and written, there is also a net benefit to regular school work.
Studying Severe Autism
Researchers tend to avoid studying severe autism, which often also means non-verbal autism. Research is focused on what I would call Asperger's and what researchers would call level 1 autism; in DSM5 terminology there are 3 levels of severity. Clearly it is much easier to study people who can hold a conversation and have a typical or even high IQ.
There is an initiative, see below, to study severe autism, but for drug producers the big market is mild autism. You can see this by looking at the types of drugs currently in clinical trials.
What Can We Learn from Studying Severe Autism?
Non verbal vs non conversational
Whilst on this subject, there is another important issue to highlight. Even when some people with severe autism do start to talk, they very often do not become conversational. They can answer questions and make requests for items they want, but they do not become chatty like typical kids.
Some parents refer to their non chatty child with autism as being non-verbal, this really is not fair to those children who do not have a single spoken word.
Some children with autism can sing but do not talk. This may sound very strange but both Monty's assistants also participate in musical/theatrical group of kids with autism that puts on public performances. They have such kids.
I think if you can sing, you can be "trained" to talk. It is just requires a lot of effort by someone - parents, therapists or school assistants.
Becoming more conversational is a continuing challenge in educating a child who was non-verbal. I have a big pile of books and training manuals on this subject and recently decided to re-emphasize this in Monty's daily schedule. We cut back on physical education (PE) at school and one after-school piano lesson. We already cut out the two foreign languages at school to make time for 1:1 work with his assistants.
By encouraging longer answers to questions both spoken and written, there is also a net benefit to regular school work.
Studying Severe Autism
Researchers tend to avoid studying severe autism, which often also means non-verbal autism. Research is focused on what I would call Asperger's and what researchers would call level 1 autism; in DSM5 terminology there are 3 levels of severity. Clearly it is much easier to study people who can hold a conversation and have a typical or even high IQ.
There is an initiative, see below, to study severe autism, but for drug producers the big market is mild autism. You can see this by looking at the types of drugs currently in clinical trials.
What Can We Learn from Studying Severe Autism?