I’ve just read a brilliant post at Emma’s Hope Book in which Paula Durbin Westby talks about what it is like to be a nonspeaking (at times) autistic person. It is an enlightening interview which describes what it is like to have speech capabilities but can’t always speak. It is something I recognise in both of my autistic children who are verbal but who also loose their ability to talk from time to time.
My son is particularly affected by this and has now begun to use other ways of communicating with us either through miming, writing notes or printing pictures off the computer. I don’t know what causes him to loose his speech but I have noticed that when he is stressed, unwell or overwhelmed he finds it hard to talk and prefers to use other forms of communication. However, it took a long time to get to this point. During the wilderness years as I call it, we had no idea he was autistic or how to help him. Our understanding of autism was bleak and we had no idea what was going on when he suddenly became silent. At the time it was very confusing to have a child who could speak very animatedly about his interests but then to loose his ability to talk. Of course his language and communication difficulties became one of the many reasons why we sought a diagnosis which we got in 2008 when he was 9 years old.
Ever since then we’ve been on a steep learning curve and have learned a lot about our son’s ASD. Part of that learning curve has been to understand that at times my son finds it too hard to talk and that it is acceptable for him to use other forms of communication. But before we even started looking for alternative communication systems my son had already started to find a way of adapting to some of his difficulties. This came out of the blue one day when he started to mime what he wanted for tea (his usual bangers, mashed potato and baked beans). He was so happy with the success of this that he continued to mime whenever he lost the ability to talk and from there he started to use all sorts of scribbled notes and pictures to express himself. We embraced his ideas with gusto and absolutely love our ‘other’ ways of communicating with him and he does too. To see the smile on his face when we communicate in this way is such a positive experience.
But there is something else and that is we’re seeing more of our son’s personality. Because of his difficulties with language and communication you don’t always get a true sense of who he is. His stilted and robotic speech and his difficulties with expressing himself beyond his narrow interests somewhat masks his personality. His creativity, his intelligence and his humour is not easily picked up when we talk to him but when we communicate through his miming, pictures and scribbled notes you get a much rounder picture of who he is. His humour in particular really shines through.
Unfortunately a lot of people do not see what we see. They assume that because my son is higher functioning and has the ability to talk that he doesn’t have a problem with speech. As a result many people misinterpret his silences as him being uncooperative, stupid or even rude when he is unable to say his pleases and thankyous. As you can imagine, a lot of people then start to see him in a bad light and respond to him in a negative way. They don’t realise that he has a genuine problem in talking.
In many ways I think the lack of understanding is due to labelling people as either verbal or non verbal as if there is a clear distinction between both but in my experience there isn’t such a clear divide. In fact I would argue that the distinction between the verbal and non verbal autistic can be very blury indeed.
Anyway if you would like to learn more about what it is like to be a nonspeaking (sometimes) autistic person, then please read Paula Durbin Westby’s interview by clicking here. She provides a very welcome insight into the difficulties of speech even for those who do have the capability of speech.