April is autism awareness month.
Day 3: Communication
Autism is primarily a social and communication disorder. It is considered that autism affects people resulting in little value seen in communicating with others, eye contact is described as ‘painful’ and making friends is difficult.
Dylan has what’s called ‘communicative intent’. Basically he wants to communicate but is unable to functionally talk.
He has strong signs of a condition in addition to his autism called verbal dyspraxia which is where the motor skills in the mouth and jaw don’t co-ordinate to produce the correct sound.
Dylan knows what he wants to say, he can understand whats being said to him so he can hear the right words being said to him but when he tries to repeat or respond there is a breakdown in the system and the sounds come out all jumbled.
It’s like this episode of Friends where Phoebe is teaching Joey how to speak French; syllable by syllable he can copy but when it comes to blending those sounds; ‘Blu bue blos do moo’.
For Joey it is adorable, for Dylan it is hell.
Dylan’s dyspraxia is the same.
Dyspraxia is a lifelong disability, as is autism, the whole body can be affected causing clumsiness, frequent falls, difficult pencil grip and a range of other physical difficulties.
For Dylan its severity affected by many factors (illness, tiredness, distractions, who knows what else?) producing good days and bad days with regard to being understood or even able to try and formulate a word. It takes time for Dylan to mentally prepare the sound in his head before trying to physically attempt it.
There is no ‘treatment’ for dyspraxia, For Dylan’s speech difficulties lifelong therapy will be the answer.
Therapy involves drills of practicing sounds on a letter by letter basis to try and strengthen the sound production with the overall aim being to be able to recall the sounds and produce the sounds when needed. Vowels are a priority – so many words mean different things when the vowel is spoken incorrectly so we are targeting those heavily.
The specific targeting is making a difference – on a good day Dylan appears more confident and tries harder to produce the sounds or words and although still severely disordered it is important that his confidence improves with these attempts.
On a bad day Dylan becomes painfully aware of his babbling is not being noticed let alone misunderstood. We as family members don’t understand what Dylan is trying to say and the harder he tries to repeat himself to be understood the more muddled and anxious he becomes.
When outdoors on these days people will often act as if they haven’t heard him, I understand that Dylan’s verbal sounds are just strange noises rather than saying anything but all the other signs are there – he’s looking and making eye contact or in a situation where speech is expected such as paying at a till but still when his sounds aren’t understood people step back and pretend to not see him.
But Dylan sees people ignoring or overlooking him and speaking to me instead and how he keeps his temper during this I just don’t know.
It’s frustrating to watch let alone partake in.
Dylan is learning at these times that when we say ‘sorry I don’t understand’ that he needs to get out his IPad and use his speech application to be understood.
This takes time; his iPad has a pin lock for security and if Dylan is feeling anxious then he rushes and often gets the code wrong. He then needs to open the app and although he’s speedy at finding the icons that he needs to speak for him the process from start to finish can still take about 30-40 seconds.
Sadly it seems as a parent watching this event occur, people already feel awkward when faced with the reality of not having understood Dylan’s verbal speech attempt. In addition to this the silence that is presented in the 30 seconds for Dylan to formulate his request or comment people appear uncomfortable and often the interaction is lost with attention being given to myself or another care giver to complete the interaction for him.
So the purpose of this autism awareness/understanding seeking post is twofold;
1 – To demonstrate that not all autism is nonverbal nor should a person’s inability to speak be a determinate of how ‘severely’ affected by autism they are.
Communication disorders such as dyspraxia often overlap with other conditions such as autism which can blur treatment guidance.
Don’t presume that a person isn’t speaking because they don’t want to, maybe they can, or are trying to, whether that is recognisable or not.
Everyone has something to say.
2- Some guidance that, if you feel awkward or uncomfortable around someone who cannot speak clearly or is slow to produce their interaction, first off, acknowledge that feeling and work through it; don’t let your management of that feeling be that you pretend the person isn’t there, or speak over them to someone else.
Tell them you don’t understand and try harder to give them some more time. Chances are that anyone who has absolutely no ability to communicate would not be safe to be out alone, so if a person is outdoors there must be a way for them to communicate back with you, you just have to wait and encourage them for it!