There are other types of echolalia that are difficult to explain, for example, involuntary echolalia, when the person blurts out words or short phrases and expects the ‘right response’, though he does NOT want to do it. Naoki Higashida (2017), a young Japanese man with autism, calls it ‘verbal fixation’. Naoki would love to stop “being a slave to these verbal overrides” but the fixation is insurmountable – resisting it is “as difficult as stopping yourself from vomiting”. It is like there is a ‘replay button’ that he has no control over. Other times he would blurt out words or phrases that can be triggered by what he’s seen or by old memories, and it’s impossible to stop it – if he tries, it actually hurts. If told to be quiet, he doesn’t know how – it’s like breathing, just coming out of the mouth, unconsciously.
Some autistic children repeat involuntary/ uncontrollable movements, sounds, words, phrases. These behaviours are often described as stims – self-stimulatory behaviours typical for autism, though, in fact, (if they are involuntary and unwanted) they are tics.
Stims and tics can look the same, but they are different, and they feel different. While stims are voluntary, with many functions (including ‘calming oneself’ and ‘enjoying the sensations’). Tics (‘involuntary stims’) are the opposite – they are involuntary, uncontrollable and unwanted, causing anxiety, stress and making the person feel helpless.
There is increasing evidence that some children and adults with ASD develop signs of Tourette syndrome (motor, vocal and behavioural tics that can range from mild to severe). Many autistic symptoms overlap with the diagnostic symptoms of TS. In addition to sharing some symptomatology, ASD and TD are commonly comorbid. Like autistic people with involuntary manifestations, Tourette syndrome sufferers cannot control their own movements, sounds and speech.
In addition to unwanted (and uncontrollable) tics and information processes (typical for autism), Tourette syndrome can create high levels of overload, causing meltdowns. Severe tics might significantly interfere with communication, daily activities and quality of life.
Unfortunately, when the child gets the diagnosis of autism, all his/her behaviours are often interpreted as ‘autistic’ (e.g., classified as ‘stims’). Parents and those who work with these children (teachers, etc.) can look for causes (triggers) of so-called ‘challenging behaviours’ and develop ‘behaviour management plan’ – encouraging the child to supress ‘undesirable stims’ and rewarding him with something the child likes if the child succeeds or the removal of what the child likes if he/she didn’t succeed; or (at best) ignoring the child’s behaviour (that is not always possible).
[Imagine the feeling you experience before needing to itch or sneeze (or even a stronger one – a few seconds before vomiting). Can you suppress it if offered something you really want or threatened with a huge fine if you do it?]
Another harmful consequence of (mis)interpreting some ‘autistic behaviours’ as stims is, that the person is made responsible for them: for example, when my son jerked his head, clenched his fists and shouted the same phrases in the face of whoever was in the room, I was told, ‘Do something about it. He knows what he is doing. Make him stop it!’ At that time, I didn’t know that ‘those behaviours’ might be signs of Tourette syndrome, but I was sure that he did NOT want to do it. I felt that my boy himself was suffering.
I noticed the pattern: if he started drawing/sucking in air and releasing it with a loud ‘kha’, I knew that next there would be grunting sounds, then his body movements would become jerky, then he would run up and down the stairs stamping his feet.
With this ‘package’ of what was interpreted as ‘bizarre behaviours’ he approached me or someone else he knows to start a ‘shouting match’: whatever you say, didn’t matter, because he would repeat it back to you, adding “Don’t say “[whatever you said]” For example, to your ‘How are you today?’, he’d say “Don’t say ‘how are you today’!” To your question why you couldn’t say it, the answer always is the same: “‘How are you today’ is a bad word! ‘How are you today’ is a rude word!” To your next question “why is it a bad/rude word?”, the response from the boy would be ‘Because I prefer it!”. The ‘conversation’ could last for 15-20 minutes, it was impossible to end it, even if you try to leave the room, he would follow you everywhere.
When all this ‘communication’ was over, Alyosha looked very upset, regretful and apologetic (‘I won’t do it again’). I knew he would, but I also knew that at that moment he was sincere; he did NOT want to do. And after this ‘fit’ my son was back!
[Donna Williams (2006) and some severely affected autistic individuals write about being imprisoned by this ‘non-self’. They separate themselves from their condition: their ‘ticky behaviours’ are caused by Tourette Syndrome.]
Most people with TS experience an urge or sensation (known as a premonitory urge / sensation) before a tic – a strong need to complete a tic in a certain way or a certain number of times to relieve the urge or decrease the sensation. They can’t resist it: they must complete the tic to release these sensations.
At present, many specialists working with autistic children have been trained to explain any behaviour as an integral part of a person's personality. I’ve heard some people (with the best intentions, of course) console an autistic adult (after an episode of involuntary motor and vocal ‘eruption’): “It’s OK. This is who you are.” I can only imagine the frustration and despair that this man experienced due to the lack of understanding and support – being left on his own with his problems, having lost all hope of finding help.
It is vital to distinguish physical and neurological problems that can be treated, that will improve the quality of life of our very special children (and their parents as well).
This is taken from my new book series 'Becoming a Professional Parent - (2) Learning to Speak Autistic' (to be published next year).