About two years ago my partners son B, was almost diagnosed with Asperger’s Syndrome. I say almost, his assessment was finally concluded as ‘undecided’ due to two very different accounts by his parents. Recommendation was that if either parent felt the need to have him reassessed it would be prudent to wait until he was a few years older and more able to give his own responses in many of the assessment questions.
The words ‘social communication difficulties’ are buzz words in autism. However this is wording that can be applied to stammering, a little understood speech impediment with many psychological faucets. The same goes for many of the traits in autism such as lack of eye contact, not mixing with peers, withdrawal, frustration, lashing out, appearing to ‘zone out’, anxiety, facial and body ticks. All these can be attributed to having this particular speech impediment.
Stammering can manifest itself in many ways one of the most difficult to deal with is covert stammering. Mainly this type of stammering comes once a person realises what is happening and gets a negative association and therefore tries to hide it. They feel embarrassment, shame and anxiety and so do whatever it takes so that people may not even realise that they stammer, making it all the more difficult for others to even realise that the person suffers from a speech disorder as they are seemingly fluent.
How could you possibly disguise a stammer? People would switch words, if they know they cannot say a word they will use another, or perhaps change the conversation round to what they can say with more ease, or in a lot of cases, they simply stay silent, sometimes making it look like they do not know an answer or are not interested in the conversation. In the end, it can be terribly isolating as people may assume the person is not as intelligent as they actually are, perhaps assume they are rude as they keep turning the conversation to their own agenda or even if the person with a stammer is very quiet people assume they are cold or unfriendly.
This can all start at a very young age and can build up. It is a long process of ‘getting by’. Getting through the day without any embarrassing slip ups where someone may notice any blips. Kids may avoid social situations, ask only for certain food and drinks, avoid eye contact, probably have only one or two select friends, not want to speak in classes, avoid taking part in team games, only want to do things in a particular routine, ‘tap out’ words, rock whilst speaking….is this all sounding rather familiar?
A child that is self aware is much more likely to adapt coping strategies and become covert, it takes parents to be open with the fact the child stammers so they do not feel the need to hide it. They can stammer openly and it is fine. Therapy has lots of different ‘tools’ to help and it takes time and practice to put these into place, but acknowledging the fact the stammer is there in the first place is a huge step for children and adults alike.
Both my partner and I stammer. He is covert and I am not. So we kind of have it covered. I stammer quite openly, and can use techniques to be pretty much fluent when the situation requires it. However, for me it feels unnatural and I am happier that people know I stammer and I do not have to concentrate so hard on fluency. My partner has very fluent periods when he applies his techniques that he was taught through The Maguire Programme. We are both very different in our approaches but we are completely open about the fact that we stammer.
And so we went to the assessment for my partner’s son in reference to Asperger’s Syndrome. We had a questionnaire to fill in and it struck me immediately the similarity in the conditions with the tick box style questioning that this could lead to a completely incorrect diagnosis.
My partner has said that B did stammer from a much younger age and I have always noticed his word switching from when I came into their lives. Slowly he stammered more openly in front of us as he knew we didn’t mind or judge him. He did not receive proper help for his speech however as his parents disagreed on what his issues were hence the Asperger’s assessment. B has a younger sibling with developmental learning difficulties and mild autism and both boys spend a lot of time at autism groups and events with their mother. B often said that he cannot play with the kids at the autism events as they are very different to him.
I gently asked the clinical psychologist had he ever worked with a child with a stammer and he said no. He seemed quite surprised at the question and so I explained a little more about covert stammering. In his assessment with B, he said he didn’t see him struggle with his speech but he would take into consideration what we had mentioned.
When I went over some of the tick box questionnaires for what is used for autism assessments, I was quite horrified. If I or my parents had been asked some of those questions around the age of 11-14 I would have most certainly been given a label that would have been completely inaccurate.
The clinical psychologist however went back to see B again during school time, this time with more knowledge of the situation and he seen and heard his stammer. His assessment came back as ‘inconclusive’ as his mum felt his stammer was insignificant, the issues he had were more like autism in her opinion.
B was very confused as he had said to us he did not feel the same as these children and he rarely mixed outside of autistic groups. My partner and I insisted he join more mainstream things like a local football club etc and he has since thrived. Now he knows his difference is only in his speech and it’s no big deal, we can deal with that. As he gets older he can make his own choices and he no longer receives speech therapy as they feel there is nothing they can do until he actively wants to deal with any issues.
So, stammering is way more than just repeating a few syllables, it is much more psychological than most people realise, including those who stammer themselves. As children we cannot fathom the impact on adult life if left to fester. Autism is also way more than being different with many links to other conditions and so it is vital for clinicians to be educated at every level on all social communication disorders and their psychological impacts.
Help and advice is always available from the British Stammering Association.
One thought on “The Darker Side of Diagnosis.”
Great writing. How easily you can get the wrong assessment.