Saturday, February 20, 2016

Listen up autism moms and dads!

It wasn’t till last year that I was told that Mo has a language disorder as well as ASD (Autism Spectrum Disorder). Suddenly instead of one there were two diagnostic labels: ASD and ALI (Autism Language Impairment). Wasn’t language impairment part and parcel of ASD? At least that is what I had always thought. Apparently I had been wrong! Not all children with autism have a language impairment but some of them do.

Would it have mattered if I had known of the ALI concurrent with the ASD, considering since 3 years of age Mo had been receiving speech and language therapy (SLT) anyway for his speech delay? The answer to that is ‘yes’ it would have made a difference simply because as MO’s current S&L puts it, “ if parents know this is a possibility it may help them to understand their child's language difficulties more and could mean that they seek or fight for SLT to assess language in detail and support language in their ASD children”.

Mo had been non-verbal till 6 years of age and after he started talking his language development continued to be way below average. I had taken his language difficulties in my stride believing that S&L delays were part of the spectrum and treated the issue as such. Where he was getting OT (Occupational therapy) for his sensory motor development and TEACHH  and ABA (Applied Behaviour Analysis) respectively,  he was also getting S&L for his delayed speech. However, when Mo was around 12 or 13 years old he stopped receiving speech therapy as it was felt that he could communicate well enough, or so it seemed. Neither I nor any of his therapists emphasised the need to continue. Mo’s IQ scores over the past 10 years, though somewhat  inconsistent, suggested a mild intellectual disability and sub-consciously for me the test scores put a cap on Mo’s cognitive profile and his prognosis; he was autistic and it followed that his language was going to be impaired. Hence as Mo grew older focus shifted from ABA, OT and SLT to social skills development and Mo began to receive more behavioural and psycho-emotional interventions. SLT was relegated to the back bench as Mo’s behavioural issues related to puberty took precedence.

At 17 years of age, Mo went to boarding school in England. It was purely coincidental that St. Catherine’s specialised in speech and language difficulties. In my search for schools for Mo, I had been looking for autism specialist schools but St. Catherine’s, though not categorically specialising in ASD, fulfilled most of our requirements.  Undoubtedly it was God’s plan that Mo end up there for he was diagnosed with ALI  for the first time.

Subsequently Mo started receiving intensive S &L intervention, something that he had missed out on for so many years simply because I had not been aware that his language impairment was separate from his autism and required as much attention. I am convinced that Mo's over all learning was impeded to a significant degree by challenges in the area of language which should have been at least as much a focus, if not more, as any of his other therapies.

 So when Mo’s SLT at his current school mentioned that Mo had ALI plus ASD but no cognitive delays in general I was blown away. How is it that no one had told me this earlier? After all he had been seeing all kinds of therapists for the past decade and a half.  In answer to my confusion Mo’s SLT clarified that “autism is a well known diagnosis and language impairment/disorder is less known. More research is done in to autism than language impairment so actually all of these factors could be linked to why you were not told when Moeez was younger, language impairment alongside autism was less well known and autism always seems to 'trump' a language impairment”.

So heads up to all you mummies and daddies out there. Do watch out for a language disorder if your child is on the spectrum and you think his/her language is not developing normally. I know labels can be cumbersome and a lot of people are anti-labelling,  but one cannot deny that they can guide you in the right direction. Had I known of the extent of Mo’s language impairment I would never have stopped his SLT. Also in our daily interaction I would have paid more attention to his receptive language for in retrospect I realise that he had been masking his comprehension of words and commands through the years. A lot of times when I thought he understood certain vocabulary, he was really guessing at the meaning. Since his diagnosis of ALI, I am more switched on about new words and phrases Mo tries to incorporate in his language and test him in round about ways to gauge his understanding of them. Needless to say Mo's language, receptive and expressive, has improved significantly since he went to St. Catherine's. Though the developmental gap between him and his peers is huge, he is strutting along his trajectory at a noticeable pace. More importantly he is now aware of his struggle in the area of language and is learning techniques to manage his challenges within social contexts.

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