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Lynn McCann

Our Blog will include contributions from a number of autism specialists. Lynn, Matt and Emma work for Reachout ASC, plus occasional guest bloggers.
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Lynn McCann

Whats in a Name? Understanding Autism Labels.

It was in 2004 and I was working as an EYFS teacher that I first heard the term autism.  This was strange in itself as I'd already been teaching since 1991 and had done a lot of SEN training as a student, a teacher and then as a SENCO. Two boys in my class came with Statements, one saying 'Autism' and the other 'Aspergers Syndrome'.   Each boy was very different.   One mainly communicated by screaming, the other had language.   We were lucky, early on we had some training about autism, put the strategies in place and we got through the year, learning together.  The boy with the 'Autism' label went to a special school after that, the other continued in mainstream, left high school last year and is now at college.

It was those boys who sparked my fascination with autism and soon after that year I left to pursue my career in a specialist autism school, did my autism qualifications and ended up using my mainstream experience to support other schools as I set up the outreach service from the specialist school. (Continued....)

In my time I've got to know hundreds of children with autism. And I've got to see so many acronyms and variations on the label that I can well understand why people get so confused. In the early days I came across:

  • Classic Autism
  • ASD - Autism Spectrum Disorder
  • Asperger Syndrome
  • PDD(NOS) - Pervasive Development Disorder (Not otherwise Specified)
  • High Functioning Autism
  • Low Functioning Autism
  • SPD - Semantic Pragmatic Disorder (A speech and language definition but mainly concerning the social use of language, as in autism)

There was some confusion.  I even had a parent who said they'd asked for the SPD as a label because they could not bear the ASD label.  Her son clearly had Aspergers but the label obviously meant a lot to them.  Lorna Wing lists even more http://www.autism.org.uk/about-autism/all-about-diagnosis/use-and-misuse-of-labels.aspx.

These days things have moved on, and thanks to the new DSM V (2014) Diagnostic Criteria we seem to have settled on the one term of Autism Spectrum Disorder (ASD).   Most diagnosis and EHC Plans I read are identifying the children's needs as 'ASD'.  However, it's the word DISORDER that I would rather we ditched.   Simon Baron Cohen has given a speech saying why the term CONDITION fits the bill. (see it here https://www.youtube.com/watch?v=BDEHjLMOhHI) via @ResearchAutism.  

DISORDER implies something not right, that the way a child or adult with autism functions is wrong, rather than in particular ways. If we have to have a label, or explanation as to why the person is the way they are, then let's use the words "Autism Spectrum CONDITION" or 'ASC'.  It's at least more positive, and at best, gives us scope to explore the strengths and breadth of positives, as well as difficulties, being on the spectrum presents to the children we teach. 

But what about 'person first' versus 'condition first' language?

There is currently a lot of debate in the autism world about how we use language to label people on the autistic spectrum.  In educational circles we tend to prefer person first language.   It says this is a child with autism, rather than this is an autistic child. I know many teachers who prefer to use person first language.  In Reachout ASC, our role as specialist support teachers and trainers, we work hard to get to know the children we support. We do a lot of work with them, helping them get to know themselves. We concentrate on seeing them as a whole person, discovering their strengths and characteristics.  In schools, person first language can help staff and children realise that they are focussing on a child not a condition.  Parents too, seem to prefer the person first language.  Many feel that their child is seen as a problem to be solved or fixed and anything that helps people focus on their strengths and humanness is important.

However, there are many adults who prefer to say they are 'AUTISTIC' or 'ASPIE' (for Aspergers Syndrome).They are proud of a word that defines them and many say that their autism is who they are.  Autism is the way they think, relate to the world and how they understand and interact with the world.Autism is their creativity, their strengths and their careers. Here  couple of blogs from @AutisitcAdvocacy and @MusingsofanAspie illustrating the point. 



In our classrooms we may soon be challenged on our terminology. (As always!)  Considering the debate at this time; when we write about,  speak about and support children - we will have to make a decision about the language we use. 

So in education I see that generally we are using person first language, mainly because our audience are teachers, support staff and professionals.  We are called Reachout ASC – for Autism Spectrum Condition, but as for the children we work with and the term they prefer - we will let them decide.Once we start to explore this label they have been given and what it means we let them decide how they'd like to frame it.It is their 'condition' after all, and it is our belief that a child should have ownership of this at least, especially when so many teachers, support professionals, doctors, SENDOs, EPs, SLTs, social workers etc. come and go in their school and home life, writing reports, giving advice, making judgements.

It is, after all, person centred if we let the child develop their own sense of self through and beyond a mere label.

What do you think or prefer? 

We have used some great resources with the children we support in helping them learn to understand their diagnosis. Do contact us through our website if you would like to know more about these. 

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Sunday, 24 June 2018
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