Let's Talk Autism

Why I’m changing my language about Autism

Over the years I have been working with autistic children, I have been listening to and learning from the children themselves and also from autistic adults who I’ve got to know along the way.  So many autistic adults have become my friends in person, and others are those I follow and interact with on social media.  The debate about what language we use has been going on for some time.  I started out as choosing “autism spectrum condition” as the word ‘disorder’ never seemed respectful to autistic people.   I also used to write ‘with autism’, and again, trying to be respectful at the time.  But now I  have been challenged to change my language as I listen and learn. 

The problem with ‘having autism’ or ‘person with autism’ is that it separates a person from autism and can easily lead to the autism as being something seen as ‘bad’ or ‘wrong’.  There are whole charities and industries based on autism being ‘wrong’ and some of the treatments and so called cures are inhumane.  Anyone heard of forcing autistic children to drink bleach?  Then there are those like the charity Autism Speaks, which spends the majority of its funding on finding a cure for autism. That’s why many autistic people don’t like their ‘Light it up Blue’ campaignin April as its supporting the fact that they are the ‘wrong’ type of people. Autism is not a burden, a disease or a curse.

In education, it is the fashion to talk in person-first language.   We say ‘a child with dyslexia’, ‘a child with ADHD’, ‘a child with Down’s Syndrome’ or ‘a child with autism’.   On the face of it, it may seem we are being respectful.   I am sure most teachers only want to reinforce that we put children first, that we want to see the whole child and not just their label.   I have gone along with this for some time too.  Whilst this is right, what we are doing is possibly not having the desired effect.  Particularly in autism, ADHD and Down’s Syndrome.  Autism is what a child is.  Down’s Syndrome is what a child is.  ADHD is what a child is.  We have different ways that our brains work and all have strengths and weaknesses, just as neurotypical children have.

When I have met parents who want schools to use person-first language, it has been because the professionals have not really understood their child and used the label to make sweeping assumptions leading to misconceptions and far too low expectations.    Seeing the child as a label is just as wrong as not seeing them for who they are in that label.   It’s so tricky.

Part of the solution will always be better training and understanding for teachers.  In their defence the SEND training many of them get is woefully inadequate and it rarely becomes a priority for schools once they are in their jobs.   So, we have teachers who want to help, but don’t know how, who are given bits of advice but little support, trying to implement support for the child without consistency or success.   In my experience, when those supports are in place,  the teachers do a great job.    Some will seek out their own training and research but so many are already under so much pressure to do so many other things. They ask for training or support and it doesn’t happen in time to help that child.

Children who need support are not ‘wrong’. We should instead see the wonderful diversity and potential of autistic people. Yes, some have so many difficulties to overcome and these are only some of the reasons:

  • It could be that the promised support isn’t being delivered or is not being allocated in the first place (sometimes this is because of LAs refusing to do an assessment).
  • It could be because others don’t understand how they are communicating,
  • It could be because the environment is sensory overwhelming or the demands and pace of the school day is too fast and complicated.
  • It could be that their peers don’t understand them and so leave them out or bully them.
  • It could be that teachers talk too much or expect them to understand their ambiguous language.
  • It could just be that the pace and content of our curriculum is made inaccessible for the autistic child and the pressure on the teacher to get through the curriculum leaves them no time to breathe, never mind the children!
  • It could be that their abilities are not being recognised because everyone is focussing on difficulties and not giving them the right opportunities. 
  • It could be that they are seemingly doing okay but trying to cope with anxieties and difficulties that they are trying to hide. 

I can understand why some people use person-first language but from now on, I am going to use ‘autistic’ to describe the people I work with, am friends with and seek to support because that is mostly their preferred term. I like it because it celebrates the diversity and value of people for who they are,  not what someone else or society or the education is trying to make them be.  I want to thank autistic friends for their education and campaigning on this.

There is also the issue of ‘disorder’ versus ‘condition’.   Our service choose ‘condition’ over disorder because we thought it was more respectful.   Disorder seems to be borrowed heavily from American language where to get support in education and social services through the private medical insurance schemes, a person needs to be diagnosed with a ‘disorder’.   Definitely this is a medical model that makes me very uncomfortable. I am not totally happy with the term ‘condition’ as I reflect on this more and more, so maybe I will have to reconsider our name in the near future.

Of course, wouldn’t it be just best if we didn’t need to label people at all and be able to have the diversity in our education system to allow for the diversity of children that actually exist, (and always have done.)   I will continue to ask each individual what term, if any, they would prefer and explore their lives and identity with them in the driving seat (or leading the way).   There are so many more issues about identity, I am aware, but that’s another post.

I know people who are deaf who want to be known as a deaf person and those who want to be known as a person with hearing impairment.  I know people with autism who aren’t at all bothered which term is used as long as it is said with respect and those who want to be known as autistic.  Respect is the key. In the end – we are all part of the wonderful diversity of humanness.

And finally, I am sorry to anyone who has been offended by any term or phrase I have used in the past. Please forgive me.  I hope we are all learning together for a better future for autistic people. I’ve already changed the terms I use in my training and work in schools. I’m happy to chat to anyone that I meet about this.  Maybe we’ll have tea and cake 🙂

Please respect others in any comments that you are welcome to make.

*My books for LDA are titled ‘How to support children with Autism Spectrum Condition in Primary School’ and ‘How to support students with Autism Spectrum Condition in Secondary school’. These are following the agreed educational language of the date and the alternative term of ‘autistic’ is described at the beginning of the book. This is by no means meant to be separating the diagnosis from the person and throughout the books the focus is on understanding the individual person and how best to support them in schools with practical strategies that have been tried and tested in our practice.

4 replies
  1. MsO
    MsO says:

    Number 5 says Autism Speaks did not employ autistic people, but on 6 it says it had one. Isn’t this a bit confusing? ?

    I am in shock to think that parents would abort a child with autism if they knew during pregnancy, but I am not surprised as it is done with DS children.?

    If we would see autism in the same way we see DS, then we would not look for curing it as we accept DS people as they are because we can’t cure it. Is there any research being done to cure DS?

    Yet… If there would be a way to diminish the pain autistic people feel with overstimulation/sensitivity… Wouldn’t they want that? Do they still want to have meltdowns? I know we are to see how to help enabling the environment, but sometimes that won’t be possible, especially during unprepared or unpredictable moments. It is true, though, that we all have some degree of discomfort, be us NT or autistic and we NTs can’t always deal with these as well in some degrees.

  2. Thomas Sutcliffe
    Thomas Sutcliffe says:

    Excellent post. As an autistic person I hugely appreciate the level of understanding that you have demonstrated. The key, as you correctly identify, is respect for us as PEOPLE.

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