Why I dislike the phrase ‘If you’ve met one person with autism…’

Why I dislike the phrase ‘If you’ve met one person with autism…’

If you’ve met one person with autism … you’ve met one person with autism.

Ok. Let’s be clear – I wholeheartedly appreciate the sentiment behind the phrase. People with autism are individuals. Of course they are individuals. We know, even if there are those who cannot put it into practice, that we should never judge a group of people based on an arbitrary set of criteria.

We should not judge all women – or assume all women react the same in all situations – based solely on the fact that they are women. The same goes for sexuality, race, religion. All over the world, in all walks of life, people have similarities and people are different.

The autistic spectrum is not a linear scale; it is multi-dimensional – a complex continuum of peaks and troughs, strengths and weaknesses, interacting with each other in infinite ways. There are those who are unable, or choose not to communicate through language. There are those who cannot stop speaking, who will talk about their passion or interest indefinitely, with no awareness that their audience has stopped listening. Some of those who do not speak may never be able to live independently. Some are perfectly capable of caring for themselves; they just do not feel compelled to communicate in that way.

I know that the phrase simply seeks to make people visualise the autism spectrum in a more helpful way.

Autism is not a line. It is far more beautiful than that. Sometimes, I feel like even the colour wheel is not an adequate representation. It should be a sphere, with infinite colour blends and 3D space –

The autism spectrum - if you've met one person with autism

BUT

To me, the phrase ‘If you have met one person with autism…’  seems to suggest that the traits of autism are so different and manifest in such different ways that understanding and acceptance are impossible to obtain. It may imply that an average person cannot hope to learn much about autism unless they have had complex interactions with hundreds of individuals.

That is not true. And sometimes I think it can be counter-productive.

Recently, I added this meme to the Someone’s Mum Facebook page. Many of the fans of my page have children with autism, and the meme seemed to resonate with them. It was shared hundreds of times and reached tens of thousands of people.

Autism parents: the struggle to adapt to seasonally appropriate clothing is real.

 

Even though their children are different ages, are on different places in the spectrum, live on different continents – still, there was something that united us. It wasn’t just the parents of children with autism that recognised how their experiences reflected mine either. There were even autistic adults who felt compelled to comment, stating that they struggled with similar issues.

Some people had children who preferred to be naked, even in sub-zero temperatures. Others had children who could not be parted from their hats and coats, even in the peak of summer, like my son. Some could only bear a certain kind of underwear, a certain brand of T-shirt.

Many people with autism have issues with sensory stimulation, meaning that clothing, and some textures, may be very appealing, or abhorrent, to them. Many people on the spectrum have a strong rigidity of thought and struggle to adapt to changes in routine. These two traits are responsible for all the experiences above.

People who have not experienced autism much are often afraid to discuss it, afraid to ask questions. They fear that they will put their foot in it, say something that highlights their ignorance or causes offence. If they hear the phrase ‘If you have met one person with autism…’ regularly, I honestly think it could exacerbate the situation. Imagine two conversations, on the same topic, played out differently:

Parent of child with autism “I am really struggling to get him to take his coat off in this heat! He just refuses.”

Friend: “Oh, my friend’s daughter is also on the spectrum and they can’t keep clothes on her!”

Mother: “Well, if you’ve met one person with autism , you have met one person with autism!”

And that could be the end of the discussion. The person with limited experience goes away none the wiser, feeling like they cannot really be expected to understand.

Parent of child with autism “I am really struggling to get him to take his coat off in this heat! He just refuses.”

Friend: “Oh, my friend’s daughter is also on the spectrum and they can’t keep clothes on her!”

Mother: “Ahhh yes. There are a few reasons why that might happen. Some children with autism have sensory issues and that means they can either really like the sensation of some clothing or hate it. He really enjoys the feeling of pressure all over him and the coat helps with that and makes him feel safe. Your friend’s daughter may find some clothes do the opposite – she may be supersensitive and find them intensely irritating.”

Friend: “Oh that is really interesting. I did not realise that was the issue that may cause it.”

Mother: “Yes, and of course, those on the spectrum sometimes really struggle to adapt to changes in routines, so it is really hard when the seasons change and the clothes we wear change anyway.”

Friend: “Oh yes. That makes sense too.”

In which of these situations, is a deeper understanding of autism developed?

Yes, if you’ve met one person with autism, you have met one person with autism.

But if you are willing to open your mind, to ask questions, to embrace both the similarities and differences of all the individuals around you, whatever race, gender, sexuality, religion or neurotypicality –

Well, you can actually learn quite a lot, even from one person.

 

 


For similar posts, you may like to read:

The Semantics of Autism
or
The Fight: War cry for an Autism Parent

8 Comments

  1. 1st June 2017 / 9:12 pm

    Yes everyone is different and generally I agree with the phrase which I think it there to deter stereotypes and make sure people are treated firstly as individuals. But the truth is that if someone has an ASD diagnosis then they have a triad of impairments that may not manifest in the same way, but are none the less, the same triad of impairments as others with the same diagnosis. Definitely an interesting read.

    • Someone's Mum
      1st June 2017 / 9:14 pm

      Thank you. 😊 It is not that I do not want to spread what the phrase stands for. I just think the phrase itself is not necessarily very good at doing that, if you see what I mean. That is what I was trying to get across. Firstly, because it can confuse people who are not sure what autism is, and secondly because it is meaningless without a deeper discussion and context anyway 😊 Thank you for reading

      • Tayva
        2nd June 2017 / 11:31 pm

        I think most everyone is confused with what autism is. Absolutely confused. Is it a mental disorder? A set of behaviors? An undiagnosed medical condition uniquely presented in each person? The “experts” can’t agree so it seems the general public is rightfully confused.

        I appreciate your perspective and this article, it made me think. I disagree with you though, and I personally love this statement and use it often. For me it is an opening to a conversation and the way I present it puts others at ease to ask questions and share their experiences. As the mother of a severe ASD child we are repeatedly hurt by people who think they “know” autism and don’t get to know my child. Since my daughter has low-registration lights and sounds don’t bother her. Texture doesn’t bother her. But, get in her face and start making demands in an ABA style and she will headbutt the wind right out of you. True story.

        As with everything, context and respect are equally important to the words spoken. Your example was very shaming – as in spoken in defense of something. In our world that phrase is positive and educational, a conversation opener. Feeling uncomfortable asking questions about a label is normal and it is out of respect – people asking questions want to learn but don’t want to make others feel sad or different. We spread a lot of awareness and make it clear that while we prefer to share all of the fun and special things about our child we are always 100% open to questions and talking about the hard stuff. Mostly we want to be invited to play dates and have friends so we try to talk about many things, not just the feces smearing/eating, starting fires, diapers on a 7yo etc…but all of that is very much our autism. Some kids become amazing engineers while others wear diapers their entire life.

        • Someone's Mum
          2nd June 2017 / 11:38 pm

          It sounds like you use the phrase as best as it can be used.

          But please do not be confused by what I say. I even state the huge variations in autism that you mention – that some will lead independent lives and some will never be able to.

          But my point is that you need all of the discussion that you mention in order for the phrase to be helpful at all. Without context, the phrase is easily misunderstood.

          With context – explaining and constantly educating about how autism can be so different – the phrase becomes redundant.

          That is my point – that the phrase is not helpful in itself. Not that the concept that all are individuals is not a good one. Thank you for reading.

  2. 3rd June 2017 / 2:40 am

    as always, I’ve come away from your post having a better understanding than I did before. Thank you

  3. 13th June 2017 / 2:32 am

    My experience of autism is as a teacher, my experience of disability is as a mother. There are occasions when I just can’t be bothered to try and educate people, but there are more often times when a stranger will make a comment about my daughters behaviour or question why i’m doing something and they will actually appear interested in hearing my response. Depends on my mood and how much my daughter is tiring me out at that particular point in time #SpectrumSunday

  4. 16th June 2017 / 3:01 pm

    I guess, “If you’ve met one person with autism you’ve met one person with autism” is a caveat to try and help people remember that autism is a spectrum condition with lots of variation in how it presents for each individual affected. I think there can be a danger that someone could assume they understand autism because they have taught or met one person with an autism diagnosis – this frequently used phrase is a gentle way of challenging wrongly assumed expertise. I agree that on it’s own this statement is pretty redundant though – there needs to be a lot more foundational knowledge before this expression can be used in a helpful way. #SpectrumSunday

  5. 16th June 2017 / 3:15 pm

    What a lovely post to read, I’ll be honest I’ve said itself but in my defense its probably been in situations where I was exhausted and had no energy to educate. I’ll be sure to educate next time now xx

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