This is what I wanted to say… but didn’t.

This is what I wanted to say… but didn’t.

When I explained that my husband likes routines and makes meal plans, you said “Oh I see. Is that where you think he got it from?” and you nodded your head towards my son, oblivious in the other room. You winced a little as you inclined your head, as if the word ‘it’ was mildly distasteful.

I paused for a moment before muttering – “Well, the genetic factors involved in autism are complex. No one really knows how it works. I think there are traits on both sides of the family.”

But I wanted to say –

Do you think autism is encapsulated by a meal plan? Are you the kind of person who says someone is ‘a bit autistic’ when they like things a certain way? You are a medical professional. You might be someone’s first port of call when they are worried about their child’s development. Is your view of autism so narrow? My son and autism are one – they are inextricably linked and when you discuss autism with distaste you are discussing my son with distaste. It? You do not have to incline your head towards him as if it is some shameful secret, an unpleasant affliction to be pitied or referred to in hushed euphemisms. It is not like having nits.

Autism can make life harder but it is also fascinating and astonishing and it is an inherent part of someone I love more than life. Please think before you speak.

 

Biggest overlooks a river

 

When I asked for help because my son’s nappies are too small, when I said we were struggling because there is no way to access bigger sizes, you said “Well, the council’s position is that having a social interaction and communication disorder does not mean he should have any issues with potty training.”

My son has delays that go far beyond communication alone, I said. His consultant paediatrician told me not to force training, that it would cause more harm than good.

But I wanted to say –

I have lived and breathed autism for the last two years. I have read thousands of articles, dozens of books. I have learned all I can to make sure I can understand my son, that I can give him the support he needs. I know that describing autism as a communication disorder is accurate, as far as it goes.

But I also know that its symptoms are diverse and that motor skills and sensory processing problems can have a huge impact on the physical development and abilities of a child on the spectrum. I know that a large proportion of children with ASD find potty training extremely difficult, that many, most, are not trained well beyond their fifth year. The next mother you speak to may have just started her journey, may not know this. She may feel ashamed, at fault, because she has tried everything and her child is still not clean. Please deepen your understanding of autism before you give advice that will make vulnerable people feel even more alone.

When you said that I am lucky because my son is at the ‘higher functioning end’ of the spectrum, when you implied that we do not know suffering, that our difficulties mean nothing because my son can talk, I reminded you that you do not know my son and cannot judge our experiences.

But I wanted to say –

You talk about unfair labels and unfair judgments and you label my child and you judge our lives. My son can speak but that does not mean he can function. It does not mean that his difficulties are not complex, that he is not adrift in a world that does not understand him. I know that there are countless human beings whose lives are harder than ours. We can never truly know the battles others are fighting. But all voices should be heard and supported because, in the end, we must unite to make the world accept those who are different.

I wanted to say these things but I stayed silent – because I was too upset to speak, because I could not think of the right words, because I did not want to cause offence. I do not wish to hurt anyone, even those who are misguided or wrong.

Instead, I have written it here so that others may see.

And maybe someone like you will think before they speak, next time.

 


If you liked this post, you might like To Those Who Tut and Stare

7 Comments

  1. 26th June 2017 / 3:52 pm

    It can be hard sometimes to say the things we really need to say. Like the people who declare themselves a little ocd because they like a tidy house, I want to scream you do not have ocd because of 1 tiny aspect of their personality. I was interested to read that children on the spectrum are often longer to potty train. I wish I had known that when my son was not allowed to go to nursery because he wasn’t trained. Of course hindsight is a wonderful thing but it may have helped me to know it wasn’t something I was failing to do as a parent. #spectrumsunday

  2. 27th June 2017 / 7:41 am

    POwerful post lovely. x
    To the commenter above, Nurseries cannot exclude your child if they are not potty trained. I’m not sure if this was awhile ago but it shouldn’t happen now.
    #Spectrumsunday

  3. O
    20th July 2017 / 8:26 pm

    Very interesting article. It’s always good to see the parent’s point of view and experience and coming from you, as an ex-teacher, it even helps me more. I did not know about the potty training issue. Thanks for clarifying that. So for what I understand a child who is autistic can even experience this when s/he is in Reception. Right? I recall a girl we had at school and she even had problems in Grade 5 😔. I wonder how she felt about it and what was done to help her. She graduated from Secondary school in June. I am so proud of her! 🙂👍🏼

  4. 1st August 2017 / 9:32 pm

    My children don’t have autism – they have CP – but I think some attitudes are universal & I too have stopped myself from saying what I truly wanted to for exactly the reasons you mention. Well done for getting it all out x

  5. 13th October 2017 / 10:09 pm

    Beautiful post Danielle. I’m sorry that someone made you feel that he is anything other than perfectly wonderful. I’m also sorry that you are struggling to get access to larger nappies for him.xxx

  6. 14th October 2017 / 12:59 pm

    So sad that a medical professional can be so ignorant and rude but not uncommon as we have experienced it to with my son. I have just read Boy made of Blocks and it reminded me of your comment above with regards the high functioning comment. The author makes the same point.

  7. 15th October 2017 / 6:26 pm

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    “This is a great book to teach children not to make fun of others just because they are different. The message behind this book is something to take into account in the education of children today. As a teacher I will advise this book to my students.

    “Well written and colorfully illustrated, it has the capability of captivating children. My verdict, very good, excellent read, top class. A MUST READ!!!”

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