Raising a child with a disability or special needs is pretty hard work, believe me I know. We live it every day of our lives, we read, we research, we attend an unbelievable amount of appointments and see many different specialists. We adore our kids and do the very best for them but our stress levels can be so high, along with every emotion going so sometimes people’s ‘well intentioned comments’ can actually be really offensive to us, we totally understand that you may be trying to help but please think about what is actually being said as they can have the totally opposite effect…
After to chatting to some other amazing mums to children with Autism we came up with this list of 20 things NOT to say to a parent of a child with Autism. All of the below has actually been said to a parent.
1. “He’ll grow out of it”
2. “He’s only young, you never know what the future will bring.”
3. “She’ll be fine”
I can assure you of one thing, they won’t magically grow out of it. Autism is life long, with the right support and therapy our children can grow into adults that cope with their Autism better but it will never go away, and yes, they are fine, they have not got a disease or illness.
4. There’s always some who knows someone who didn’t speak until they were 4/5/6 and says “they don’t have Autism so it mustn’t be Autism.”
This is really not helpful at all, we spend all day and night with our children. We see all the traits crop up at different times of the day and would never use the word Autism lightly as we know first hand what it means.
5. “All toddlers do that”
6. “All kids are like that”
Yes granted, toddlers may do things that children on the Spectrum do however, but not to the extremes that our children do. Children with Autism can’t control themselves in the same way, they can’t process things in the same way so it has a much bigger impact on them and on us as parents.
7. “He can’t be Autistic because…”
Please don’t ever say this, it is so hurtful. I’ve personally been told that I just need to socialise him more, or that he’s the way he is because I work from home implying that it’s my fault. What about all the other stay at home or work from mums, do they all have children with Autism too? Do we cause it because we don’t go to work away from the home?
We’ve gone through enough heartache, stress, appointments & assessments without someone saying they “can’t be Autistic because they can do x, y or z”. All children with Autism are different and it affects them differently hence why it’s an Autism Spectrum.
8. “He’s just spoilt”
Not at all. Being spoilt or giving in to your child’s demands are completely different to adjusting to your child’s Autism. We have to avoid sensory overload, or avoid certain situations. A toddler tantrum is completely different to a meltdown.
9. Leading onto “My toddler has meltdowns too”
This is so hard on us who have children who genuinely do have meltdowns. It just downplays the severity of them. And please never judge a parent with a screaming child, it’s not always just a tantrum and that parent has probably had a really rough day.
10. “He doesn’t look autistic.”
Seriously? Autism is an invisible disability, like many others you can’t physically see Autism. If you could the whole process of diagnosis wouldn’t be such a long, heart wrenching process.
11. Comparing them to films like rain man & say “what can he do?”
Like he’s a performing seal, not okay.
12. Is your other child ok?
Thankfully I’ve never actually had this one but someone with twins has and she responds with “if you mean is he also autistic, then yes! But they are both perfectly ok thank you!”
13. Yeah, my kid doesn’t tell me what he did at school either
There is a real difference between doesn’t and can’t.
14. What are they like as adults then?
I can’t even add a comment to that, I hope I never, ever get asked this.
15. From a stranger when the child was stimming “are you sure he’s not having a fit?”
For those that don’t know, stimming is a self stimulating behaviour such as rocking, shaking, nodding etc, we would definitely know if it was a fit not stimming. We see stimming pretty much every day & know the triggers
16. Have you tried camel milk / gluten free / dairy free?
Camel milk? I can’t believe someone suggested that, if it was such a ‘cure’ our children wouldn’t be going through such stressful therapies.
17. People who send you links to new therapies they’ve seen or heard about.
I think the main reason this is so unhelpful to a lot of Autism parents is because it’s like that person is such an expert after reading one article. We’ve spent many sleepless hours reading everything we can and trying to access different therapies & support.
18. “there’s a lot of that about”
like it’s a cold or catching
19. “I wouldn’t be able to cope if that was my child”
Like my child is a lost cause or something? You cope because it’s your child and you love them, you want what every parent wants, the best for your child.
20. “He’s not that bad”
No, no he’s not that bad, in fact he’s not bad at all. I didn’t say he was bad, or broken, or has something wrong with him. He has Autism, different is not bad.
By writing this I really hope I don’t scare you into not saying anything, talk to us, ask about it. Most parents of children with disabilities are perfectly comfortable talking about our kids. We are proud of their achievements and accomplishments just like you are. We are asking not to be judged as parents, for our children not to judged. Just to raise more awareness about Autism and how best to approach it.
What do you think? Have you been in a similar situation, can you relate?