The Top Ten Offensive Comments People Have Made About My Autistic Family

I have two beautiful and wonderful autistic children. I also married a unique and handsome autistic man (though we were married 19 years before he was diagnosed). They all enrich my life but being different does seem to attract attention at times…and not always positive attention!

As a parent and wife I have had to develop broad shoulders and thick skin to many things people say about my family. I thought I would share the top ten most offensive ones and explain why they hurt so much and what you could say instead.

Firstly I want to stress that this is not to condemn anyone or make them feel awful. It’s about education and understanding so if you have said any of the following don’t feel guilty just endeavour to think and understand more from now on. Thank you.

1. ‘Will they recover one day?’

Why is this offensive? Autism isn’t an illness or a disease that gets better. It is a lifelong difference that should be embraced and understood. By asking if my children will recover you are implying they have something awful that needs treatment or therapy to get rid of it. You can’t ‘get rid of’ autism and you insult my family by implying or suggesting they should get over, recover or get better from their unique differences.

It would be better to say ‘Maybe they will change the world one day!’

2. ‘It’s that modern day ‘in thing’ to cover up poor parenting.’

Why is this offensive? You are saying autism is fictitious and that the unique make up of my children and husband which makes them who they are is a negative thing brought about by something I (or in my husband’s case his parents) did. Autism isn’t ‘new’ despite the fact we now understand it better and therefore diagnose more often. Autism happens in poor families, rich families, highly skilled parents, working class, the unemployed and the elite. You will find autistic children and adults in families with a huge variety or parenting methods so there is absolutely no evidence to suggest it has anything to do with poor parenting and suggesting otherwise implies ignorance.

It would be better to say ‘It’s more common in modern days but hopefully that helps parents feel much less alone than before.

3. ‘I’m praying for a cure.’

Why is this offensive? You are praying to change the very being of who my children and husband are! You can’t cure or remove the autism from them any more than you can take out their hearts! God made them exactly who they are and he accepts them and loves them. Why would God want to cure someone he made wonderfully unique?

It would be better to say ‘I’m praying for you as life must be a bit more difficult at times for you.

4. ‘It’s a slap he needs not a diagnosis.’

Why is this offensive? It questions my parenting and implies my child is unruly and undisciplined when he is autistic, not a brat. We say autistic people are very rigid but in fact society is very rigid in how they expect people to behave. Acting differently to expected does not mean my child needs corrected it means we need to be more tolerant and understanding.

Instead you could say ‘It’s understanding he needs and that can start with me.’

5. ‘I hope none of my kids ever copy yours!’

Why is this offensive? It implies my child’s behaviour or actions is something unacceptable to others. It’s usually said to me when my child is flapping, spinning, making repetitive noises, or not answering when spoken to by a stranger. The fact my child is non verbal seems an alien concept to some. There are so many amazing things both my children (and husband) do that I think if other children (and adults) copied their resilience, energy, enthusiasm, excitement and empathy the world would actually be a better place.

Please rephrase your comment to ‘There is so much my children could learn from yours!’

6. ‘Oh everyone has a bit of that really so what’s the big deal?’

Why is this offensive? By implying everyone is on the autism spectrum you imply my children’s and husband’s struggles are not valid and their diagnosis is worthless. In order to be diagnosed with autism you have to meet a high level of criteria and be assessed by professionals in a number of fields of expertise. If we were all a little bit autistic why would we bother diagnosing anyone?

It would be much better to say ‘Oh you have a diagnosed condition. That’s quite a big deal!’

7. ‘They never had that in my day’

Why is this offensive? It implies autism is made up. You only need to meet my family to know this isn’t true. Oh and for the record my husband was born autistic and he’s 60 so it’s ‘been around’ much longer than people think!

Instead it could be said ‘I know autism was around in my days too but unfortunately it wasn’t as well recognised back then.’

8. ‘I’m so sorry. That’s awful.’

Why is this offensive? You are saying that my children and spouse are so defected and bad that them being autistic is something to be ashamed and depressed about. There is nothing awful about autism. Don’t say you are sorry please. It is NOT a tragedy.

If you want to express love when someone is diagnosed please say something like ‘I’m so thankful for you. Being autistic doesn’t change you and I am still your friend.’

9. ‘Are you sure he should be in mainstream with normal kids?’

Why is this offensive? You just implied my child isn’t normal! You also implied my child has no right to be educated among his peers. That is dangerous, insulting and very very hurtful.

Instead be supportive and inclusive and tell me ‘I am so glad your son is in mainstream with my child. It’s how it should be and we all gain from it.’

10. ‘He seems fine to me!’

Why is this offensive? Because my son, my daughter and my husband are all fine already! They do have struggles (wether others see them or not), they do react differently to others sometimes and they may communicate in unique ways but they are perfectly ok too. Just because we don’t see someone’s struggles does not mean they don’t exist.

It’s much more respectful to say ‘You look well. I am proud of how well you are doing.’

The vast majority of people don’t mean to offend and I understand that. However a more careful choice of words and respect go such a long way.

Here’s a cute picture of the three most amazing autistic people I know. Why would anyone want to say any of the above about them?

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She is NOT a ‘spoil brat’ she is a child with serious food aversions!

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Have you ever joined any food groups on social media or watched food programmes on television? I have to say I usually avoid them as someone who generally has little time to watch TV and who struggles to cook.

However I was chatting to a friend today who had been watching TV recently and heard a famous chef on prime time TV talking about ‘fussy eaters’ and saying that it was all down to the parents ‘giving in.’ She felt she had to say to me as she knows the struggles I face daily with my daughter.

Just minutes later a fellow blogger posted how she was outraged having read on a huge Facebook group relating to food that a professional was advocating ‘starving’ fussy children until they gave in and ate!

I should be used to this by now but it still hurts. People feel so open about judging my parenting and my cooking and even my mental health because I happen to have a child who has serious food aversions and struggles to eat.

It is a daily battle for me to remind myself I am not to blame!

IMG_1851Every parent wants to feed their child. It is fundamental to their welfare and brings us so much satisfaction to know they are happy and nourished. My daughter was a wonderful breast feeder and despite having low birth weight, she was settled, happy and growing on breast milk. Then I began weaning and suddenly everything changed! From the very start she refused solid food and eight years later we are still struggling.

We have seen paediatricians, dieticians, health visitors, mental health nurses and psychologists and we are still struggling.

If I put food in front of her and tell her ‘it is this or nothing’ she would starve.

If food touches she has a huge meltdown and stops talking and interacting. It traumatises her beyond belief.

Every single day is a struggle. People say it is my fault, like that helps. People say she is controlling us, like that will make her eat! The worst ones are those who say she is a ‘spoilt brat’ when in fact she is a child with extreme anxiety and food aversion! It is heartbreaking.IMG_1850

We have a few foods she will eat and those are saving us from the added trauma of a feeding tube (a trauma that could result in no food or drink ever going in her mouth again). She has only two things she will drink. Her weight is a serious worry as is her health as she walks a fine balance between being ‘well’ and ‘we may need to intervene’.

We have days she will eat and days she won’t.

Her food aversion and eating issues are complex and related to many things and not just ‘fussy eating’.

If I am to blame then why does her twin brother have no issue with food and in fact will eat anything out in front of him?

There is no history of eating disorders in my family.

My children are not fed on junk.

My daughter is not a spoilt brat and neither will I allow her to starve. That is known as abuse!

Food aversion and eating disorders are REAL. TV personalities should know better. Professionals should know better. Ignorance is rife about this matter and it is destroying children and families everywhere.

Please stop judging!

My child is NOT a spoilt brat! She is caring, loving, gentle, beautiful and kind. She also has food aversions and an eating disorder.

Unless you live with this it is hard to understand. Ignorance from professionals and TV personalities is not helping.

Food aversions and eating disorders are no laughing matter. How would you feel if it was your child or someone you loved struggling?

 

A version of this blog first appeared here

 

50 Reasons Why We Still Need Autism Awareness Month

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You are probably thinking this is going to be a heck of a long blog with a title like that. What use would that be? I have no intention of boring you so I will cut to the chase.

If you have ever wanted to know why we still need autism awareness days or months or awareness days for any other type of condition here is why…

These 50 comments are all from the general public and each and everyone of them were actually said to a family with a child with autism or additional needs.

This is why I keep writing about autism. This is why we need people to talk about it.

1. Now your child has glasses it will cure his autism.
2. The best way to stop your child from smearing is to change him more often.
3. Your child’s difficulties are because you worked while you were pregnant.
4. Your children have autism because you don’t love them enough.
5. They probably have autism because they are twins. Twins always have problems you know.
6. It is because you had post natal depression. You are to blame for your child being disabled.
7. Your child is like that because you are not strict enough with them. They would never be like that if they were mine!
8. Are you sure they have autism? They don’t look autistic to me!
9. Vegetables, your child needs to eat more greens and then they will be fine.
10. It is because you breast fed them for far too long!
11. Your child needs to control themselves better.
12. Are you sure it isn’t you with the problem? Have you thought about counselling?
13. You must have really done something terrible is a past life to have a child who is blind.
14. Have you tried praying more?
15. She is non verbal because you don’t speak to her often enough.
16. He is just lazy.
17. They never had anything like that in my day you know.
18. He’ll grow out of it.
19. Have you not thought to use essential oils?
20. They just need a good smack.
21. Once he starts talking you will never know he has autism.
22. Disability is just a excuse for poor parenting.
23. Your child has that because you neglected them.
24. It is learned behaviour because their brother has it. They are just copying you know.
25. He just has too much screen time. Take his iPad away and he will be fine!
26. All kids do that.
27. It’s just because you have anxiety. That makes a child disabled.
28. She isn’t talking because you are deaf so you can’t teach her!
30. He’s fine in school you know!
31. Fillings. If you have fillings in your teeth it makes your child disabled.
32. Peppy Pig is what makes your child autistic.
33. You need to feed them the right stuff. Organic, gluten free, sugar free, wheat free…
34. It was probably for the best you had a miscarriage as you would not want another child like your son would you?
35. Cool they have autism! What’s their special gift?
36. He’s always fine with me you know!
37. It’s because you and your husband separated.
38. There’s no chance he has autism because he gives good eye contact.
39. There’s no chance you have autism…you have a job!
40. Are you sure they actually got diagnosed with that?
41. You just sent her to the wrong nursery!
42. Vaccines. I got my child immunised and made them disabled.
43. They just need more fresh air.
44. Dirt. My house is too clean and that has caused my son’s autism!
45. Have another child. If he has someone to play with he will be fine.
46. She can’t have autism, she’s a girl!
47. She is way too social to have autism you know!
48. You do way too much for him. Doing that makes them disabled.
49. You just want people to feel sorry for you because you have a disabled child.
50. Mixed race marriages. It isn’t right and that is why your child has problems!

Are you shocked? Angry? Upset?

So was I.

Ignorance is still rife and until people realise how wrong and hurtful comments like this are I will continue to write about the reality of my life.

You may have heard about autism but do you really know what it is?

It is alright to not know but it isn’t ok to say any of the things above.

I just hope and pray that every awareness day, every awareness month and every blog I write goes some way to dispelling some of these awful comments.

Until then I will talk about autism in all its reality, splendour and wonder.

Because I never want these two to ever have to hear any of those 50 comments, ever!IMG_0725

 

Dear parent, please forgive me

Dear parent, please forgive me

I am trying to think what I need to buy for dinner tonight. I don’t need to hear your child screaming in my ear and shouting at you. Is the supermarket really the place to bring your child when they are like that?
Dear parent of THAT child…I am sorry I judged you. I am you now and it is tough. I had no right to look down on you or think wrong of you or your child. Please forgive me.

Oh really? I nearly knocked your child down in the middle of the road! Could you not keep a closer eye on them? Or even better teach them road sense!
Dear parent of THAT child…I now understand completely! One second was all it took! And you told them so often and yet they still did it. It just isn’t alway possible to hold them every single minute of every day. I went off at you that day. I am sorry. Please forgive me. And please look out for my child when you are driving too.

There is NO way I would let a child that age have a dummy in their mouth! That is appalling! It is so bad for their speech, their teeth and it looks terrible!
Did I seriously think that? Gosh I was so ignorant! Dear parent, I am sorry I judged you without thinking. I am now THAT parent with a seven year old clinging to dear life for his ‘dum dum’. I get it now! Sometimes you just have to do what you have to do and ignore others. I have no idea what battles your child was facing or what was causing them to need comfort that day. Who was I to judge? I am now back in that baby aisle with a child three quarters of my height and thinking of you.

Why would you put a child as old as that in a buggy when they should be walking! Honestly some parents are just so lazy and do anything for an easy life!
Someone should have slapped me! I am now THAT parent of a much older child who has only in the last year moved from a disability buggy to a wheelchair. I am still pushing him and I am sure many people think of me now as a lazy parent! If only they knew. If only I had known all those years ago!

I wasn’t nasty before I had children. But looking back I was judgemental. I knew about parenting. I was aware of disabilities.

But I was not living it.

I never knew that pain when you feel the world is staring at you in a supermarket because your child decides to have a hissy fit because you said no. I never knew that shock and adrenalin rush when you suddenly see a car approach your child who has wandered into the middle of the road and your heart misses a beat. I had idealistic views of children and the stages they should go through.

Dear parents, please forgive me.

I am now you. And this is harder than I ever thought it would be. I salute you. And I hope you forgive me.

From a parent who once looked down on you.

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Did you really have to say that?

isaac smile

The picture of innocence. Not yet 5. Not yet speaking. Not understanding much of what others say or do. Happy, flapping, chest beating, walking up and down in lines in the pouring rain, red jumper wearing, up all night if you let him, lovable boy.

Isaac.

Blisfully unaware of what others think of him. Or say about him.

O, Thank you God!

Because the world is cruel to him at times. Difference is not yet understood or accepted.

I had a little glimpse of that last week watching Isaac running in and out of automatic doors at a museum. But that was tame behaviour. Compared to yesterday that is. Actually compared to a lot of days really. It’s hard to talk about the screaming, and the biting, and the fighting against you. The public tantrums and refusals, the head banging, the kicking and punching and the hair pulling. The ‘challenging behaviour’ that so often comes as part of the package with autism. The inability to sit at a table when you need him to, the embarrassment of touching things he shouldn’t, the high pitch scream that could empty an entire shopping centre.

Believe me, I know these things are hard to see. They are hard for me to see too.

But do you really have to add to my heartache, my embarrassment and my upset by saying something horrible?

Like ‘children like that should not be taken out where others have to see them’?

Did you really have to say that?

Do I really need to hear things like that?

I’ve also had:

‘Sometimes a good smack is all they need’

‘He’ll soon grow out of it’

‘Maybe you should read to him and he might learn to talk’

‘It’s good he goes to school so far away then you can just forget about him and no-one needs to see him’

‘That’s good his playground at school is an inner coutyard. I mean people walking past would not want to see him licking the fence or making silly noises or the like. Other kids might think that is ok.’

‘They can test for things like Down’s and stuff now. Did you not get that test?’

‘Think about it this way. You get extra money and a car now so that’s good.’

‘You shouldn’t be allowed to park in a disabled space when it’s for a child’

‘The disabled seats are not for kids you know!’

‘They never had such a thing as autism in my day. You just had to teach your kids back then’

 

I could go on. But you don’t need to hear them. Neither do I.

My beautiful boy is a treasure. He takes a tin of baked beans to bed to hold at night. He gets such delight watching drops of rain falling down a window. He gets excited about going out in the rain. He can spend hours simply pouring coins from one cup to another one. He is thankful for the food on his plate…so thankful in fact he will even try eating the plate! He can hand me a photo of an ice lolly when he wants one. He thinks nothing of watching TV with a swimming ring around his neck:

swimming ring

 

He is a real child. Someone’s child. My child. He is loved. He is treasured. He is stunning. He is different. But he isn’t less.

Words are so powerful. Isaac may not know what people are saying but I do. You are breaking my heart when you say things like this. You are breaking his dad’s heart. And his sister’s heart. And you are breaking God’s heart.

“See to it that you do not look down on one of these little ones. For I tell you that thier angels in heaven always see the face of my father in hevaen.” Matthew 18:10

Did you really have to say that?