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”
or
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”
or
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?
Such a good post and so true. I think people make these comments without thinking of the harm they cause. I have done it myself describing other children as ‘normal’ and I was mortified when I said it as that wasn’t at all what I meant. I think and hope that people are much more aware of autism now which is good.
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Thank Nikki. I know most people don’t mean any harm with the comments they make but that doesn’t make it ok. If nobody points out that these things are hurtful then it’ll just continue so I hope this post can go a little way to educate people & raise more awareness of Autism & disabilities in general x
gymbunnymum recently posted…10 STEPS TO A LESS STRESSFUL UK HOLIDAY
My son has a significant speech and language delay and possible Autism (he will be having an Educational Psychological Evaluation next year. I am told he is borderline e for ASD. I am starting to think that he will probably be diagnosed with a speech disorder rather than ASD bit I’m just not sure. Either way I get your post. I think people are just trying to be polite and helpful but of course for us as parents some of these comments come across as stupid and frustrating. When I told someone that my son is being assessed for ASD her reply was that “he doesn’t look like one of ‘those kids’. I was it eerily speechless and horrified. Like you say if it was as simple as what ‘those kids’ look like, I wouldn’t be going through 2 years of appointments and assessments. I was actually too gobsmacked to reply. I also get the ‘he’ll grow out of it”. Usually from family. Maybe he will, but maybe he won’t and that’s ok.
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At the end of the day kids are kids, no body should be referred to as those kids, or having something wrong with them. We love them no matter what x
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This is such a great post. My other half is on the autistic spectrum and my friends and people I meet also ask lots of inappropriate questions.
Being autistic doesn’t mean you have a disease, it just means you think in a different way to neuro-typicals and that’s actually great.
I love having conversations with Jamie because we both has such different views and thoughts on everything. It’s great to see the world in a different way and from a different perspective. Yes, it’s difficult, we get the meltdowns too (and yes it’s not like a tantrum or regular adult frustration, in so different than that. I get frustrated but definitely not in the same way) and sometimes have difficulty communicating and understanding each other, but it’s all a learning curve. 🙂
Everyone on the spectrum is different as well and I do find that lots of people don’t understand that until I explain it to them. I don’t mind answering peoples questions at all and neither does Jamie, but it does get annoying when people say, well he can’t be autistic because he doesn’t do this or this and I’ve even had the ‘he doesn’t look autistic’ from people which I think is so rude, but I guess it’s just a lack of education on their part.
x #mummymondays
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I’m more than happy to explain things to people, or to answer any questions they have at all, in fact I’m glad that we can have a conversation about Autism but it’s the thoughtless comments that hurts, especially when they don’t know what your child goes through every day. Hopefully by writing posts like this it’ll go a little way to help x
gymbunnymum recently posted…10 STEPS TO A LESS STRESSFUL UK HOLIDAY
That people actually feel confident enough to make these comments is surprising. What is needed is an atmosphere where people can ask questions instead of assuming and jumping to conclusions about other people’s children. So important too, to take care about giving unsolicited help. Thanks for sharing and educating. #MummyMonday
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Thanks, I think everyone needs to learn a bit more tolerance and realise what things are not always as they seem. Just because you cannot see a disability doesn’t mean it’s not there. I hope this post can go a little way towards helping with this x
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Good post. My nephew is autistic and I bet my sister in law has had all of these! I’ll share it with her in a minute.
In the defense of some people, a few of these comments are people trying to empathise or understand something they have no experience with. I don’t think they are trying to offend. I hope not anyway.
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Thanks Tori. I understand that most people don’t mean to upset you but that doesn’t make it ok. If they don’t know it hurts then it’s likely they’ll say something hurtful to other people too without realising. I hope this post makes people think a little more about the impact it can have x
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Yep, yep, yep to all of these. I would add the following to anyone who isn’t sure how to speak to a parent of a child with autism: follow the parent’s lead. My daughter is 4 and a half and was diagnosed with autism last year. I was very upset at the time, but have through the ‘mourning’ process and have come out on the other side realising how utterly lucky I am to have her. I have wobbly emotional days like anyone else, but for the most part I try to be matter-of-fact about it. When I say, ‘Oh she has autism’ in a matter-of-fact way, please don’t act all horrified and sad-face. It’s not helpful and it doesn’t make me feel better. #MummyMonday
Exactly! And all parents are different stages of ‘mourning’ and ‘acceptance’ which is why some of the comments can be really, really hurtful. I used to end up in tears when people told me I just need to socialise him more, or he wasn’t Autistic it was just because I work from home so he spends a lot of time with me x
gymbunnymum recently posted…10 STEPS TO A LESS STRESSFUL UK HOLIDAY
So well written, I hope I am not guilty of any of these but I know they are common comments when people just don’t know what to say. My daughter doesn’t have autism but has other stuff we are working through, I have heard most of these and they make me see red. #sundaystars
I think a lot of the above can be said of any parents with a child with a disability. I hope this post will help raise awareness and make people rethink their comments x
gymbunnymum recently posted…10 STEPS TO A LESS STRESSFUL UK HOLIDAY
Some people are so thoughtless. The camel milk is hilarious though. Maybe you could offer it back to the person suggesting it as a cure for dimwit-itus ha ha ha
Farmerswifeandmummy recently posted…#MaternityMondays Week 29
I’m so glad the camel milk thing wasn’t suggested to me personally but another two Autism Parents have said they’ve had it said to them, it’s crazy that people think this would be the cure! x
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I can relate as I work with autistic children , they are all individual and their needs are quite different.
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Yes, so different hence why it’s a spectrum. Hopefully this post will help raise a little more Autism Awareness x
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This is a great post and a real eye opener to me. I do not know any children with autism and know very little about it but I hope I would be more sensitive to the family if I was to chat to a parent of an autistic child. I can relate to this as I am a mum of twins and have had more than my fair share of insensitive comments, (such as perfect strangers asking if they were IVF, and looking straight at my 3 year old girls and calling them ‘double trouble’). I suppose sometimes these people are just trying to be friendly but getting it so wrong but I can imagine that some of the comments you have to endure are extremely painful, especially because we all work so hard to care for our children, who we love dearly. #Twinkly Tuesday
So many people experience comments like these, and so many people get really hurt by it. I know I’ve broken down in tears on more than a handful of occasions by things people have said. Just because they didn’t realise it was hurtful doesn’t make it hurt any less, I hope that comes across in the post x
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Finally got round to reading this! And am so pleased I did!! These comments are infuriating, I love the fact that you put this with children with disabilities rather than Autism; ive had all these comments most of my life and sadly including adulthood. :/
I don’t know what it is between brain functioning and opening their mouths but some people really just do not think and realise how insensitive their comments can be.
Thanks Martyn, that means a lot coming from someone who has experienced it first hand
Gym Bunny Mummy recently posted…SERIOUSLY AWKWARD
Oh my word Toni, the shocking things people say never fails to astound me! I think unfortunately because there is a notion that folk are desperate to label their kids, it reduces empathy even further where the great unknown of Autism is concerned. It’s ironic really…
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I know! And the thing I found most surprising is that so many people get the same questions & comments, not just Autism specific either many disabled people & parents of disabled children get similar comments
Gym Bunny Mummy recently posted…LOVING MY LUSH HD BROWS
Whilst these are incredibly stupid things to say, I don’t think (most) people mean to be insensitive or hurtful – it’s just those silly things that stem from ignorance. Probably not much comfort, when you have to put up with it! ASD is such a complex thing to understand, but I think people tend to have some kind of default towards just saying something – anything – rather than maybe thinking of asking some questions if they don’t understand instead. Sorry you have to listen to such nonsense! (I do, however, think it is rather silly of all these professionals who have done years of research into autism to have missed the importance of camel milk! ;-)) #sharewithme
Camel milk?? This still gets me every time! One thing I’ve found through writing this is it’s not just us Autism parents that get these comments, other parents of children with various disabilities get similar comments, even adults who have lived with their disabilities all their life receive them too
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wow! Do people really say those things? Some people might mean well, but they can be so ignorant. I hope you put it to them straight. As a teacher, I have worked with a number of children with Autism, but they have all been so different and I can’t imagine how difficult it must be sometimes bringing up a child with the Autistic traits. I admire any parent who just keeps it together day to day #famjamlinky
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I’m also visiting from #brilliant blogposts
Thanks Carly, it’s so hard just getting through the day sometimes without people giving well meaning advice which actually totally belittles all the hard work you do. I’ve had people tell me I just need to take him out more, or he’s only like this because I work from home. They don’t know that we spend hours each day working on his therapies and that he has a Special Needs place at nursery x
Gym Bunny Mummy recently posted…LOVING MY LUSH HD BROWS
There seems to be way too many judgey people in this world if these are said but I can imagine they all have been said too though. I think some people don’t think before they speak not defending them and others just have no clue. There are so many different levels to autism that people don’t know about or aware of and not every child looks autism. I hope people educate themselves more and it’s good that you share these so people are more aware. Thank you so much for linking up to Share With Me #sharewithme
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Thanks Jenni, I know some people don’t realise they are making hurtful comments but that doesn’t make it ok. If they don’t know it’s hurtful then they will go on to say something similar to someone else. I hope this post goes a little way in raising Autism Awareness and makes people rethink their comments x
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This is an excellent post. People genuinely don’t think before they open their mouths.
I work for a national disability charity and if it’s ok I would love to share this with them & their social media also.
As a part of my job I also commission and publish parent blogs as a part of every day awareness raising (check out the #SENDblogspot on Twitter if you like!) and I’m always looking for star guest posts if you were ever interested in either sharing old posts or writing on new topics xx
Thanks Saffy, I would love for you to share, the more awareness the better. I’ll have a look at that hashtag on twitter too x
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I can’t believe people actually says these things. That is awful. It goes to show that people are scared of something they don’t understand. So they like to put labels on it or find reasons to explain it. But people just need more sympathy and to try to put themselves in someone else’s shoes. Thanks for linking up to #SundaysStars. Hugs Mrs H xxxx
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Thanks so much Sweet, the most shocking this is that so many people get the same comments, even across various disabilities & age groups too x
Gym Bunny Mummy recently posted…RECIPE | EASY TOMATO & RED ONION PUFF PASTRY TART
Really helpful, thank you. I don’t think I’ve said any of these, but knowing what to avoid is helpful. Even though there’s no malice in the comments, it’s still hurtful. #thelist
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So true. I really hope this post goes a little way to help raise awareness x
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People’s ignorance of autism is very sad, but as you make so clear, it’s not the ignorance which is so upsetting, it’s the way people express this. Any assumption of woefully ignorant ‘expertise’ is somewhat outrageous. I read the other day that an often asked question of people with children with autism is ‘have you thought about his diet?’ (Like your camel milk thing) Seriously. While diet is important for any child, it trivialises autism and all special needs to suggest that somehow a different diet could ‘cure’ it. And there’s also some implicit blame there. I was outraged. Great post.
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I think you’ve hit the nail on the head, it’s the trivialising it that hurts. When we spend ours each day on behavioural therapy & someone says you just need to take him out more or change his diet. There wouldn’t be so many specialists & therapy involved if it was just that simple
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Think I’ve had all of these. The worst one ever was when a ‘friend’ asked if I was jealous of her normal children I wrote a post about that. http://diaryofanimperfectmum.blogspot.nl/2015/05/are-you-jealous.html?m=1
I also find questions at the school gate hard and wrote about that too.
http://diaryofanimperfectmum.blogspot.nl/2015/05/what-not-to-ask-special-needs-parent-at.html?m=1
How awful, I can’t believe people think it’s okay to say these things. I’m going to have a look at your posts too x
gymbunnymum recently posted…WHEN THERE’S NO SMILING, FAMILY PHOTO’S…
Thanks for this really insightful post Hun. I’m guilty of at least one of those – not re autism but other things. I’ve tried to be helpful to support friends but didn’t realise I may just be causing them harm and they’ve been really polite and accepting of the help. I guess for some it’s the not knowing what to say really. Thank you for sharing this – really helpful x
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I’m glad this helped, I’m not about people bashing as this would make me just as bad but by sharing these examples I hope it can really help to raise awareness x
Gym Bunny Mummy recently posted…LOVING MY LUSH HD BROWS
Wow, I can’t believe some of the things people come out with…I know that people generally mean well but some of this is just silly bananas! #alittlebitofeverything
It really is, especially as 99% of what I’ve written has been said to other people too x
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Yes I can relate! My son has ADHD and some of the doctors we have seen think he may be autistic too. It is hard to get people to understand that some of their suggestions won’t change that. I don’t know why people have to say such things or be so cruel. If they truly don’t understand it is best to ask and not make comments. Very awesome post! Thanks for linking up with #Alittlebitofeverything. Have a great day!
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Thanks so much Stacey, it’s such a shame so many of us have to endure these kind of comments. Hopefully we’ll start to see more awareness x
Gym Bunny Mummy recently posted…LOVING MY LUSH HD BROWS
I hope so. People tend to be rude about what they don’t understand. I wish they wouldn’t be like that.
Stacey Crowder recently posted…A Little Bit of Everything Link-Up
I know some people don’t mean to be rude but that doesn’t make it OK x
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Great post and very insightful! I can honestly say I know very little about autism but I can’t believe people actually say stuff like that. Thank you for sharing this! x #brilliantblogposts
Thanks so much for such a lovely comment x
gymbunnymum recently posted…WHEN THERE’S NO SMILING, FAMILY PHOTO’S…
I’m really shocked that people come out with these things! Maybe because they feel awkward and want to say something but don’t know very much about autism, but some of this stuff is just plain rude. I can’t imagine how hard it must be when your child has a disability, you really don’t need to the stress of dealing with people’s ‘helpful’ comments too. Xx
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Thanks so much, that’s the whole point of the post. Our daily lives are stressful enough without having to deal with other people too x
gymbunnymum recently posted…WHEN THERE’S NO SMILING, FAMILY PHOTO’S…
It can be so hard both as a parent hearing these things about their precious baby and as someone wanting to say something supportive but not knowing the right words. Some of these comments are totally out of order but I can see that some will have come from an older generation who don’t understand or even ‘believe in’ things like Autism, Dyslexia etc. Not that that makes it right but you definitely need to ignore anyone that isn’t supportive and take heart from the fact that more and more people are becoming educated and aware. Your boy is a cutie! #bestandworst
Thanks so much. Every day is hard work and comments like these don’t make it any easier x
gymbunnymum recently posted…WHEN THERE’S NO SMILING, FAMILY PHOTO’S…
I’ve written a very similar post recently about my daughter – she has juvenile rheumatoid arthritis and has just been diagnosed with Crohn’s disease last month.
I’ve experienced many similar situations with her health and it annoys the hell out of me. It’s like I’ve caused these illnesses by not feeding her this, feeding her that or something else people decide you should have of not done.
My son has Aspergers but luckily we have had too many comments regarding what I’ve done wrong.
They are so many people who need to think before they say something snd also read up on an illness before they tell you what you should be doing.
Great post
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Thanks so much, it’s such a shame so many of us have had a similar experience x
gymbunnymum recently posted…WHEN THERE’S NO SMILING, FAMILY PHOTO’S…
Such a good post but I hate that people say these things. I don’t have a child with a disability (as far as I know) but I’ve worked in special needs education for 10 years, 8 of those supporting children and young adults with autism so I’ve had the throwaway and downright nasty comments and they hurt me. I can’t imagine receiving them as a parent xx
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Thanks Hannah. I know people don’t always mean to be nasty but it doesn’t stop the comments being hurtful does it? x
gymbunnymum recently posted…WHEN THERE’S NO SMILING, FAMILY PHOTO’S…
This is genuinely a really interesting post and great for people who just have no idea about the autistic spectrum. I think sometimes people are trying to be nice or are not sure what to say but a list like this is really helpful. I have heard about special diets for autism but don’t know too much about it. Camel milk sounds a bit extreme though! Thanks so much for linking up to #bestandworst and see you again I hope xx
Thanks Sarah, I really do hope it goes a little way to raising Autism awareness x
gymbunnymum recently posted…WHEN THERE’S NO SMILING, FAMILY PHOTO’S…
Wow! What an amazing post! I shared this on my twitter and facebook. My 13 year old has Autism. He was diagnosed when he was 4 and I have heard almost all of these but the ones that really got me up when he was small was being accused of not socializing him enough. I took him to playgrounds to play with other kids. I took him to playgroups and did my best to socialize him with family. The person who accused me had just met me and my son had just met her son. He was also 18 months old while her son was almost 3. Another thing that makes me see red is when people have said “Are you sure he’s autistic?” Or, “Are you sure he’s not just having a temper tantrum?” The temper tantrum comment came right after that person accused me of spoiling my child. First of all, NO ONE knows my child better than me. I even had an old suitor tell me once that because he had worked along side an Autistic person once, he knew how to handle my son (he was trying to get me to take the boys to a baseball game and I told him that my son can’t handle stadiums. It’s too much noise for him) Apparently, he thought he knew my son better than I did! Let’s just say that guy is history after I had it out with him. Thanks for writing this. It has inspired me to write my own about my experience with people and my son.
OMG how awful! We struggle every day dealing with their Autistic traits 24 hours a day then someone who’s spent 5 mins with us think they know everything about our kids & Autism. It drives me mad. You sound like a fab mum xx
gymbunnymum recently posted…WHEN THERE’S NO SMILING, FAMILY PHOTO’S…
Big hugs sweets. Sorry it’s taken me so long to read this. I find posts about autism still so hard to read. I don’t want to become a victim (woe is me, my life is so much harder than yours) so find I can only dip in and out of the autism world. Also it makes me too sad to deal with some days.
BUT this is a super post and well done on writing it. I hear so many of these things, but I’m happy to tell people they wrong and explain why. I don’t let it hurt me, if I can. Other people’s issues are not mine to have. Plus I’ve found a fab way of explaining it that people seem to get. “All PC’s run the same way. But not all PCs run Windows. He’s my Linux boy”. xxxx
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That’s a fab way to look at it sweet. I’m definitely building a thicker skin the further along the journey we go x
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Thanks for sharing with #bestandworst hun…have read this before and commented 🙂 See you soon xx
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Thanks lovely x
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This is a great post. It’s hard to believe that some of those comments were made. It’s a lack of understanding and naivety. I can’t claim to know anything about autism but I love your honesty in your posts. X
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This post is really interesting, thanks for linking to Talk about it Tuesday. My son had selective mutism when he was small, one stranger called him ignorant as she spoke to him & he didn’t reply, some people are so insensitive.
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Cannot believe some of those have been said. People are very hurtful and can be quite mean. You’re doing the most amazing job and this post is just brilliant at raising the awareness of autism xx
My parents always hope that their Children will grow up happily and freedom. Don’t say any word of this list. Because this make many people be hurt
Im sat here in tears after being told – and I dont think there was any malicious intent just thoughtlessness – that my laid back son doesnt ‘look’ like he has autism – he does, he just happened to be laid back because he was glued to his tablet and playing one of his favourite games, take his tablet/DS away and he soon plays up – worst thing is that the comment came from a special needs teacher, in her defence she teaches children with severe autism but all the same her comment was thoughtless, very upsetting and misplaced.
I know I’m late to the game here but I just wanted to say thank you for writing such a wonderful post. My little boy is almost 3 and the amount of time’s we’ve heard those comments is already ridiculous! I’m going to share this in the hopes that my friends and relatives see exactly what I mean!
Thanks, from one Autism mum to another! <3