"he doesn't look autistic""doesn't seem asd/adhd just strong willed etc" and other gems, why on earth do people say these things to parents? or similar?

[staydazzling]

Thank god its a good while since someone said this to me, as i dont pander. But ive heard of other friends with SEN or online groups that this kind of thing is still rife, "well meaning relatives" suggesting these after seeing said and handful of times each year , i do remember those really awkward, wtf kind of conversations with well meaning people, but why do people do it? Aswell as often making the person look foolish or uninformed i find its its quite arrogant actually and carries an assumption they know better than you. I do appreciate some people might feel they are being helpful but i suspect its a small group.

Sirzy my dd and a couple of her autistic friends are very good at maths which means we get the nodding and "Oh of course she is good at maths" as if that's significant. The fact that she has parents and grandparents who were all involved in STEM might be more important...

Is half the issue people don't really know what Autism is?

Half the issue is that a lot of people don't believe it exists because it's "such a new thing" and there were "no autistic kids when I was a child", a lot of people think it is a cover up for bad parenting or poor behaviour, and a lot of people think it is caused by bad parenting/diet/vaccines and can therefore be cured/stopped if the parent changes whatever it is that caused it. There is a lot of overlap between the three groups.

There is a lot of ignorance too, mainly from people who think have a disabled child could never ever happen to them and therefore have a need to validate their own good luck by trying to minimise the bad luck of others.

And let's not mention the impeccably high standards that the parents of autistic children are held to. It swings between the sympathetic head tilt with a soft-spoken "how do you do it? You're amazing" and the venomous "autism is no excuse for . You know he/she is autistic, you should have been aware of the situation and removed them before it happened!" Parents of autistic children are expected to be both saintly and psychic.

Yanbu although I don't believe they mean harm many people really do spout the most ridiculous nonsense sometimes. I don't think it's just with autism etc. They manage to do it on a variety of different circumstances. I think many people fail to grasp that it's OK not to say anything and just to accept what is in front of them. They feel the need to say stuff instead even if it's uneducated nonsense.

Yanbu but I'm sick of telling people it's a spectrum my son has severe autism and learning disabilities I get sick of people telling me he must have a special talent or think he will be just like Anne ( name escapes me) from the chase there is so much ignorance about Autism .

I’ve had “he doesn’t look autistic” before. What shuts them up is when I reply with “so tell me, exactly what do you think autistic people look like?”

Yep and sometimes you even get that attitude off other parents of children with autism, @HoHoHoik I have seeming on here "oh autism is no.excuse my child with autism would never do that" ( what ever inappropriate behaviour the child was exhibiting ) as though everybody who has autism behaves exactly the same way .

I dont think all these comments come from a bad place, although some do. Some come from kindness its a clumsy 'you must be doung a good job as we cant see it' and i think some of my relatives are desperate for it all to be ok they try a will it ok by saying it is. Like a self reassurance that he is coping. Some people say things and i reply its not really like that and they want to understand more.

'I just don't think he's Autistic' said by the SENCo two days before his CAMHs assessment, he was diagnosed on the first visit. Followed by her refusal to let him wear ear defenders at lunch time as its would single him out' she then removed him from the special needs register not long after as, 'it wasn't affecting him academically' all his was help taken away. His class teacher hit the roof ds1 would sit at her desk at the front of the class to try to block out the sensory overload. Complaints about her incompetence fell on deaf ears and families of children with SEN are all leaving that 'outstanding' school.

We pulled him out. Yes he is very strong on maths as he is a calendric calculator but he struggled so much socially and in other areas academically at his old school. The other gem we get often is 'when you're old enough we're going to the Casino' or 'oh, he's like Rain-man'. No he isn't you prick!

We've been lucky with family as they all 'get' it but the so called trained professionals have been the worst. Thankfully he's at a much better school now.

I actually think people like Anne Heggarty being very open about her autism is only a positive for a certain section of autism because so many people now expect that all autistics can achieve the same, when people say to me “doesn’t that give you faith for the future for ds?” They can’t see that no it doesn’t because he won’t even be able to live independently as an adult so her doing well has no bearing on his autism.

Absolutely @Sirzy and Autism awareness focussess so much on one side of the spectrum which is obviously good for some people but there is never much focus on the other side of the spectrum or anywhere in between ime.

Oh God, my aunt. He's a normal little boy. No, he's really not. Normal little boys stop moving occasionally. And saying it in front of him doesn't help him to control his impulses.

Jenpop in my aunt's case, it's coming from a narcissistic, controlling place.

PerpetualCircle interestingly, those are the exact words that my psychiatrist used when she diagnosed me, so it is a thing.

It’s because it is hugely over-diagnosed.
Many excellent online articles back this up. (One in The Times a while back springs to mind)
Very sad for genuinely autistic people who then have to put up with this crap.

Vastly over diagnosed or people who once masked well so slipped through the net are now more likely to be diagnosed and hopefully receive the help and support needed to stop them having the issues many adults who later find out they are autistic have?

I think it's because autism is such a wide spectrum. So people might know one person diagnosed with autism who is mute, unable to read or write and still in nappies and they think that is the blanket diagnostic for autism. Therefore someone with high functioning autism 'can't be autistic' because they can do the things that the person they know to be diagnosed can't.

There needs to be more education about the sheer breadth of the spectrum.

Also, people wilfully misunderstand. My friend is often told by relatives that her adult son is 'just annoying', they shout at him and refuse to allow some of his coping behaviours. Yet their grandchild, who is also diagnosed with autism, is treated very differently. Because it's their grandchild.

But she’s so clever

It is not hugely over diagnosed CaptainButtock, whatever the Times might say. It takes a very long time to get a diagnosis in the UK and a lot of pushing to see the right people and not just be sent on another parenting course.

@CaptainButtock it really isn't. It's actually incredibly difficult and can take years to get a diagnosis. I would choose your sources more carefully.

Ds was diagnosed in September and his Senco said to us 'we are all a bit autistic'. She has not been helpful through this whole process and continues to not support Ds.

Is it over diagnosed now? I was under the impression that a child or adult had to meet the diagnostic criteria. Unfortunately Ds's diagnosis has not led to any help either in or out of school. We were given a handout by the paediatrician with local charities on and told that was it, zero support.

Because neurotypicals want everyone to be like them. They feel like asc is a bad thing.

@Shanny81

“ People who decide that “everyone is on the spectrum somewhere” has no idea how genuinely fucking difficult it is to function with autism”

See, this is the issue though, some people with ASD can and do function perfectly well and yet still received a diagnosis. If everyone with ASD is all lumped in together and the person only knows people who are high functioning then that’s probably where they get that impression from. Tbh I’m not sure that it’s the best approach to bundle everyone together under the ‘spectrum of ASD’ when there are such very obvious differences between both sides.

Just because to you externally someone look to be getting on with day to day life and is diagnosed autistic that doesn’t mean that every day isn’t a struggle for them, just that they have learnt how to mask it

I'm sure autism isn't a bad thing for some people on the spectrum but it's not a good thing for my son has severely disabled by his autism.

"Don't you think she'd be better behaved if you hadn't had a diagnosis. Now she knows she's a proper little victim about it."

I unpacked a lot about later diagnosis in girls and women, masking and the likelihood that the person talking to me who told me every day of my life that "you're just an akward stubborn ungrateful sort of person " has given me a lot of emotional cap on top of a missed diagnosis in my youth by deciding "autism is just about poor parenting".

Basically a relative I consider superfluous to my life now.