"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.

I hate the "we are all a bit autistic" comment. Really insulting to my son who was non verbal until 6 and still cant read or write. We might alk have traits, but were not all on the spectrum.

I ignore that comment. Get it from everyone even professionals who work with my son.

I have some dog traits namely that I'm energetic, eager to please, and easy to train.

Doesn't make me a fucking dog though

After the community paediatricians had agreed DS was showing enough signs to warrant an assessment for ASD, I saw our GP to update him. He said he could tell from just looking at DS that he definitely wasn't autistic. Thank fuck I wasn't relying on him for the referral or assessment.

I think it's most frustrating when professionals are completely ignorant. My friend had teachers and GPs who had no idea about masking telling her since DS could behave at school or during a 10 minute appointment he was definitely just manipulating his mum and being spoiled when he melted down at home.

Yanbu, it's a massive PITA.

See, this is the issue though, some people with ASD can and do function perfectly well

No they don't.

If you're basing that statement on only what you see of them in a certain situation, you've only seen the mask.

The diagnostic criteria for autism are here, www.autism.org.uk/about/diagnosis.aspx
"in order for a diagnosis to be made, a person will usually be assessed as having had persistent difficulties with social communication and social interaction and restricted and repetitive patterns of behaviours, activities or interests (this includes sensory behaviour), since early childhood, to the extent that these 'limit and impair everyday functioning'."
Pay particular attention to the phrase to the extent that these limit and impair everyday functioning
Because without that condition, then a diagnosis will not be given.

The fault lies with you in not being able to see or understand when an autistic person is struggling to keep the mask in place. You not being able to see when either sensory circumstances or other peoples' behaviour or a combination of both are about to become too overwhelming for the autistic person.

Just because you don't see that, you then assume there's no problem and confidently pronounce that 'some people with ASD can and do function perfectly well' when nothing could be further from the truth.

This blog article is well-written and may help some people unfamiliar with autism understand some of an autistic person's difficulties. theaspergian.com/2019/05/04/its-a-spectrum-doesnt-mean-what-you-think/

Another thing that pisses me off, people questioning you after a 5 second flat observation - are you sure he has ASC?

When I say ds1 was diagnosed on his first CAMHs visit, some people question his diagnosis, as he masks well, is very calm and well behaved and affectionate (until he gets home!) he shuts down rather than a meltdown and he thrives on rules and routine.

When I explain that we were on the waiting list for 2 and a half years to get to his assessment and Aspergers diagnosis, and during that time he had input from SALT, OT's and the dietition with lots of observational evidence from nursery and school, only then do they backtrack. He was diagnosed on his first assessment because of all the evidence gathered over time. it is incrediably hard to meet the criteria for referral let alone diagnosis in our area, the waiting lists are still very long. Anyone who quips that ASC/ADHD are over diagnosed or easy to get 'labels' have no clue whatsoever.

YANBU. Not only is it trite and awful but sooo ableist. What they are basically saying is "don't worry they look "normal".

I get told I don't look autistic all the time.

Well no offence but it's not my goal in life to "appear" neurotypical. It's not a compliment! it's actually very offensive.

I get it for my son as well. He has high support needs and attends special school, and no he doesn't "look" autistic but he needs constant care/supervision. No it's not a compliment for him either. He very much is autistic. And there is nothing wrong with that either.

We are who we are, and I wouldn't want either of us any different.

Oh! Another 'delight' from the SENCo, ds1 'chews' everything, all the time, it soothes him When we tried to tell her how much anxiety ds1 has especially around school after she questioned his 'chewing', and that he is like a Coke bottle, sat fizzing all day with the top screwed firmly in place until he gets home and unloads, she replied 'we get told that a lot by other parents but we just don't see it here'

Ffs! If a number of different parents of children with SEN are telling you similar things, then listen! don't reply with a patronising tone of disbelief!

Just because you don't see that, you then assume there's no problem and confidently pronounce that 'some people with ASD can and do function perfectly well' when nothing could be further from the truth.

Oldest DS appears to be functioning perfectly well and has a very high verbal ability so comes across as an articulate, chatty boy. His other cognitive abilities all scored low and low average, cognitive speaking he is behind his chronological age so while he can chat at you like any other 10 year old (and it will be at you not with you because he doesn't do reciprocal conversations), his other abilities - working memory, emotional literacy, visual special awareness, fluid reasoning, etc - are on par with those of your average 5-6 year old. He is very vulnerable as he has poor social skills, no understanding of danger/risk, and cannot interpret or understand other people's intentions (amongst other difficulties) but people don't see that. They think because he talks and is affectionate and eats then he can't be autistic.

I will tell you one thing though, for 9 years I had people telling me all of the crap people have mentioned up thread, GP refused to do a referral, CAMHS no help at all etc. (And I really, really needed the help when he was small). We moved to a different area and DS became mute in school when he was 9, prompting a new CAMHS referral by the SENCO. They were fantastic. The assessor said when they did the assessment it was one of the clearest assessments she had ever done. I cried because someone finally believed me.

I cried too @Lex234 because someone finally believed me after years of being told DS was attention seeking, that I simply had to be more firm with him, that it was due to me having another children, due to me working, that he was just immature, that it was all in my head.

Ignorance and well meaning can only be used as an excuse once. After the parent explains why,how etc. (And a lot of parents will go to painful lengths to explain their and their child's struggle) any comments along those lines are stupid or malicious.

What I have noticed from friends (my own DD is NT) is how lonely,demoralising and doubt inducing the road to a diagnosis can be. How they question themselves a lot, have to fight professionals , have their parenting questioned, attend parenting courses etc and having to insist that no their child is not "fiiiine".

One friend burst into tears when I acknowledged her worries and the very obvious signs to me that at least an assessment was definitely needed. She said besides her husband, I was the only one to say it and she felt so lonely and like she was going crazy when everyone else said her kid is "fiine" or just needs some discipline or whatever other bullshit.

I'm no expert. I never will be . I still hear/see/read things I never would've even considered and I'm still learning,listening and asking questions but I came in this country thinking autism was non verbal rocking in a corner,mostly from books. I'm obviously past that point now.Ignorance is no excuse. Having only NT children is no excuse.

I can identify with that so much @hohohoik I wish our experience wasnt as common as it seems to be

I think part of the problem lies with the change in diagnostic labels. Now a child who previously would have been diagnosed with Aspergers now has Autistic Spectrum condition.

The public's stereotypical image of a child with autism is likely to be different to a child with a past diagnosis of Aspergers.

Now when they are presented with a child or adult with ASC they cannot put the two together and often make inappropriate comments.

So no, the child they see, often heavily masking and hiding their distress doesn't look like their typical mental image of an autistic child. It's public ignorance.

But that doesn't mean the labels shouldn't change. In fact it would probably be useful for everyone if autism spectrum conditions were separated in the public mind from intellectual disability and/or global delay, since just because the two sometimes go together does not mean that the ID or GDD is autism, which is what a lot of people seem to think.

@BertieBotts I agree, and yes labels should change. The public just haven't caught up and it will probably take decades.

I think this thread highlights just how much ignorance still exists.

@SisterSistine exactly thank you so much for sharing it’s actually made me a bit emotional to read that somebody gets it (I know that makes me sound like a prat but in my RL nobody seems to).

DS is only 2 but I’m seeing a lot of what I think (I’m no expert of course) are sensory seeker behaviours. He doesn’t have any wariness around strangers, he’s seemingly fearless, he likes to headbutt the bars of his cot before going to sleep but does it in a very precise way (if that makes sense?) he licks, chews, sucks on a lot of things but his comfort blanket is his go to when overwhelmed. Everybody tells me it’s just tiredness because he soothes himself with it very much the same way as when going to sleep, but they don’t listen when I say it’s because they’re overstimulating him in ways that really do upset him, but he’s not much of a crier, rarely he will but it takes a lot to build to. He’s more likely to secrete himself away from the source of his frustration and suck on his blanket or stroke his face with it. If it’s when we’re at home alone with no visitors he will come and curl up on my lap and likes to be held close/tight.

But if there are visitors they usually keep pestering him (look at this, give me kisses, stack this, your DS can do it so I know you can etc.) then he does get to the point where he lets loose and calming him afterwards would be a lot easier if they didn’t then laugh and say ‘ooh terrible twos’.

Sorry to rant again but I have been wondering if I’m going mad as I seem to be the only one that sees it, aside from his HV and Paediatrician nobody else really talks to me about it. DH clams up whenever it’s mentioned or minimises.

I think it's meant in a well meaning way, but totally ignorant. It doesn't bother me as much as 'we're all on the spectrum somewhere'. This was actually said to me by the primary school senco when she was minimising and denying any issues worthy of a diagnosis. One private diagnosis and a spell of anxiety and school refusal later and I think she's now starting to get it, bit too late for us and we're moving schools, but it makes me sad for all the other ASD girls out there struggling to get the help they need because even so called professionals don't recognise their difficulties.

Sorry that was meant to be Dsis can do it, they’re twins

Oh my god yes. The ‘everyone’s a bit autistic’ one is a pure charm.

'But he doesn't look like he has autism..'
'You don't look stupid. Appearances can be so deceptive, can't they?'

I’m not sure changing labels would help or even be possible simply because autism is such a spectrum. Even the current high/low functioning labels don’t work because it’s not so simple to put people into boxes like that. Some people may be very able in one area but have massive difficulties in another.

I don’t think further compartmentalising will do anything to change stigma or stereotype either, more likely create mode

But when it comes from professionals who work with your children, who should be fully trained, and also should behave in a professional manner and not come out with uneducated shite - that's when it makes me really angry

I have a a social worker, works with families with 'problem children'. Her opinion is that ADHD doesn't exist and it's down to bad parenting and poor diet It took all my strength to stop myself saying something to her, she knows fine my ds has ADHD.

think it's borne out of the need to criticise the parent.
As in, "he doesn't look autistic so he's probably just misbehaving because you're a shit parent".

Tbh what I find harder to bear is when I'm out in public and people don't know DS has autism; all I get is very judgy looks when he is "misbehaving". That's when I'd like to shout, "He's autistic FFS!" just so they stop staring.

^^
I get thet. DC cant function in society, has extreme social anxiety due to her Autism/ADHD but of course, I'm a shit parent who cant be bothered teaching her, and just wants her to be a lazy benefit cheat all her existence.-she doesn't have a quality of life, nor do I as her FT carer, we just both exist. Not her fault,.