"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.

From the DWP as part of my assessment for PIP it says "the claimant has four children this suggests that she has not always had these difficulties and possibly has been misdiagnosed". I was diagnosed as on the spectrum aged 31, my psychologist was appalled.

Someone once told me that they felt sorry for me for having ds. I don't know how anyone could think that is ever an ok thing to say.

Yep @Sleepyblueocean I HATE the sympathy response, had that so many times, but I bite back big time now.

@dementedma my DP has OCD, without any visible compulsions (he reassurance seeks and ruminates instead). I am so tired of people saying that they are "a bit OCD" because they like their house to be clean and tidy, or making out that OCD is a quirk. It's a horrible condition to have and causes my DP (and all people who have it) so much anxiety and upset. He is not open about it precisely because of these kinds of misconceptions.

I think dna tesing for oth aad and adhd would be a huge step forward.
It would take less time for diagnosis.
Hopefully fewer silly comments. Might pick up the 'quirky' characters in the wider family.
I think too it's harder for parents to be sure there's an issue if say they have asd /adhd themselves as that's their normal.
Eg dc1 struggles with friendships but actually is quite similar to how i was. They are both quite hyperactive but again that fits with family behaviour. Overemotional again not that unexpected. So i certainly think GP and uncles and aunts would struggle to 'see' it when they cant often see it in themselves.

I think there probably are a lot of undiagnosed adhd adults and children so outsiders looking and thinking x hasnt got it because y hasnt. Certainly looking as dc1 class there are other similar kids but that doesnt mean dc1 doesnt have adhd. And the other kid could be more or less affected/differently.

Also even seeing kids at parties vs school gates can be quite different even NT kids seem to play up for their parents etc (not masking), whereas my kid has no sense of authority and doesnt unerstand/notice that other kids dont do certain things at school

We use to get “ is he any better yet” from my dad until the penny finally dropped. But to be fair, apart from that all the grandparents have been very supportive.

@tartlet. My daughter rages at people who say they are "a bit OCD" because they like pictures to hang straight, or have their shoes paired up. She says you can't be a bit cancerous or a bit pregnant. You either are, or are not. OCD is horrible and all consuming. It has destroyed her life, and damaged ours. But from the outside, she looks "normal".

They can't do DNA testing yet because they haven't managed to isolate the gene markers for it. I follow the research about ADHD because I have it and occasionally something comes up that they are getting closer to isolating one strain but there are loads and it's not that simple. If you could just do a blood test and say categorically if someone has it or not, it would be a lot easier, but currently both are a clinical diagnosis, not a medical one (just means there is no test).

One thing that has helped me is making peace with the fact most people aren't going to be experts in ADHD and that actually, it is unreasonable to expect that - they might know a lot more than me, for example, about diabetes, or anaphylactic allergies, or dementia, or crohn's disease, or epilepsy. I've just picked things I know little to nothing about but I know people who deal with them day to day in relatives or themselves. To be perfectly honest I don't have the time, energy or inclination to go and become an expert in every single issue, although they might post awareness raising things on facebook, I rarely follow them and if I do I don't often retain much of the information unless it's relevant to me, and that has made me realise that of course everyone is in that same position. Most people know about a couple of things in detail and everything else they have a layperson's knowledge of, and that is the way it will always be. It's frustrating when the generally accepted lay knowledge about something is a myth, so these ought to be challenged, but it's definitely unreasonable to expect everyone to know every single nuance of what we are dealing with. But we should all be aware of our lack of knowledge and respectful of those who do deal with it more - not enough people do seem to have the humility to do that. They try to act like an expert when they are not, which is the part which can be so frustrating.

All my children are sensory seeking, they crave cuddles and touch. They literally will hang all over me and other adults. Love deep pressure massage.

DS1 is Autistic and I've known since pretty much forever that he has Autism. When he was younger I'd have more patience, kindness and tolerance, but when people offer advice/suggestions and nonsense opinions I tell them they're unqualified and uninteresting. It's rude, but it shuts them down.

I used to get it a lot while I was waiting for diagnosis for my son. I work in SEN, did my masters in communication and autistic spectrum, I wasn't just spitballing. It got to the point where they made me feel I had munchausen's. 'But he has such excellent eye contact'
When he did get diagnosed (just before he turned 3 so, you know, not questionable enough to wait and see for a couple more years as far as the consultant was concerned!) it died down a little bit and then the 'high functioning' conversations started.
I share a lot of info on my Facebook, try and be open and try to explain to people why those labels are damaging in a polite way. Most people are open to this and can understand. The ones who weren't were mostly dickheads anyway so I stopped bothering with them. I don't miss them and enjoy not having to justify my son every conversation we have.

I have found this so relieving... experience this from school, husband, everyone. Even after"understanding", DH still thinks DS needs to learn how to conform to get on.

Meanwhile I have just been sent this, and anyone who can be bothered to look at it will immediately see what it really means!

Cartoon Spectrum

thats great iborgia, explains it well

I think one of the reasons for this (including terminology such as "mildly" and "severely" autistic), is because people assume any visible functioning issues are all to do with the person being autistic.

When usually, people labelled as "severely" autistic, are either non-verbal (which alone, says nothing about the rest of their functioning), or have a learning disability as well, which is getting conflated with the autism.

People need educating that you are either autistic or you aren't, but that can appear in many different ways externally, and may be present along with other conditions affecting functioning.

I barely speak to MIL now because she knows my daughter isn't autistic, I find it amazing she knows more than the specialist. I have been told my daughter is just strong willed and difficult or just anti social.I have given up explaining now.
Older people especially IME often just don't get it.

I found that for me it was family members who did not want to admit it. Blinded by their desperation that it was a delay. I have had apologies especially when it was extremely clear that DS2 was never going to mainstream so around the age of 5/6 and he was not going to grow out of it.

for me ive had it from family members with SEN kids, who should know better as if to say well your...... is worse so it cant be, silly people its a spectrum!!!! i dont really bother now its exhausting

panic exactly, because unlike nt people we can't possibly be individuals.

With professionals, I do think part of the problem is whilst the medical profession and awareness in parents in relation to ASD has helped with diagnosis the provision and resources have not kept up. It leads to minimising the impact on the individual and instead places them in a group. It even puts parents against each other scraping for crumbs.
It was actually liberating when I stopped describing DS2 with Autism and changed to severe learning difficulties, no more anecdotes, no one tells me how lucky I am to have respite, no one tells me a miraculous cure is just round the corner. I also have no guilt in using the word severe which I always felt in relation to ASD as it implied that other children didn’t also face severe challenges irrelevant of their IQ.

Thanks so much to those who have described their children as sensory seeking. Describes DS2 to a T and makes a lot of sense.

The last nurse that told me I don’t look autistic (Was in hospital for UC) was told she was welcome to look for a fucking label. I get so sick of it. I can’t possibly be because I was a lecturer. If they had half a clue as to how difficult life is, it would in fact be so much better.

With so-called 'professionals' I always have to say ''What part of LIFELONG DISABILITIES do you not understand????''

It’s already been mentioned, but my favourite is “we’re all a bit on the spectrum”. Um, no, it doesn’t work like that.

My son is yet to be diagnosed with ASD but definitely will. His speech is still delayed at 4.5 and my FIL still says to me “You just have to keep talking to him”. Like I spend my days ignoring him.

Ironically, FIL is a shining example of undiagnosed autism, so maybe it’s that.

When the bystanders start tutting, someone I know always says, "My son is autistic. What's your problem?"

It usually shuts them up.