How do people not "believe" in Autism?

[MissPollyHadADolly19]

Just that really, bit of a rant more than anything.
It's not the tooth fairy or Santa, it's a recognised disorder!!

Relative struggling with her DC who's on the spectrum and partner believes it's just shit parenting (obviously not from him cos he's perfect, only the mother gets blames of course )

How do people really not believe in Autism? Or any mental illness for that matter.

Rubbing autism is a spectrum not every one is high functioning some kids won't ever learn to behave and appropriately know matter how much time parents put in .

@nameusernameuser I'm inclined to let anyone who manages to sucessfully fake an extra chromosome to just get on with it, on the assumption that they must be some sort of genius. That would have to be some serious effort just for some extra money.

My ex is similar to your relative's partner. Basically if these men can find something to pin on mothers they will. It's no coincidence doctors used to call it "refridgerator mother syndrome"

@Chouetted your experience sounds similar to mine growing up, minus the university part.

It's sad to see how many people have been affected by others not accepting ASD/ADHD. Just wondering for those who managed to get an EHCP, how long did it take from the diagnosis was this achieved? Luckily my relatives DCs school has been fantastic even prior to the formal diagnosis but there's only so much they can do without the EHCP. So any advice would be welcomed.

@PinguForPresident what you have said is completely true! Routine and order is a dream for many with ASD and they would undoubtedly go unnoticed until the routine changed, resulting in a meltdown.

I don't understand why some people think it's so easy to get a formal diagnosis. It isn't like getting antibiotics from a GP where you can walk in and complain of a cough/sore throat and walk out knowing you have a upper respiratory infection or tonsellitus. It's a gruelling process, often by the time you have the right support the damage has already had too much of an impact.

When I was growing up my DM knew there was something not right from around age 4. I wasn't diagnosed until I was 18 and that was after years of CAMHs, educational physiologist meetings, CBT and numerous other assessments. I had a really shit time growing up and I can only begin to imagine the pressure on my DM, being told she had to go on "parenting courses" to resolve my behaviour. I'm thankful there's so much more awareness now but still, the level of ignorance is astonishing. It's really sad, for the kids and parents

I’ll need a hard hat for this but I think it’s because people use the term so loosely these days.

A child misbehaves and because their parent cannot be bothered to parent then they say they have ASD. Some people use the term for benefits etc. I say this as a parent of a child with ASD and it’s scary how many people blame everything on it. In my opinion you can tell a mile away if it’s real ASD or if it’s just lazy parenting.

I don’t think the rates of autism have increased, I think we are just more open to it now.

You don't get benefits by saying your child has autism. Anyone that had applied for Dla for their child would know that.

And sometimes even a diagnosis alone won't entitle to ainvolvec to benefits ,as it's how it affects the person ,if they are deemed not to need extra care than a child of a similar age than they won't get DLA ,diagnosis or no diagnosis ,plus the decision makers don't just take the parents word for it they need evidence from whichever professional,s are involved .

If you spend any time on ASD support groups you WILL hear stories of parents who had to go on parenting courses before getting anywhere near a diagnosis. It's not unusual.
I also agree with Pingu. School was far more autism friendly in the 70s and 80s than it is now in many ways. Dd is hypercompliant so she's unlikely to break a rule except under duress. She would be much happier in quiet orderly lessons where nobody mucked about.

You definitely don’t get benefits on diagnosis alone, you need proof that your child requires more care than that of the average child the same age as them.

I know it exists, but when I was at school children were not allowed to act up at all.
We must have had children who could have been on the scale but they didn't stand out, I do wonder if it might be senses being overloaded by the amount of stimulus available to them.
Ask your older parents about it, we had maybe three boys in 60 children, and they were made to behave by both parents and teachers, they almost never played up and never enough to be excluded.

You don’t need a diagnosis for DLA, I didn’t say that. And neither do you need a letter of support from a professional. A supper letter from school along with a support plan can suffice.

EleanorReally
teachers in particular need educating! that is shameful

How would you want this to be done?
And just FYI its some teachers
I have taught many children with ASD, all are different.

As the saying goes "Once you've met a person with autism you've met a person with autism".

I once got flamed on here for saying that I taught a child with ASD that was creative, I was told that couldn't happen.

ASD as has been said is too broad a term for a lot of people to comprehend.

@mummmy2017 lots of autistic children don't 'act up'. They obey rules, try desperately to cling on to order and routine and fall apart quietly until they can disintegrate somewhere safe like home.

Autism isn't always visible.
Don't forget many people minimise the signs of Autism, teachers can "not see" autistic traits in children who are not disruptive in the classroom and who are academically average or above.
Family members can also spectacularly miss traits or minimise then when they are seen so tell a parent wanting a diagnosis they are fussing over nothing.
GPs can be unwilling to refer if there's no support from school.

Parenting a child with this presentation of autism is difficult because you're constantly fobbed off by the very people who should be able to access and provide help and you are constantly told your child doesn't need any, they 'just need to try harder' in about 20 different ways.

Unbelievable isn't it? how many people don't get how hard it is & in the past was to get by Child Development centres - where your dc was sent because both you& the school & the school dr & nurse were concerned about your dc. The symptoms don't add up - you keep going back each time & repeat & repeat & ask what is this the school doesn't understand but they are concerned - your told your child doesn't need a diagnosis. the first time your child was referred was early in infant school but you noticed things before but no one took your concerns seriously. So, your dc grows & hits adolescence & still you haven't got any further. They are diagnosed with epilepsy (strangely enough the then dr at the Child Development Centre had a speciality in epilepsy) put on medication. You check out the diagnosis it doesn't add up with how things present. You watch a program on TV after being told by speech therapist & it begins to make sense - the symptoms, the behaviours they point to ASD - so when you go back to the clinic you ask - new dr sneers at you (yes she does) & says again dc wouldn't benefit from diagnosis. You contact NAS (National Autistic Society) & ask advice - they point you to a NHS clinic in your county - You go back to dr & insist your dc goes there - you have to see child psychologist first who doesn't even talk to your dc but only at you & your dh & tries to put you off. You ring back after appointment & state your dc needs this. Eventually dc gets appointment - within 2 hours of being there & them talking to you & examining dc separately, they state -your dc has ASD
it only took 9 years of trying to get diagnosis & the school was behind us.
that was many years ago - & yes it makes me angry when I know how many people have been through the same thing & the assumption that getting a diagnosis is easy & can be faked. Ignorant

Anyone who thinks it's easy to get a diagnosis should read this thread:

www.mumsnet.com/Talk/am_i_being_unreasonable/3653814-to-wonder-why-services-aimed-at-helping-children-with-SEN-i-e-CDC-CAHMS-so-unkind-and-cruel-to-parents?pg=1&order=

To be fair my son did get a diagnosis very quickly and he was three and a half ,but it was blindingly obvious and he does have very complex needs

Sink I'm really sorry to read about your twins; that must have been devastating. I know this is not related to the thread and please feel free to ignore if you'd rather not share but do you know how and why regression occurs? I thought that Autistic and NT brains were literally different in some way and, although I have heard of regression, I thought it was a worsening of ASD symptons due to external circumstance. I didn't know it was possible to move from NT to ASD. Again, please ignore if it's upsetting, it's not your job to educate internet randoms!

Back on topic, I've never heard anyone question the existence of ASD but I have heard individuals' professional diagnoses questioned sometimes and very often hear adult self diagnoses outright disbelieved and even mocked.

community.babycenter.com/imageserve/24/000/440/7NfKQ63NlZQmXhbPGBc1XCcNFfR9hRIr_lg.jpg.pagespeed.ce.ieppOgUOdF.jpg

THIS!

@StripeyChina😂

A child misbehaves and because their parent cannot be bothered to parent then they say they have ASD. Some people use the term for benefits etc. I say this as a parent of a child with ASD and it’s scary how many people blame everything on it. In my opinion you can tell a mile away if it’s real ASD or if it’s just lazy parenting.

I respectfully disagree with this. You can't just use Autism for benefits without significant evidence. You can't tell a mile away if a child has Autism and you cannot possibly imagine that you'd watch a parent interact with a child and know immediately if the child has Autism. Even specialists take time to watch and interact with children before forming any kind of diagnosis.

DS1 has Autism. We've had people over the years tell us they don't believe in it/don't believe he has it. Part of the reason is that previous generations have very little or no experience of Autism and even less understanding of it, so don't see it as any kind of reason for difficulties or behavioural issues.

The reality is that in our family people have fallen into two camps; those who perhaps never understood but took the time to learn and support and love DS1, and those who blithely announced "he makes eye contact he can't possibly be Autistic" and "what's his special skill, then?"

The difference between the two camps is, I think, intelligence and emotional iq; the brighter ones have learned along with us. The less intelligent ones don't feel the need. I appreciate that's a damning statement, but it's truthfully what I've seen.

x2boys
It's what i'm tempted to send both sets of Grandparents, neither of whom 'believe' in autism.
So, both their grandchildren, diagnosed by an NHS Psychiatrist led Team are just a little 'sullen' then :?

I would imagine there were a lot of children in the past that were labelled difficult or naughty etc when in reality today they would be diagnosed as autistic and given more support. My uncle is likely to be autistic but as he was born in the early 1950's he has never been diagnosed. My mum has worked with children with learning difficulties for years and she says that he shows many autistic traits. So he may never have got a diagnosis but it has greatly affected his life. He very rarely leaves his flat, the flat in which he moved into because his parents died, he lived with them until he was 58. He doesnt really talk to anyone even his 2 brothers. My dad says he massively struggled at school and he stopped going when he was 14. He has never had a job, my grandparents had a farm and he worked there until they sold it. After that he had no job. He is either in his flat or driving to the local wood where he goes for walks. That's his entire life. I think it's great that children now get support and help so that hopefully they can lead much more fulfilling lives than that.

You should don@StripeyChina but sometimes grandparents don't get it ds2 has severe autism and learning disabilities my mum still tells me he will.have a special talent because all people with autism do