To ask if your child or children have ASD

[Mumzoo]

Just something I notice on every thread on mumsnet, people mention their "child with ASD". It seems so utterly common on here that it makes me wonder if there are any families out there who still have no children with ASD at all. I have one with (not yet diagnosed but quite evident) ASD and one neurotypical. Growing up I didn't know any children with ASD until a boy joined our secondary school and we were all made aware of this by our teachers in a bid to accept him despite his "odd behaviour". That was one child in a school of 1200 pupils. Now there are one or two in every class. It's quite shocking.

I'm concerned we label behaviours a bit too freely

you know that the labelling process takes YEARS!

Do you also consider e.g. diabetes a label? Probably not. So why do you see an ASD dx as a label as opposed to a medical diagnosis. Genuinely intrigued.

My DS is 4 and ADHD has been mentioned but IMO he is just a typical, energetic boy that plays vigorously and gets bored easily.

So who is suggesting your son may have ADHD? Family?childcare/school? Randomers in the street?

I'm a social worker and see many children pathologised with these disorders that are perfectly normal for their development and temperament. Obviously severe symptoms are problematic and need specialist support but I'm concerned we label behaviours a bit too freely.

It's interesting you are able to assess children to a better standard than the clinician who gave a diagnosis. Perhaps you could offer your services. I'm sure they would be delighted to have you on board.

Ds was 3 when issues where first raised. He was a few days short of 7 when he was diagnosed with autism and I was told he was young to receive a diagnosis especially as he had other comorbid issues which if it wasn’t so clear cut would have delayed it further.

He was nearly 9 before he was diagnosed with adhd and that was only because I paid privately for part of the testing to get the ball rolling!

NotMyUsualTopBilling

If you'd have asked that in your OP and explained yourself in your follow up posts I'm sure people would have agreed with you but that's not how it reads at all.

In my head I can see Oprah handing out a diagnosis to all the kids in her audience!
"You get a label, you get a label too, everybody gets a label"!

:) :)

My two year old twins have both been diagnosed in the last couple of months. It’s been so incredibly obvious that there’s been some kind of issue for at least the last year for one of them, and about eight months for the other.

It has nothing to do with bad behaviour - they are extremely well behaved, they just can’t speak, have no understanding of language or interest in people and are constantly sensory seeking.

sometimes the whole "we're au-some" rhetoric goes too far and minimises the difficulties of living with autism

Right? When my boys were regressing and I had no idea what was happening, I got a proper kicking from one group for daring to suggest that I didn’t want my sons to have ASD. They’re diagnosed now and I still wish they didn’t - they can’t talk, can’t communicate, one has pica... I worry so much about their future. One is incredibly smart but I don’t care whether my children are incredibly smart - I just want them to be able to function.

I think, through my observations working in a school, that it's probably closer to 25% of children that are autistic. It's just that most of them go unassessed and undiagnosed for a multitude of reasons. I think we need to radically rethink our approach given that high number but I can't see it happening because only children with a diagnosis count so we're stuck with this 1% BS.

I suspect that a) people with autistic children are more likely to seek support online (whether they know the issues they have are autism-related or not) and b) the population of MN is more likely to be aware of what autism looks like and therefore to seek and get a diagnosis.

I'm a social worker and see many children pathologised with these disorders that are perfectly normal for their development and temperament.

Just what the world needs, another social worker who thinks they're an expert in autism and developmental disorders, and thinks they know better than professionals who are qualified to assess such things. If a child doesn't meet the diagnostic criteria for autism then they won't get a diagnosis, simple as that.
And why is getting a diagnosis such a bad thing? If they do need support later on in life and they already have the diagnosis their parents will have the advantage of not having to start the diagnostic process from scratch with a teenager, trying to race the clock to get it done before their GCSEs or starting college or whatever.
Funny how people don't suggest leaving kids with visible disabilities to struggle and flounder before seeking appropriate diagnosis and support for them.
Oh, and correctly identifying an autistic child's needs is not "pathlogising them." Do you think diagnosing a child as being deaf/ having cerebral palsy/being visually impaired is "pathologising them?

You can always play autism bingo with autism threads on mumsnet. It's a guarantee you''ll have someone to pop up and say "there weren't all these autistic kids in my day, we label kids too easy these days, high functioning autistic people aren't disabled, they're just quirky, don't call it ASD because it's not a disorder...."

As for the thread itself, yeah I can see why people are bit at what the OP is getting at. Not least because of their exteremely ignorant questions on page 1 about severely autistic kids being put into institutions and their seeming faux ignorance of the matter.
I guess I'm just surprised that a person who says they have a child awaiting assessment for ASD seems to know so little about it. Their reasons for starting the thread keep changing too, they can't seem to make up their mind whether or not there's more kids with autism than are officially counted or whether or not (as some of their posts have none too subtly implied) lots of parents on here are lying about their kids being autistic.

OP, on the off chance you're genuine and you really are curious about knowing more about autism, the history of how it was diagnosed and assessed, and how the autistic population was/and is counted then the book Neurotribes is a good starting point. Also worth reading is the book Isabel's World for more detailed information about autism from a statistical point of view.

I'm with you, Sink.

Thank you for your very sensible post @JanMeyer
It summarised a lot of what I was going to say myself, so has saved me a lot of typing!

JanMeyer I assure you I am 100% genuine! I never claimed my initial post was about funding and not once have I implied that anyone is lying about their kids being autistic! I mentioned funding as that is the reason why we are struggling to get a diagnosis ourselves. Isn't that how these threads work?! Or can I only ask one question or make one comment on the topic?

My son most likely does. Being assessed.

I have ADHD and was told at diagnosis I'm very likely autistic too.

KoalasAteMyHomework - hah, that's a fantastic name, . And I'm happy my post saved you some typing. That's like the fifth draft of my post by the way, had to cut out some of the more angry ranting, and the angry spelling mistakes.
Anyway, glad you found it useful. Though I'm finding it strange being called sensible on here, normally I'm the "angry, ranting borderline aggressive autistic."

Mumzoo - Of course people can ask more than one question on a thread, but your first post isn't really clear about what you want to know. And I can totally understand why you've angered quite a few people on this thread.

It seems so utterly common on here that it makes me wonder if there are any families out there who still have no children with ASD at all.

Are you honestly telling me you can't see why people would see that as a goady question?
And people are even more inclined to question your motives when after explaining why parents of autistic children might be over-represented on mumsnet you seemed to brush those explanations aside.
You make completely unsubstantiated claims like "there are one or two in every class" and still can't see what people have a problem with?
Oh and I have to point out just because that boy was the only one you were told was autistic, doesn't mean he was the only one, does it? Because most parents would hardly accept having their child's diagnosis told to all their classmates in some misguided attempt for acceptance/understanding. Chances are there were a few more you had no idea about.
People have such a strange attitude to autism on here, the whole "I never met/knew an autistic person when I was a kid" And so what? So just because you didn't know one they don't exist? I've never met a Danish person either, I'm pretty sure they do exist though.

Given that there was no real question in your first post, the strange nature of your subsequent post and the fact you referred to the rising numbers of autistic children as "shocking" without explaning why, I think questioning your motives is pretty fair to be honest. I don't know how much you post on mumsnet, but if you post on here a lot then you should know that goady posts/threads about autism aren't exactly rare, so you can't blame people for having a certain amount of skepticism.

Agree with everything @JanMeyer said too. Was going to suggest Neurotribes. Now going to google for Isabel's World as not read that one.

You can always play autism bingo with autism threads on mumsnet. It's a guarantee you''ll have someone to pop up and say "there weren't all these autistic kids in my day, we label kids too easy these days, high functioning autistic people aren't disabled, they're just quirky, don't call it ASD because it's not a disorder...."

Yes this. I hate the whole “high functioning” thing. It’s incredibly hard living in a neurotypical world when my brain is anything but. Just because most people don’t struggle to understand me doesn’t mean I’m not struggling myself.

I am high functioning but trying to actually cope is exhausting and I fail often. If it weren’t for DH I don’t actually know what I’d do. But yeah, I’m just quirky

I love the they're just quirky line. I get in regarding ADHD oh you don't have ADHD you're just quirky and forgetful.

The devastating impact it had on my life that has been massively improved by meds is not quirky.

I’ve already had people tell me that I shouldn’t “let them label” my children at such a young age, or that they are amazed they can tell at such a young age.

These people don’t understand the pain I felt taking my boys into baby / toddler groups and seeing a room full of children that didn’t act anything like my children - these other kids who’ve never met me were staring at me, wanting attention, wanting interaction. My boys didn’t show any signs of realising I was a person until a few months ago.

They don’t understand what it’s like seeing my friends’ twins forming amazing bonds, saying each other’s names, playing together while mine don’t interact at all. I take them to nursery and a couple of other kids cry when I leave - mine don’t notice I’m gone, for five hours at a time.

Doctors haven’t made my sons autistic by diagnosing them - they ARE autistic and at least now I know and I can do my best to help them. Consultants, occupational therapists, speech therapists and portage are all working to help my boys because of this. If a miracle happened and one day they wake up and start talking and acting like NT children and have no signs of ASD then we have lost nothing. If the label is wrong, they’ll have had all the intervention I can arrange to help them.

Please don’t tell me that diagnosing them is pathologising normal behaviour - their behaviour is not “normal”, or rather typical. Typical children don’t have a massive regression where they stop copying and babbling and playing with toys literally overnight.

My boys have been diagnosed very easily because it’s so patently obvious what’s going on with them. The later it gets, the harder it is. Their lives will be easier because of this early diagnosis and I’m so relieved we’ve been able to sort it now.

SinkGirl I've had the same comments.

My boy has different symptoms. Mine is like a coiled spring.

People who say this crap don't have to deal with being unable to go out with all your kids on your own because you know one of them has no sense of danger and will happily run off ahead straight into a road.

Or that he has no sense of stranger danger and will just walk up to anyone and everyone and would easily walk off with someone should they wish to.

Or that if I have to suddenly change what I'm doing and there's no warning he will have a meltdown that involves aggression like biting hitting and smacking.

Or that we can't ever have a quiet day in because within two hours he will be scaling the furniture and literally climbing the walls.

My son's issues are mainly around him having zero sense of danger and no understanding of contexts. It means I have to carefully plan outings and any outings that involve more than just me and him I need another adult with me because if he runs off I need someone who can either catch him or watch my younger kids while I run after him.

But yeah all toddlers are energetic.

It took us 21 months (from referral) to get a diagnosis for DS that was 12 years ago, now it's less than a year, there was also a13 month waiting list for OT and PT, now the waiting list is under 12weeks.
last year our eldest got a diagnosis of autism after a 12month wait.

When I was a child the children who were diagnosed with Autism were sent to special schools as were the children with Down Syndrome, Cerebral Palsey etc as well as those with other physical disabilities, the children with severe learning disabilities were classed as uneducable and didn't go to school they went to day centres a couple of days a week.

Asperger's Syndrome wasn't used as a diagnosis before the mid eighties and only became a more widespread diagnosis in the nineties, it is now falling out of use because the DSM V no longer lists it as a separate diagnosis, it is now diagnosed as Autism.

Someone upthread (sorry for not naming the pp) wrote a label is something that you put on a suitcase, I totally agree and have used that same sentence (under different names) since I joined Mumsnet about 6 years ago. I'm sure that I have also stated that you find labels on jam jars, tin cans and bottles, I've definitely stated that no other medical condition is referred to as a label, a person with Autism has a diagnosis not a label.

As for institutions there were many different types, most people didn't need to know about them, where they were, what they were for etc so would have had no idea what was available with the exception of the local 'mental hospital'

The earliest medical reference to Autistic Behaviour I have seen was dated 1913 However Autism has undoubtedly been around long before then.

It’s so hard, especially with two with ASD. Took one for an appointment the other day and a woman in the waiting room was on her phone so he climbed into her lap before I could get across the waiting room. They never ever stop, no sense of danger at all, will fall off a table and smack their head and then get straight back up on the table. I’m absolutely shattered and ruined. Who would want this? I love them with all my heart but I would take it away in a heartbeat if I could, for their sake more than mine.

We are fortunate we have no aggression yet, and no obsession with routine but it’s early days so who knows what’s ahead.

IME there are not enough social workers with enough knowledge and understanding of Autism spectrum disorders.

Wow JanMeyer

You make completely unsubstantiated claims like "there are one or two in every class" and still can't see what people have a problem with?

I gave a link to the study that found that 3.5% of 11 year olds (from a huge UK-based cohort study) had been diagnosed with autism. Given that most classes have around 30 kids there must be 1 or 2 (on average) kids with autism per class...plus all the kids yet to be diagnosed.
I did the maths. It wasn't just plucked from nowhere!

Yeah, I feel exactly the same way about the whole high functioning thing. I always tell professionals and people in general never to use those words in relation to me, because it puts a huge amount of pressure on me (and of course perpuates the stereotype in general) to be that stereotypical quirky autistic. People think they're helping when they tell me that I write really well or that I'm very articulate. But I'm still fucking useless in real life, and that's all that counts.

It irks me that people who use the term "high functioning" don't even know what it actually refers to, that technically all it means is that the person in question has an IQ over 70 and had no significant speech delay. It says nothing about how badly a person's autism affects them. Yet just this week I saw on another thread a poster write words to the effect that "high functioning means they can understand and behave like an NT"
The autism itself is disabling enough all on it's own, but what's even more disabling is the shocking number of people who refuse to believe you are disabled because you don't "look disabled", or question your needs because their tiny little brain can't process the fact that a person can be perfectly intelligent yet struggle with simple everyday tasks. Their helpful solution? "Just try harder." Gee, because I'd never thought of that. I burnt out just trying to keep up with "normal life" and right now I feel like a husk of my former self, but yeah, we're quirky and just need to make more effort.

The earliest medical reference to Autistic Behaviour I have seen was dated 1913. However Autism has undoubtedly been around long before then

Yeah, it has been mentioned way before then, but obviously wasn't called autism or anything like that, and has been recorded in history. Are you familiar with Peter the wild boy and Kasper Hauser? Both are such clear cut cases of classical autism. I wrote a whole presenation about the subject - it's kind of my obsession actually. And I think that's my cue to shut up before I talk too much

Here it is again JanMeyer as you seem to have missed it:
www.academia.edu/8965250/Millennium_Child_with_Autism_Millennium_Cohort_Study_Early_childhood_trajectories_for_health_education_and_economic_wellbeing