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.

My FIL was disagnosed at age 60 with ASD, before that he was just a ‘naughty child’ or a ‘grumpy old man’ or ‘a chopsy lad who said what he saw and didn’t realised how rude he came across’ etc etc
He was just classed as a normal man, if he’d been born now he would have had an aSD diagnosis early on and may have had a different life.

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 took the medical professionals 38 years to gather enough evidence to diagnose me. I then had a social worker refuse to provide the support I was legally entitled to as in her 'professional opinion' I did not have autism, just low self esteem. The judge at the Court of Appeal told her quite clearly that she had neither the training nor the authority to second guess a formal diagnosis. Sounds like she's not the only one.

I'm a social worker and see many children pathologised with these disorders that are perfectly normal for their development and temperament.
To be diagnosed (not labelled) one of the key assessments is whether the symptoms I don't think thats the right word but my mind is blank "limit and impair every day function"

That's awful EwItsaHuman. Might be worth speaking to PALS. Have the school requested an Educational Psychologist assessment? won't help with dx, but as support is supposed to be needs based, EP may help with that.

Bollocks that's awful. Out of interest what support are you entitled to? I have ADHD and get sod all.

Thanks for the flowers haveyouseen. The asd diagnosis pathway can feel like a lonely place at times for parents. It is really helpful to communicate with others online that have an understanding of it.

NopeNi

What a fucking horrible thread.

Don't worry though OP, we're probably all just faking it for your attention.

Urgh. Not actually read the thread then, have you?

I have twin 6y old boys with low functioning autism. They were conceived through IVF, born at full term and met all of their physical milestones.

No one in my or their dad's families has autism and I don't remember having ever met children like them when I was growing up (still non-verbal, not fully potty-trained, one of them has frequent meltdowns... while looking physically normal), and I grew up in a country where disabled kids were not put in institutions but stayed with their parents.

Bollocks that's awful. Out of interest what support are you entitled to? I have ADHD and get sod all.

I'm not in the UK, I'm in Sweden Here there are various forms of support available. At the moment I get a regular 2 hours a week as that's all I can cope with. They help me with staying focused, so we may sit and go through paperwork or tidy up the garden, or sort out and clear clutter inside. On top of that they also come with me to things I feel I need support with, so some dr's appointments, taking something back to a shop, school social events. Stuff like that.

Just another thought. Dd10 has a very womanly figure. She dresses fashionably (copying the popular people and it gives her a certain amount of social acceptance). She copies their mannerisms, speech and interests. She hides her special interests (robots). She can have fairly ‘normal’ speech and interact well on a play date ( to the eye of someone who doesn’t understand). She can come home and lose her ability to speak, flap her hands and seem to instantly become all double jointed. She will screech repeatedly and become what I would describe as very typically autistic in her mannerisms. Dd7 is also becoming like this now and anyone who sees us at different times will think we have delightful NT children or two very autistic children with complex difficulties.

Our son fell apart the day after he started full time education, he was never a good sleeper but after his second full day of school he was in such a state that it was midnight before he went to sleep and 30 minutes later he began suffering night terrors, he had night terrors every night for more than 6 years and for 6 years the thing that the school was most concerned about was me making him sleep more, they put strategies into place then removed them a week or two later because they didn't work as if 5 - 10 days were long enough for him to become used to the strategies especially when those strategies were not even applied consistently

They wouldn't get an ed psych involved because he wasn't severe enough. At the end of year three they admitted that he needed a statement and when he got it halfway through year 4 that's when our problems really began.

They still wouldn't get an ed psych to formally assess him, they disregarded my repeated attempts to access EP support, they disregarded the joint OT & Physio reports choosing to make him write even though the reports recommended that they provide him alternative means of recording his work because he had severe hypermobility in all his joints, gross and fine motor skills difficulties etc etc.

When my DH then offered to provide the school a laptop with installed apps and programs to help him and the other Autistic child they refused. Real differentiation was non existent DS just had to do less work. Part way through year 5 DS stated that he wanted to be dead so that it would all stop.

At almost 16 he was finally diagnosed with 2 specific learning disabilities. Too late for GCSE's, he's barely coping with functional skills

anyone who sees us at different times will think we have delightful NT children or two very autistic children with complex difficulties.

I know that feeling.
My DS can, if you see him when he’s in the “right” sort of mood & setting, seem very normal, very articulate, very NT. And then at other times, when he’s struggling to cope, he’s full of tics and stims and his speech reverts towards baby talk.

So sometimes we get “but you can’t tell he has autism” and other times we get “what’s wrong with him?”

We were really fortunate not to have to jump through too many hoops or wait a long time for a diagnosis. Twin 1 had a big regression in March, was seen for assessment in August, had blood tests, saw SALT in December and was diagnosed the week before Christmas.

His twin was referred to SALT in September, referred for paeds assessment in November, had his SALT assessment in January and was diagnosed at his first paediatrician/OT assessment appointment a week ago. They already had a lot of information about him from portage and other people, and he’d already had a hearing test to rule that out.

I feel awful when I see how others are struggling to get a diagnosis - I don’t know why it was so quick for us but I suspect it’s because they’re young (27 months), they had clear regressions and because the impact is extremely obvious. I can’t imagine any children who are as affected as my twins making it to preschool without being assessed earlier. At the 27 month check, the scores were shocking in some areas so hopefully any child in that situation would be referred. I suppose if you refused HV visits and didn’t send your child to nursery, but I still think that children who are completely nonverbal and make no eye contact etc would be picked up earlier.

The thing about people with autism is that for the most part they mask behaviour, at worst appearing naughty to those with no in depth knowledge. However, when they get to their safe space, which is usually at home they relax and let their normal behaviour emerge from flapping, humming screeching and being upset easily to full on melt downs and self harming. Awareness and improving diagnostic techniques mean they are no longer labelled naughty, quirky or some of the rider terms used. The fight for improved facilities and assistance means it is in the media more too. So I don’t think there are more just that we no longer force those with ASD to conform we are getting better at adapting to them and others with hidden disabilities. Still a way to go though

SinkGirl sadly it does happen though. DS started having difficulties at 18 months and lost all his speech by age 2. I went to see the health visitors twice and both times was sent away with instructions to be firmer as he was just pushing boundaries. I was told I couldn't expect a 2 year old to be playing properly, he was too young - despite me trying to explain that he didn't engage with us and he wasn't even pushing cars along.
We enrolled him in preschool at 2 and a half as he seemed to be getting more and more delayed. His 2.5 year review came out with low scores in all areas and we finally started getting referrals but he wasn't diagnosed until after his third birthday. It seems my area won't diagnose before 3. I obviously don't know your twins and the difficulties they have, but I would say my DS has very obvious traits from just after 18months- non verbal, in nappies (he is nearly 4 now), no gesturing/pointing/signing, flapping, walking on tiptoes, little to no engagement, no eye contact, delayed developmentally, severe sensory issues and any play he does have is repetitive and restricted. He presents the same at preschool, children's groups and at home. It was such a battle for us to get support, let alone a diagnosis, that it makes me really feel for those parents whose child does have some speech, or presents differently at home etc as the battle must be even harder.

All this being said, my son is a big bundle of happy energy, and although it's always on his terms he is affectionate (despite certain people telling me that he's autistic and "shouldn't" be affectionate grrr) and funny and he makes me stop and see the world in a way I haven't before.

I’m so sorry that you had such a battle - it shouldn’t be that way at all, but I suppose in the grand scheme of things 3 is still quite an early diagnosis (especially if that’s the earliest they’ll diagnose there). It’s so frustrating when you know something is wrong and people aren’t listening - I encountered that with a HV so I self referred to portage and to SALT and got things moving. I’m sure things would have taken longer if those referrals weren’t already in place.

My boys are very affectionate to us - and can be to random people, which obviously isn’t a good thing! But otherwise your little one sounds much like mine - huge regression for one who stopped mimicking, playing, babbling etc pretty much overnight. His brother is incredibly smart in some areas but had even less interest in people and no speech at all. In the last month he’s really started making eye contact and seems much more sociable at home - we are making progress but it’s painfully slow.

I do believe it’s befsuse it’s more widely recognised now. I am 27 and have a son with asd and a daughter who is also being assessed and I do believe I am on the spectrum myself. Looking back even in the 90’s there wasn’t many children that were officially diagnosed asd in my school but probably were but were seen as ‘slow’ ‘backwards’ or ‘quirky’. I believe there was at least 2 in my class (not including me).

SinkGirl yes, I definitely consider it an early diagnosis even if it still took 18 months to get there. I only found out a few months after his diagnosis that they don't diagnose until 3 here. Have never been told that officially but anyone that saw a paediatrician before 3 seemed to be told "yes, probably autism, but come back when they are 3".
The hard part for my son as well as us was the first year or so before we knew what was going on or how to help.
I appreciate it's harder to diagnose at an earlier age, but wish there was more support for people during the early years.

anyone who sees us at different times will think we have delightful NT children or two very autistic children with complex difficulties.

Yes!

I’ll never forget the first “head tilt” DS got, you know that look people give your child when they realise they are not like other kids. It was in the queue at Wilko and he was touching lots of packets of sweets in a particular order. He was 8. It was a relief in one way as at least the woman didn’t think he was being naughty. But also the look of sympathy is burned into my brain forever.

Often people are surprised when I mention DS is autistic. But the real shock comes when I say And so is his sister. Without fail it turns from a mild interest and “oh really?” to outright disbelief that DD could possibly have autism too. And that’s when the “oh well everyone is on the spectrum somewhere” comes out.

Because she holds it all in better. Even though they are actually at the same “level” of impairment, according to their assessment scores.

Both kids were diagnosed officially on the same day (we’d had her ADOS the week before but run out of time for feedback) - I didn’t really react to DS’ diagnosis, but I cried at DD’s because I was in shock that someone else could see what we did.

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.

You have a child who's being assessed? It can seem that way at that stage. YABU but you'll get over it.

Where were/are they [institutions] and are they now empty? I know there were some..but surely not enough to cope with the numbers of people being diagnosed these days.

They are mostly closed. Replaced by inclusion in mainstream for the more able, and special schools plus care in the community for the rest. And home ed or exclusion for those who are able but not adequately supported in mainstream. And an ASC diagnosis doesn't in itself tell you whether someone will eventually live independently or not.

Not directly to do with ASC, but I heard a woman interviewed on R4 who had been educated at a special school and recently returned for a visit. She was impressed by the school and the commitment of the teachers etc. She also commented on how much more severe and complex the disabilities were for most of the children than when she attended. She was there with girls who were in the school because of conditions like asthma, girls who would be in mainstream now. And I guess that many of the girls who are there now would not have been formally educated at all 40 years ago.

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

But an ASC is a developmental and temperamental condition. Your own DD is perfectly normal for her own development and temperament. Which you have labelled - without a formal diagnosis - as "evidently ASD". Are you afraid that a diagnosis will pathologise her? Or do you imagine that because other children have ASCs that are not immediately evident to you, that they have therefore been mislabelled?

Just for one example, communications issues that lead to bad behaviour can be very non-obvious.

Obviously severe symptoms are problematic and need specialist support but I'm concerned we label behaviours a bit too freely.

Does your DD just have behaviours? Doesn't she need specialist support?

But what about more obvious behaviours, and severe autism? Hand flapping, tics, severe anxiety, lack of speech, inability to make eye contact, still in nappies at secondary school age etc. Surely if kids had these issues back then it would have been obvious.

Children with severe difficulties didn't attend main-stream schools in the 70s/80s/90s. Read this from 2004:

www.telegraph.co.uk/news/uknews/1459507/Closure-of-special-schools-harms-all-pupils.html

You still now beyond primary age probably won't see many of the children with autism and severe learning difficulties. They will attend different schools, frequently won't attend mainstream activities and only be out when there are few people about. They are still largely invisible.

They are still largely invisible.

We manage activities for the DC to take into account DS' needs. When it's roasting hot and sunny, we go to softplay or the trampoline park as it'll be quiet. When it's tipping down with rain, we go to the NT or the petting farm as that'll be quiet.

Lots of places now run autism-friendly sessions and events - softplay, the trampoline park, the climbing centre, the cinema, the shops - which on the one hand is great but on the other hand brings with it a certain element of being reminded to stay in your lane. If you dare mention anything negative about the standard session or if your child behaves in a way outside of the norm then you reminded by both the venue and bystanders that there are special sessions available for autistic people and that one of those will be more suited to your needs, the implication being that you should stick to these.