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.

It's know as ASD in our house. My son is autistic, PDA, and it is a disability for him. He can't access the education system properly because teachers see his anxiety as naughtiness. He is disabled but doesn't look it.

Autism runs in our family, if I was a kid now (60's born) then I would undoubtedly be diagnosed as would my father.

My 15 year old son was recently diagnosed with HF ASD. He's one of several in his year at a mainstream high school. When I went to a similar school in the 80s there were none. I'm certain that if he was at school then he would never have been diagnosed and would have been just been considered "a bit odd" or "a loner". Actually, looking back to my school days, I can think of several kids who fitted that description and realise they could well have been on the autistic spectrum!

I've just done a rough count up of friends and acquaintances and can name 10 families who have at least one child with ASD (most of them high functioning). Most of these people I knew anyway, not because we have ASD in common. I've recently joined a support group so am meeting loads more, it's amazing how many people are in our position.

In answer to your question, ASD has always been around but there's so much more awareness today, particulary with regard to HF ASD.

Aspergers here (me!).

People count those with traits of autism as being on the spectrum. Some people have mild sensory issues whilst for others it's a pronounced inability to interact.

Sometimes I don't see the point of labelling for the sake of it unless it benefits a child who would suffer without assistance. Girls mask it more than boys and it's tricky to tell whether a child is autistic or just shows traits which may be something or nothing. I'm very protective over my two and tend to overreact or project on them sometimes, maybe to compromise for myself living with it undiagnosed for 26 years (now that is hard).

@Didyeeaye - Obviously severe symptoms are problematic and need specialist support but I'm concerned we label label behaviours a bit too freely what exactly do you regard as severe symptoms? I have a feeling that you are the same type of social worker who NFA'd our LEAs request for support which meant that my seemingly high functioning (IQ above 70, no speech delay) son was left floundering in mainstream education which we were told was the best placement for him, with inadequate support from staff with little or no knowledge and understanding, where he was placed in internal exclusion for months, where he was taught by a TA with no previous experience of Autism, being discriminated against, illegally excluded and victimised until he was finally permanently excluded. No school within a 35 mile radius would take him, all citing that they couldn't meet his needs, he eventually ended up in a specialist independent school with a pupil to staff ratio of 5-2 for SEVEN years, he has just returned to mainstream education where he has 1-1 support in every lesson. He is old enough to drink, drive, get a job etc but who will employ him when he requires 1-1 support. All this because of numerous people deciding for themselves that DS wasn't severe enough, not one of those people involved were qualified to make that judgement call.

*I'm a social worker and see many children pathologised with these disorders that are perfectly normal for their development and temperament. What exactly are your Qualifications in regard to diagnosing ASD?

And people wonder why parents of children who have ASD are very vocal on these types of threads!

Sorry about the bold failure.

Sometimes I don't see the point of labelling for the sake of it unless it benefits a child who would suffer without assistance.

It always benefits. Growing up feeling like a broken person, like some sort of alien walking among people, interacting as if a thick pain of glass separates you from the others and feeling out of place.

We always know. Knowing it has a name is helpful and provides inner peace and awareness.

I have a daughter (4) who has just been diagnosed with ASD, which is moderate in degree (she has language skills but is notably developmentally behind her peers in many areas).

I also have an uncle and a grandad who I believe would have been placed on the ASD spectrum had they grown up in an era when higher functioning ASD was better understood. As it was they were just viewed as a bit 'odd' and never received any support. I suspect the numbers of people on the ASD spectrum haven't really changed much - we're just better at diagnosing and supporting people now.

People count those with traits of autism as being on the spectrum.
I hate to be the picky pedantic one here but no, people with "traits of autism" are not counted as being on the spectrum. People who have a diagnosis of autism, that is those who meet the triad of impairments - are counted as being on the autism spectrum.

Sometimes I don't see the point of labelling for the sake of it unless it benefits a child who would suffer without assistance

It's not always that simple though, just because a child needs no assistance or support at one point in their life, doesn't mean they won't need help in the future. I wasn't diagnosed as a child, my parents were aware there were issues, but they followed the advice given to them by professionals. The end result was falling apart spectacularly whilst doing my A-levels, only getting a diagnosis after that and then me refusing to have anything to do with the outside world for quite some time. Oh, and it goes without saying I have an almost paranoid distrust of professionals now, which makes engaging with the limited services that are available quite tricky.

And it's not always about "needing assistance" either. Sometimes other people being aware that you have autism is enough. And unless you have that diagnosis, well that understanding simply isn't going to be there. For example people think I'm rude and not interested in others. Neither of those things are true, it's just my lack of eye contact and somewhat neutral sounding voice makes people think that way. Now other people know that's because of my autism, and I no longer get told off by people I know for being rude. It would be nice if that tolerance was there without the diagnosis, but realistically I know that's not the case.

My eldest son (19) has ASD and is in residential care due to the complications of ASD and a serious mental health problem. My husband (with whom I do not live) has ASD (both husband and son are diagnosed). My youngest son (17) was referred for assessment, but chose not to go. I also work with individuals who have ASD

The fact that I have lived and worked with individuals with autism means that I am likely to post on threads where autism is a topic or sub-topic. Mumsnet is a very large forum and there will be many people who live with, work with or are individuals with autism amongst the potential posters.

I'm hoping that for our son a diagnosis will be helpful. At the moment we are going through the asd diagnosis pathway with a 14 year old and it is really hard. I feel terribly guilty that we did not pursue it earlier when he was at primary school.

Sometimes I don't see the point of labelling for the sake of it unless it benefits a child who would suffer without assistance

See page 6 on this thread re using the term "labelling"

To be clear, if someone qualifies for a medical diagnosis of autism, they have to meet the following criteria :-
"The characteristics of autism vary from one person to another, but 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 since early childhood, to the extent that these "limit and impair everyday functioning".

It's a medical diagnosis, not something some random pulls out of thin air and sticks on your child in some random way because in their unqualified opinion he appears to be autistic.

@JanMeyer agree with your last post.

re your Autism Bingo upthread, we only need the 'everybody is on the spectrum somewhere' shite to have a full house

Blanktimes - Hah, yes, that old chestnut, you're right that hasn't popped up on this thread. Then we would have a full house

Punxsutawney please don't beat yourself up, you weren't to know how long the process takes, no-one outside the system does.
Please try and focus on what's important now and that's getting an assessment that shows what needs are there and how school have to meet them.

No-one outside the system has a clue how difficult and time-consuming it is to actually get a diagnosis, they are also clueless about any help it can bring and about the necessity for different styles of parenting and teaching.

Many hinder the process with their negative attitudes, telling you all kids do that, not "seeing" autistic behaviour for what it is and then some, to the point where you feel as though you're being gaslighted by everybody.

I've never known any other condition that has so much absurd conjecture and disdain about it that random people actually believe is true and they trot it out at every given opportunity.
Almost every thread on MN about autism shows the same level of tripe, even the SN boards aren't immune.

BlankTimes shush, you'll be giving people ideas then we'll have more people pathologising behaviours.

I have recently found out I have PCOS. It’s mild in the grand scheme of things, I have been lucky that it never affected my fertility.

Is that a pointless label? Or is it a valid diagnosis because I meet the threshold and can find it useful to know why I suffer particular symptoms?

My VERY 'normal' appearing high achieving 7 year old twins have spent the morning crying, shouting at me and really struggling with such complex problems as a sock not feeling right. The sandwich not being symmetrical. Losing a Lego piece. Because they have spent all week trying to be 'perfect' at school as they are so rule bound that deviation is just not an option, not really understanding the playground rules but desperately needing to fit in. So if their label means that I understand just a little bit more and remake the sandwich, find the Lego piece and let them cry and help them understand their world and dont expect them to be 7 because emotionally they are 3 then that's fine by me. It doesn't make it any easier for them or for me. It's been horrible for all of us all morning but no one feels they have been bad (them) or failed (me). I don't really care if any one else thinks they aren't really autistic. They don't live with us they don't see how hard every tiny challenge can be every single day.

sometimes I don't see the point of labelling for the sake of it unless it benefits a child who would suffer without assistance how do you know that a child who doesn't need assistance at the time of diagnosis will not require extra support at a later stage of their lives? Should everyone who seeks a diagnosis wait until their child cannot cope? bearing in mind that a common point of failure to cope is at secondary transition, then they have to wait a year or two before seeing Paeds or Camhs (depending on who does the assessment in their area) add on the length of time it actually takes to diagnose and before they know it GCSE's are fast approaching and they might still have to apply for a needs assessment. We all know that support jobs are being cut to the bone.

Should everyone who seeks a diagnosis wait until their child cannot cope? bearing in mind that a common point of failure to cope is at secondary transition, then they have to wait a year or two before seeing Paeds or Camhs

I think maybe the reason people say you should put off getting a child is assessed because they buy into the myth that you can just walk into the GP's office, get a referral and get a diagnosis just a few weeks later. People seem to be unaware of the reality, that in real life waiting lists are absurdly long, and that the wait times are made even longer by a) doctors/schools and other professionals playing pinball with the child, that is each of them denying they can make the necessary referral or help - leading to the parents being sent back and forth between the relevant professionals.
And b) the process is made all the harder by professionals who deny and obsfucate, saying ironically (as the self proclaimed social worker on this thread did) that there's no point in getting a diagnosis unless they are "really severe."

As Blanktimes said earlier, people have very strange ideas about autism. And it comes from people who actually have no idea whatsover about the process or autism at all really. What I don't understand is why people react this way to autism, or why it makes any difference to them who has a diagnosis and who doesn't. People act like getting an autism diagnosis is like the end of the world.

I've seen it in real life too, when my brother was younger he was originally diagnosed with global developmental delay, something no teacher/professional disagreed with or made comments about. But when he was older the diagnosis was changed to autism. Then and only then did people start making comments like "are you sure he's autistic, I mean he's really sociable/nice/friendly."

Aside from how offensive that is (implying autistic people can't be friendly and nice) it's also really bizarre. So they trusted the paed to get the previous diagnosis right, but somehow decided they were qualified to question this one.

Haveyouseen you are spot on. Our son seemed to cope at primary even though we saw all the signs of asd. Secondary school has been a different story. Here we are in year 10 with no idea of where he is on the waiting list for a speech and language assessment. There are also issues with his fine motor skills and he is feels he has problems with his memory too.

I actually work at his old primary school and some of the staff have admitted they knew that there were issues. I think because he was quiet and complient and meeting the academic levels it was easier just to ignore his problems.

We are just over a year away from gcses and I never imagined we would be where we are now. I know that us not looking into a diagnosis earlier has definitely made life more difficult for him. We are trying our best now to be as proactive as possible and slowly with much pushing from us his school seem to be starting to put support into place.

One with asd, one being assessed. One with a physical disability, one with learning difficulties and one who is nt. I think there are the same amount of people with asd around but they aren't hidden anymore.

@JanMeyer oh yes the myth that it only takes a few weeks for a diagnosis, it comes a close second to the myth that schools will provide the child with all the support they need.

@Punxsutawney sorry to hear you are going through all this now

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.

Doctors don’t hand out diagnosises like sweeties. A child has to meet the criteria to be diagnosed with ASD, and the diagnosis takes time. It’s not something that should be dismissed by someone with no training or expertise in ASD diagnosis.

It took something like 15 months from referral for my DS to be diagnosed with ASD, and from what I know of other people’s experiences, that’s quite a fast diagnosis.

wait times are made even longer by a) doctors/schools and other professionals playing pinball with the child, that is each of them denying they can make the necessary referral or help - leading to the parents being sent back and forth between the relevant professionals.

This is where we are with DC2 right now. School nursing team referred him to paediatrics after school raised possibility of ASD. Paediatrics bumped the referral back to the SENCO and said it should be managed in school using established ASD support policies. School suddenly backtracked, said they had zero concerns regarding ASD, and referred him back to school nursing team for "behavioural issues predominantly displayed at home only". Nursing team referred him back to paediatrics. Paediatrics saw him (hurrah!) but said they can no longer diagnose so referred him to CYPS/CAMHS. CYPS bumped the referral back to the school nursing team as they're not taking new referrals at present. School nursing team sent it back to school, telling them to provide ASD support. School re-referred to school nursing team. School nursing team rejected it and said they'd refer him to someone who can help but haven't said who or how long it will take.

So now where the fuck do we go?

Meanwhile we're in limbo with a child who needs various interventions but we can't get access to those interventions without the so-called "label".

But yeah, they're soooooooooo quick to diagnose these days

The thing is on a forum such as mumsnet people with children that have ASD are going to be drawn to posts about it or simulate behaviours etc etc
I have 3 kids, one with ASD, I often post on threads and refer to my child without ASD to give advice/ask for advice/illustrate a point
In real life he is the only child in all 3 of my children’s classes who has ASD and I only know a couple of people with children with ASD.