Children not formally diagnosed with ASD

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This is something I am very interested in. Reading various threads on mumsnet I get the feeling that there are a lot of children who are not formally diagnosed with ASD, but where parents feel pretty sure that the child has Asperger/very high functioning ASD.

I am pretty sure this applies to my DD who is now in secondary school. There have never been any issues at school and no one ever raised any concerns, so nothing to trigger a diagnosis. It’s only over time and educating myself that I have concluded that she must have ASD but at some very high end of the spectrum. I think she herself feels different to other people at times but does not want to be labelled.

Can anyone relate to this?

Yes, me and my eldest son. Both typically would fall under the “Aspergers” umbrella if we went to diagnosis, however no real need to-in both our cases other than some social awkwardness we experience no negative effects if that makes sense? (As in we do experience other things associated with aspergers but not negatively).
Two youngest DS’s on the other hand-one formally diagnosed and one going through the formal diagnosis pathway at the moment-they both require additional help so it’s in their best interests.

This was my niece who did get a diagnosis when she was 16. Her presentation is very different from her autistic male relatives.

Yes, she is a bit socially awkward, a bit “quirky”, and suffers from anxiety, although that seems ok at the moment.

I know two, who I suspect are on the spectrum. They're just what I would call a little bit unusual.

They are both in really good technical jobs, both men, but they are completely inept at social conversation. They're fine when talking about their job, but try to make small talk and you just have to smile and nod at the inappropriateness of what they come out with.
One is an uncle (married into my family). When introducing my boyfriend many years ago, he just spoke on and on and on about the dog for about an hour at the dinner table and laughing away to himself.

The other is a colleague. He randomly tells us all about his sperm donations.

They both seem high functioning, in pretty good jobs. I know my colleague isn't through his probation yet as it requires him being able to interact with clients and other professionals, but my uncle is pretty senior in his role. He randomly builds things himself too, so like metal detectors, two way radios, rebuilds engines in cars, that sort of stuff.

They both seem to be functioning in society, but I would guess that they are both on the spectrum.

I did well at school (academically at least) and went on to have a decent job and a family. I didn't get diagnosed until last month. I'm in my early 50s but have still found it useful.

I can understand your dd not wanting to be labelled but she might find it helpful in the future (eg to access support at uni if she needs it or to ask an employer to make reasonable adjustments) and it would be up to her whether to disclose a dx to anyone.

Cariadlet - I agree - and maybe she will in the future - but I think at the moment she just wants to be “herself” and is resistant to being “diagnosed” with anything or being treated as different.

but at some very high end of the spectrum

There's absolutely no such thing. The spectrum is not a linear scale.
the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

It is possible to have some characteristics of autism yet not meet the criteria for diagnosis.

From the NAS www.autism.org.uk/
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 (this includes sensory behaviour), since early childhood, to the extent that these 'limit and impair everyday functioning

This is the crucial part that makes the difference whether someone is diagnosed or not "to the extent that these 'limit and impair everyday functioning"

Without that you will not meet the criteria for diagnosis. You may have traits, but you do not have autism.

Autism is not a label, it's diagnosis carried out by medical professionals.

This may be of interest, a discussion on autism presentation in women and girls.
www.mumsnet.com/Talk/guest_posts/3549294-Guest-Post-Why-have-we-overlooked-autism-in-women-and-girls?msgid=86175821

Most people exhibit some autistic features, but identifying a person as autistic is completely inappropriate unless the behaviours significantly impacts on the persons ability to function. If your child is doing well at school and can function in the same way as her peer group then that identification would be completely inappropriate. Being autistic is intrinsic to our very nature, it can be isolating and draining and wonderful and gives us a unique world view. As someone who struggles daily to survive in a world not built for me raising a child who also struggles I am infuriated by how trendy it has become to "self diagnose" autism.

I get the feeling that there are a lot of children who are not formally diagnosed with ASD, but where parents feel pretty sure that the child has Asperger/very high functioning ASD.

That doesn't make them autistic though. What parents think and the true diagnosis (or lack of) are often very different things. It takes a team of specialists to diagnose autism, not a parent who recognised some behaviours they have read about on the internet.

Having a diagnosis doesn't mean anyone will treat her differently, nobody needs to know, unless she chooses to tell them. It's often quite good to be able to say 'actually I can't/don't want to do that because of my autism.

My eldest was at boarding school from 10 (specialist reasons, her choice). I'd suspected ASD age 9 and been told no by a screening test done alongside EdPsych work. I then had a very useful discussion with her housemistress when she was 12/13, and she was diagnosed rather promptly after changing schools, age 14. A key part of the discussion with housemistress and counsellor at 2nd school, was that an actual diagnosis would be helpful to her at that point in time. Giving her a reason to feel it was ok to say, no I need to be alone for a bit, for example. Her response when I'd first mentioned ASD to her was to go away and read stuff and she'd found that interesting and helpful. I don't know how much she has mentioned at school; anxiety is still the biggest part of the picture.

Her younger brother was seen by CAMHS at about 10, and they suggested he "had autistic traits" but it was entirely up to us whether we pursued formal diagnosis. He matured a lot over the following 12-18 months, and age 13 has ended up also in boarding school, but in a context where I'm sure his housemaster has multiple ASD boys and they can all pursue specialist interests to their hearts content. He doesn't remotely need anything from a yes/no to ASD. Sometimes his interpretation of stuff drives me crazy, but that may be normal teen lack of awareness or ASD!

My eldest initially found adapting to senior school really difficult, the youngest has slotted in like a fish to water, despite it being his first boarding experience. I don't know whether ASD is actually part of him or not, and don't need to know. If it is then he is supremely lucky to be in a place where he will be able to learn more social skills without marked out as unusual. I wish there had been a similar school for his sister - but put a bunch of bright girls together and you create a different environment compared to putting bright boys together. (She is at a co-ed school)

What do people even mean when they say "very high functioning ASD/on the high end of the spectrum?" Is it code for "not learning disabled?" (Its offensive if it is). Or is it shorthand for "looks normal, isn't very affected/disabled by it, will be able to go to university and hold down a job?"
Because if so, guess what, that's offensive too. For one thing some people with autism can do those things, doesn't mean they aren't disabled though. And for another people seem to think high functioning indeed means that, that a so called high functioning autistic person isn't "really that disabled."
To echo a previous poster I too am really sick of how trendy its become for people to declare they have autism because they read some articles and took a test on the internet. And those people always have one thing in common, they all declare themselves to be "very high functioning" .
They "identify" with autism but don't see it as a disability. Because you know, being disabled is the worst thing ever, right?
And the same thing extends to parents too, everytime you see parents posting on here it's always "I think my child has a very mild form of autism/is on the very high end of the spectrum."
Why do people do that? To distance themselves from autistic people who look "disabled?"

And as for the "but I don't want to be labelled" stuff, god that's even more infuriating than the high functioning stuff. It's really funny that its NTs who always go on about that, because they're the ones who are labelling people. They're the ones who "know a socially awkward man who really likes computers" and decide he must be very high functioning on the spectrum. Autism awareness is very much a double edged sword, because with it comes a glut of people deciding that every strange or socially awkward person they encounter must be "on the spectrum."

Everyone in my family has autistic traits, we say it a lot as we noticed it more when my son was diagnosed. Having autistic traits is normal, everyone has them. They are not the same thing though. Having an ASC is very very different, even aspergers which is not really diagnosed anymore is not what people think, it's debilitating. I agree that some adults are undiagnosed but not flagging up anything at school would IMO suggest she's doesn't have an ASC. My daughter and my husband are considered gifted in maths, they struggle socially, don't always get jokes and make odd social remarks but I'm 100% sure they don't have an ASC. My son does and he too is gifted in maths. I think there are some links between gifted children, autistic children and children with ADHD. But my gifted daughter always makes eye contact and understands that someone is speaking to her, she has never had meltdowns, she's never cried for hours because she doesn't understand the cues, she doesn't hide under blankets because it's all too much for her to cope with, she doesn't shake with fear and anxiety because she has an unexpected change in her school day. Those are the difficulties my son faces and to meet him you may not even realise he has an ASC. Over the years he's learned to mask it and cope. His diagnosis required hours of tests, years of video footage from home, teacher's evaluations and concerns from the school. I knew he was different at 6 months to 1 year, I didn't suspect autism though, ironically with my daughter at that age, I did wonder. But that's because my knowledge of ASC was based on common myths and half facts.

My Ds is 14 and undergoing assessment at the moment. We have always known but when he was younger he seemed to cope so we decided not to go down the diagnosis route. That was a mistake, secondary school and the teenage years have made things so much more difficult for him. I will always feel guilty for not pursuing a diagnosis earlier.

The last year has been incredibly difficult and the NHS waiting lists are long. He is 103rd on the waiting list for a specialist speech and language assessment. It looks like he won't now have a diagnosis in time for the start of year 11 in September. The senco said to me a few weeks ago that you can tell within a minute of meeting him that he has asd, not sure why his issues at school have been ignored for the last 10 years. He is lonely, isolated and very unhappy. I had no idea that children that went undiagnosed could struggle so much when they hit secondary school.

Yes, she is a bit socially awkward, a bit “quirky”, and suffers from anxiety, although that seems ok at the moment.

This doesn't make someone autistic so I'm assuming she has other traits and has exhibited them from an early age? My dd was diagnosed age 16. Autism effects every aspect of her life and she isn't a bit quirky and socially awkward. She has sensory issues around texture so doesn't eat, she cannot deal with change, she has meltdowns where she self harms, she is anxious, she is bullied, he siblings are scared of her due to her meltdowns. These are just a few of the things we have faced over the years. Getting a diagnosis has been hugely helpful for us as a family and for my dd but it is not easy and it doesn't mean my dd has been labelled. I would say that if you are not pursuing diagnosis them your child probably isn't autistic because we were at breaking point.

I have two boys diagnosed with autism. One has 'high-functioning autism' on his NHS diagnosis, so I'm going to use the term when it seems helpful. They said it's what used to get called Asoergers, but in his case it means he is disabled by huge anxiety and some sensory stuff, but when adjustments are put in place and he isn't forced to do things like be trapped in a small room with 29 children singing badly, then he is able to communicate and work round his autism.
My other boy is just as intelligent in I-type ways but much more disabled by his autism because his threshold for coping with life and change and sensory stuff is so much lower.
DH and I have been referred for diagnosis and referrals accepted, as have many other parents we know of autistic kids. I may look like I don't have problems if you meet me, but that's hiding a long history of depression and interaction with mental health professions. I would expect most self-diagnosed people to have similar, and awareness of possible autism might make CBT and other treatments for depression much more effective.

How long were you seeking a diagnosis for moomoo? Before you started seeking one, was your daughter not autistic because you hadn't reached breaking point yet?

Different families reach breaking point at different times, some never do because well, like every autistic person, every family, every situation is unique too.

Yes it's definitely not just about being socially awkward, although my Ds is. He is also very rigid in his thinking and is incredibly routine based. He has a whiteboard timetable at home that everything for the week is written on. He would be upset if times for something were changed for example. He also has sensory issues especially around food and has occasionally just shut down when we have eaten out as he finds it very overwhelming. Looking back I'm quite surprised we have gone this long without a diagnosis.

My son is being assessed for asd aged 11. We hit breaking point at 3yrs old but as he was ok at school (very quiet didn't disrupt) I was told over and over it was just my parenting. When he was weeing himself day and night until he was 9 it was me not potty training properly even though my other two were fine. When he was throwing his shoes off on the floor at the age of 10 and punching me it was all my fault. The only reason he is getting help now is because with the stress of sats hes started exhibiting behaviour such as loud droning humming and refusing to take part at school so they referred him.

It affects every part of his life. He is in a constant state of anxiety and even a mufti say sends him over the edge. He is picked on for being weird but would never tell on anyone as "you aren't aloud". It really annoys me when people say "oh yes I'm a bit autistic" as they have no idea what it's like for the person and the people around them.

Op I can relate.

My dd is at secondary school and is almost certainly on the spectrum (she stimms when she is excited amongst other things).

She has leaned to imitate others, she didn't use to make eye contact but does now. She used to struggle if she saw people outside their usual environment for example we were eating in a restaurant and a school friend came in with their family, he came over to say hello and she just looked at her plate and ignored him until he went away. We have worked on thus and although it is outside her comfort zone she has a few stock phrases to get through it.

She knows she is different to others. She was bullied briefly in primary school where she was told by a group of friends that she should be at the other school in our village with people who are like her (We have a school for children with SN just down the road).

We talked a lot at this time about how we are all different and for some people it's on the outside (user of a wheelchair) or for some on the inside (diabetic).

We talked about a diagnosis but she is actually quite happy in her own skin and likes herself a lot, she tells me this is who she is and and it doesn't need a name but the offer to get a diagnosis will always stand if she changes her mind.. She does well at school and has lots of friends and a couple of very close friends who accept her exactly as she is.

I do worry though that her mental health will be affected in the future. We encourage her to be herself at home and we all let our weirdness out here

For now we are ok but I know that there is a chance that might change in the future.

My Ds is also picked on at school. He is called names, had his possessions damaged and stolen and once a member of staff even mocked him. This has made him not want to engage with the small amount of support the school are offering, for fear of looking different.

They have told him that he must tell them when things happen unfortunately they don't seem to understand that he struggles to communicate anything to staff at school. He literally has no one at school that he could approach or trust to talk to. He has just resigned himself to the fact the school is awful and always will be. I'm hoping a diagnosis might just make the school put more support into place.

How long were you seeking a diagnosis for moomoo? Before you started seeking one, was your daughter not autistic because you hadn't reached breaking point yet?

What do you mean? We didn't know she was autistic for sure because she didn't have a diagnosis. However she has a long history of challenging behaviours where I have been hit, dealt with severe meltdowns and her siblings have been effected. I didn't know about masking so we didn't seek a diagnosis until she was self harming and suicidal. We were referred as an urgent case but it still took 18 months by which time, yes I was at breaking point.

My pp seems curt because the op mentions her child being 'quirky and lacking social skills' as a main descriptor of autism and this totally undermines what my dc and others and their families go through daily. This is why I asked if the dc had other traits.

Diagnosis can definitely be advantageous in certain situations. My child was diagnosed when they were quite young. Not sure if it’s the same there but here while special provisions were not really made in our uni entrance years, once you get into uni it confers numerous special provisions. In the uni course my child does the majority have diagnosed ASD (Aspergers when they were initially diagnosed as it was before the changes lumping everyone in together). So virtually everyone in the course has the same special provisions so essentially it is standard. Even my child sees the humour in this situation .

I started a thread on this recently here as I am unsure how to get DS some support at school given his difficulties interacting with his peers.

At the risk of inflaming PPs, at 8yo he was given an assessment by a both a child psychiatrist and a specialist child psychologist, which concluded that he was borderline for a diagnosis and that I would be advised to see how he coped with secondary school and adolescence - a watching brief basically to see if he could cope or not cope with the pressures of maturing, peer groups, social interaction etc.

He does not present with meltdowns or difficult behaviour, he does have anxiety, focuses on conversation that is of interest only to him and likes his life to be certain and organised (but when things change it doesn’t result in extreme behaviour, just a desire to check and recheck what’s happening). He struggles with other people in his space, with loud noise and doesn’t understand or like teasing. He is hopeless at standing up for himself against his more confident peers and considers himself “told off” when they have a go at him for being rubbish at football or clever at maths. He likes rules and hates it when his peers or anyone else for that matter doesn’t follow them.

Just because he doesn’t have meltdowns or hit or exhibit physically challenging behaviour doesn’t mean he doesn’t have autism. Just because he’s socially awkward and quirky and anxious doesn’t mean he has got autism. My question was how best to support him, is a diagnosis actually helpful in this sort of case as it won’t get him much tangible support but might it buy him some sort of understanding? I suspect others in a similar situation feel the same way.

By all means hop on my little thread if that’s a better place to discuss this issue, as the suggestion that having some but not all the characteristics of autism and to different degrees seems to be a problem for the people whose children have a diagnosis. And I do understand that those of us who have children who struggle socially, for want of a better shorthand, can’t begin to compare their dc with those whose lives are tangibly impacted every day to the extent that life is hard to live. But those of us with dc who struggle significantly with some aspects of life still need to discuss this. Physically my ds gets on with life but emotionally he is falling apart and he doesn’t seem to have the toolkit to deal with being 12 years old, at secondary school and finding his feet.

Sorry Moomoo, it's clear it's been a challenging road for you and your family. I was struggling with your logic about they aren't autistic if things haven't come to a head, but I see where you are coming from.

For those who have older dc and who haven't sought a diagnosis because they are coping, they may not cope when they go off to university or go out into the adult world of work and if they do turn out to be autistic, a diagnosis means that mitigation and help can be put in place. We hadn't realised how much we had adapted our lives.

Two books she might like - camouflage which is a graphic novel and 'm is for autism'.

Not to push her into a diagnosis but to give her insight into what autism is

My dd is markedly different from most children.
She doesn't want an assessment.
In some ways I wish she did as I think it would help her with recruitment.
She is so qualified and tanks interviews.

I have a diagnosis and ask for 15 minutes ahead of time to look at questions so Im not blindsided.