Is anyone the parent of a child with asd and not seeking a diagnosis?

[coodawoodashooda]

Not looking for a bun fight. Just trying to sort out my thinking. Anyone with any of their own insight that they'd be willing to share?

Realise this might read like autism
and high intelligence are mutually exclusive - they’re obviously not! But they’re not the same either.

“the overly formal communication style that are also part of the diagnostic criteria”
During DDs consultation the Psychiatrist said to her “You have a very formal way of speaking” and she retorted “I can speak informally. I use contractions when I’m speaking informally”. 😂 I love that girl.

@ParrotPoppy I just meant in terms of whether there were early developmental signs or not. I didn't spot any, I still don't see any and I have trawled through hours and hours of video and photographs. Nursery didn't spot it either. That's what I mean by, there were no early signs, it only seems to have manifested in the last year or so.

@Ifyouknowyouknowyouknow
DS also has a very well rounded intelligence. He's not just super good at reading or maths, he can very much apply these skills to multiple contexts. He gets 10/10 in comprehension tests, he can recall characters, plot, understand characters motivations and emotions.

I guess I am just saying that some children have a very non-stereotypical presentation, and I'm not sure how helpful diagnosing them as autistic is, when they are unlikely to receive any additional help or they will be stereotyped as having behaviours that they don't possess. Both have been the case with my DS. Time will tell whether the £2k(!) diagnosis was worth it or not.

I didn’t say early reading was an indicator on its own, in fact I used hyperlexia more than once. The “little professor” descriptor is used for those without an intense special interest as well as those with. Neither did I say being bright and knowing fact were part of the diagnostic criteria, but they can help to build a picture. Nor that being bright and autism were the same.

My point is that it seems that the person who did @AutiMum’s son’s assessment referred to high intelligence, and only high intelligence, as an indicator of autism. It’s not.

If she identified something else then it seems it wasn’t recorded on the report which is an error.

@Ifyouknowyouknowyouknow Spot on, that's exactly what the report says.

To be quite honest it doesn’t sound as though he is autistic. And it doesn’t sound as if the diagnosis has benefited him in any way.

It’s common for gifted children to struggle socially because their intellectual
debelopment is out of step with their emotional development, and both can be out of step with their peers. Things usually resolve as they get older and peers catch up a bit.

@Ifyouknowyouknowyouknow I would say he definitely fulfils Criteria 1, the social and communication impairment. It's Criteria 2 where it could go either way, in my opinion. You need to have two from Criteria 2 and he only really has the sensory differences, and I'm not sure they can't be explained by a different diagnosis (like ADHD), or if he will grow out of the hyperactive behaviour altogether.

@ParrotPoppy Huh, I never thought of it like that but you're right.

@AutiMum Perhaps DS has ADHD or another comorbidity that means one diagnosis masks signs of the other and vice versa.

@ParrotPoppy Yes, he's going to be assessed for ADHD.

I also think that a lot of these conditions are one in the same, to milder or different degrees. I've met many children and adults who are solely diagnosed with ADHD, Dyslexia, Dyscalculia, Dyspraxia etc. and so many also have ASD traits (perhaps not enough though for a diagnosis) or vice versa, the ASD diagnosed person also has traits of the other co-morbidities.

It wouldn't surprise me in coming years if all of these diagnosis become amalgamated in some form.

Nobody knows my child is autistic unless they need to know or they choose to tell them. I mean what’s the alternative? School tried to force them into an environment that was traumatic and punished them when they couldn’t manage it. As others have said.

This was a happy, confident child at primary and then the bomb exploded when they transitioned to secondary. Nobody even suspected autism because they are highly social and an expert masker. It has taken them years to accept their diagnosis but hopefully that will mean a better outcome in the long run. It has definitely opened doors to support we’ve needed that would otherwise remain firmly closed.

This was exactly my experience with DC3. He was extremely social, popular and gregarious at Primary but not at all bothered about academic work. Then at Secondary school his social interactions became difficult as they were often inappropriate and perceived as 'weird' which led to him being isolated and laughed at. He changed into a very anxious and depressed (leading to self harming) teen and his school were absolutely horrendous in the way they dealt with him.

We were told via a full NHS ADOS assessment which included observation at school, paediatrician. clinical psychologist, SALT and OT that he did not fit the criteria for ASD at age 11 so no support at school and I had to remove him at age 15 due to the school's behaviour. He was diagnosed with learning difficulties at that time though, still no support or EHCP. He actually decided to learn to read at age 8 (long after the rest of his peers) as there was a specific of his that he wanted to read about. His reading age came out at age 16 in his assessment at age 11.

He was finally reassessed at age 17 again via a full ADOS assessment and I was told it was so obvious it certainly should have been diagnosed at age 11. His entire statutory school years were completed fucked up and I'm still trying to fight for support to correct the damage. Must more difficult now he's an adult.

I knew from about 18 months. He lined his Thomas Engines up and got distressed if anyone moved them. Used to spin around and around, sensory stuff like certain clothes and wanting to be stroked. Would refuse outright to do anything he didn't want to do. Never has ''meltdowns' though.

It took 2.5 years for the initial assessment and 2 years for the reassessment.

It would be foolish. and a lack of duty of care, not to try to get an assessment if you suspect it IMO.

It annoys me that people see it as a 'label'. The paediatrician which misdiagnosed him said that to me 'why do you want him to have a label'. I don't and it's not. It's a diagnosis and an understanding of why he is like he is and means he can get support for a condition that has had a massive detrimental effect on his life!

DS currently gets enhanced rate PIP and LCWRA as at the moment there's no way he can hold down a job. He also has an Adult Disability Social Worker and is eligible for Supported Living when he's ready for it. He wouldn't have got it otherwise.

Your son has good early language skills, has superb executive functioning from the sound of it, is doing well at school...
What was it that made you get him clinically assessed and pay thousands for a diagnosis? There must have been something.

I think for a lot of people, it's not refusing a diagnosis as much as just being really uncertain. Is functioning impaired? To answer, you have to know what proper functioning is, but there's so much variation in the way people develop and behave. People on this thread seem quite certain about what they've notice, but IRL everyone is secong guessing themselves.People want evidence that their children are neurotypical, but what would that be.

What an awful experience for your DS (and you) @ShootingForTheMoonLandingOnMyArse . I can imagine how angry you must feel with how badly he's been let down, and his school years wasted.

We were also told that my DD wasn't autistic first time around. We didn't accept this, though, and demanded to know what was wrong with her then, as she clearly wasn't normal. They hummed and hawed and realised that our interview detailing all her repetitive and obsessive behaviours hadn't been taken into consideration, so we were then given the diagnosis of atypical autism for her. Interestingly, we were asked whether we "accepted" the diagnosis. We did.

I don't necessarily think she's atypical; girls present differently and their experiences are often overlooked.

After her dx, DD was given regular talking therapy at the CAMHS clinic (like child level CBT) which we were told she could now have due to having a diagnosis. Those without a dx may get some help, but not ongoing help from a psychologist.

The diagnosis certainly opened that, and many other, doors for her.

Like you, I hate when people use the word 'label' it shows their own negative attitude towards autism.

”People on this thread seem quite certain about what they've notice, but IRL everyone is secong guessing themselves. People want evidence that their children are neurotypical, but what would that be.”

I think it is more as a parent, your own functioning is impaired by them, which makes you seek a diagnosis. For example - Do you find yourself getting anxious on public transport in case your child makes an embarrassing scene about not sitting next to a stranger? Does it seem out of the question to ask your child to run basic age-appropriate errands like popping to the shops for you, because you know they’ll become overwhelmed? Do you need to avoid anything or excessively plan everything-eg- going to the cinema, to avoid your child having a meltdown? Is it an extraordinary nightmare trying to buy them shoes and socks they’ll actually wear?

If you aren’t, as a parent, struggling and the child isn’t struggling with everyday things either, then I don’t think there is an impairment there.

@EndlessTea I don't struggle with any of the things listed, nor do I need to adapt his or my life, nor do I see my DS as impaired (though he does admittedly struggles with some social interactions).

@Summerlaundry To be honest, the main reason was the suggestion from school who said they saw traits of ASD. I went into panic mode and felt like I needed to proactively do something. Would I make the same decision now it has been a few months and I've had time to process, research etc.? I'm not so sure.

My DS does have some social differences and difficulties. He is different from his peers in that respect. He does not get some social nuances, he misses social cues and some children (and adults) find him overwhelming and annoying. He is very hyperactive.

Has a diagnosis helped him or got him extra support in the immediate? No. It may help in the future though.

Has it hindered him in the immediate? Perhaps, as school has prescribed characteristics to him that don't exist and I feel there's an element of him being limited from his potential, with 'he's autistic' used as the reasoning.

My son was diagnosed at 6 years old, he needed very little support at school but since leaving school, well I’m so glad he had a diagnosis! It would have been incredibly difficult to get the support he needed.
I worked in a school where many teachers could not see the benefit of children who were seen to have ‘mild symptoms’ (not my words) being diagnosed or encouraging parents to look into diagnosis. It’s very short sighted as no one knows when support may be needed, others seeing the autism as being mild is so wrong, it’s not a linear spectrum! My son finds life much more difficult now as an adult!

Thanks for clarifying about the assessment @AutiMum
It sounds as though it was comprehensive.

Definitely a good idea to go for an ADHD assessment too. There is a vast overlap of traits between many conditions and sometimes it's hard even for the experts to pick which one is the most relevant. In one of DD's assessments, it states that her dyspraxia was so much to the forefront, her other presentations were missed and further testing was recommended as ASD seemed a very likely conclusion.

The thing is with very many people, the initial diagnosis is not necessarily the one that affects someone's life the most, sensitivities and coping mechanisms and other factors change a lot through childhood and into adulthood. When co-morbids are present, sometimes one becomes more apt and if that's the case, it's referred to in medical records as the Primary Diagnosis.

Pretty sure my best friends sister is.
Always struggled from a very young age with social events, friends etc. Teacher at school noted concerns and said that they thought there may be an issue. Friends parents ignored it. Now she's 35, never visited a hairdresser or dentist and always struggles with work and has severe anxiety and OCD.
Makes me sad for her as with the right support, things could have been different for her.

It affects other people less because the autistic person is able to mask it. It does not mean that the autism is "less severe" or "mild" for the autistic person. In fact, the masking that those who you class as being "high functioning" or with "mild autism" (what a joke to anybody autistic!) often causes additional mental health issues on top of the problems with autism itself. Studies show this clearly. Please stop making damaging comments. Someone's autism isn't categorised by how much they're able to mask it (with repercussions for them) and shield YOU from it. This whole perspective is about how the autistic person can "fit in" to your moulds or not, not about their experience of life. Please stop it.

I am that person, taught themselves to read at age 2, offered a private school scholarship at age 4 (not taken up). Miles ahead throughout primary school, passed 11+ with flying colours etc etc etc
But while my parents always knew there was something different about me (they'd never have said wrong with me even though I would), they never tried to get me a dx.
I struggled all the way through High school, was labeled "naughty" and "disruptive". Always knew I was different, was desperate to fit in, would have loved to be able to walk in to a full classroom and make friends like other people can.
The struggling has carried on throughout adulthood, looking back now I can see how incredibly vulnerable I was/am and how this led to me being in an abusive relationship. Pretty easy to isolate someone who doesn't do socialing anyway.
I finally got my ASD and ADHD dx 5 years ago at age 45. Yes I still have the same issues, but now I don't fight them.

I empathise so much. I am so sorry this happened to you. It happened to me too. And most of my autistic female friends and we are trying to undo the damage but it can never be fully undone - not understanding who you are or why some things are so hard, feeling like an alien for much of life. But with parents who think it's fiiiine because you mask and get good grades.

I really hoped parents now had got past seeing autism as a stigma or "label" 🙄🙄 and would want their kids to have support and be happy and not struggle with mental health issues from years of not being understood and not understanding themselves.

I'm thinking back to when my now 12 year old was in pre school. Doing well. Happy. Healthy. She is now an absolute wreck who barely leaves the house and no longer goes to school. I can't imagine how the past few years would have played out without the diagnosis being in place as soon as we were able to proceed with the assessment.

I think back over my own life experiences and having a firm diagnosis and understanding of myself would have saved me from so much hurt, trauma; rape... Being able to advocate for myself because I understand why I'm different regather than hiding away thinking I am weird has been life changing.

Waiting until support is needed is leaving it far too late

Words. Yes, all of this. Not a single person I know with a diagnosis regrets it, that says it all.

Thank you. Exactly.

Nope. That would be classic discrimination: assuming that because some of X group of people do this, all do.

No, that is not reasonable, and frankly it's shocking that you think that it is. Try adding another word for X in place of autistic.