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?

Plus a lot of kids without conditions just don’t get on well at school, myself included! I don’t wish to deny anyones personal experience so hopefully I’ve not written anything that comes across that way.

I'm interested to hear more about what additional support is available for DCs after diagnosis? Awaiting assessment for DD but in the meantime school has already implimented an 'autism plan' which is working really well so diagnosis was not needed. Despite having confirmed delayed gross motor skills she's not bad enough to need 1:1 support and she isn't eligible for any mobility related benefits or adaptations so diagnosis won't change that. Speech and language say she understands language enough to communicate her wishes and they won't do anything about her stammer or weird accent since she's too young. Peadiatrician advised there are no outpatient psychology services for children so no help for her anxiety. Is this just my experience?

Awaiting assessment for DD but in the meantime school has already implimented an 'autism plan' which is working really well so diagnosis was not needed.

Would all that support be put in place if you weren’t seeking a diagnosis?

Yes.

It is all need based, regardless of seeking diagnosis or not.

@EndlessTea

Good question. It was the school that advised I seek diagnosis and they put the 'plan' in place to manage the situation in the meantime.

she isn't eligible for any mobility related benefits or adaptations so diagnosis won't change that

Are you sure about that? We received DLA with a mobility allowance for DD, not because she has any physical problems - she has none - but because she was not safe outside alone: she had no sense of danger and was not safe near traffic unless constantly monitored.

It may be that different areas have different things, but our CAMHS offered parent groups, liaison with the school, social skills training, signposting to local services (we the diagnosis during lockdowns so it was all a bit weird - stuff that would normally be face to face was done online, certain groups weren’t available, etc), they call us every few months to check-in with how she’s doing, how she’s coping socially, how she’s handling growing up, etc. We didn’t take a lot of it up because they didn’t necessarily suit her or our needs. They shared quite a lot of resources.

My DD is scared of everything EXCEPT 40mph traffic where she'd rather launch herself into the road than brush past a branch or step over a pavement anomaly.

I could really do with funding for an occasional taxi since I don't drive and DD can't go on the bus re noises, movement, smells, that large step up with her motor skills being as they are she needs lifted which is getting harder as she gets bigger. Maybe I'll apply again.

@containsnuts

My DD is scared of everything EXCEPT 40mph traffic where she'd rather launch herself into the road than brush past a branch or step over a pavement anomaly.
I could really do with funding for an occasional taxi since I don't drive and DD can't go on the bus re noises, movement, smells, that large step up with her motor skills being as they are she needs lifted which is getting harder as she gets bigger.

Do use the Cerebra guide for DLA it's very helpful.

cerebra.org.uk/wp-content/uploads/2021/07/DLA-cerebra-dla-guide-jun21.pdf

I have diagnoses of, among other things, ASD and coeliac disease. I'm trying to imagine a thread called "Is anyone the parent of a child with coeliac disease and not seeking a diagnosis?" and to be honest a lot of the types of things people say when it's ASD would just never fly.

Like:

• I don't want a coeliac diagnosis because I don't want to put a label on her, she's a lovely girl
• We have a gluten free home and put him on packed lunches and he's fine, so he doesn't really need the label and the testing is stressful
• The label will give him an excuse for things like his picky eating and spending so much time in the bathroom, it's better if he learns how to behave
• I didn't want her to have the coeliac label because I don't want her to feel there's something wrong with her, or to put limits on her
• He might want to go into the army when he's older and having an official coeliac diagnosis would prevent that, so we're avoiding that label
• The label is given out too freely these days, people with barely any symptoms get a coeliac diagnosis. She's not like those poor kids with real coeliac disease suffering obvious malnutrition, who would've had that diagnosis even thirty years ago.
• If he had the coeliac label, other people would make assumptions about him that aren't true — they might assume he's lactose-intolerant just because lots of other coeliacs are.
• You don't need a diagnosis, access to gluten free meals in schools/hospitals/prisons/wherever should be provided based on need, so nowhere should be insisting you produce a medical diagnosis before supplying specialist meals
• If she has a label I'm concerned she'll feel different to her friends, and she's actually really good at coping with the diarrhoea

😬@FurryDandelionSeekingMissile

Very well put!

Celiac disease has definitive biomarkers though. Honestly, given the history of psychiatry, and the behaviour of pharmaceutical companies, it's perfectly reasonable for people to be cautious about the mental health industry. Diagnoses suit some people really well but not others.

@Summerlaundry

ASD is not a mental health condition.
It's neurodiversity. Very differnt.

@FurryDandelionSeekingMissile

This is one of the best posts I have seen explaining this.

Help with understanding who I am. That it's ok for me to be useless at some things and I'm still a valuable person worth loving and respecting despite those areas where i lack skill. Therefore not having my self-esteem completely trashed by constantly being told that if I just tried a bit harder I could do everything everyone else can. I can't.

On the flip side, I outperform even very able NT people on various things which have enabled me to carve out a very successful career. Had I been diagnosed in childhood, felt secure, not having to mask and hide myself constantly for decades, I could have achieved far more with the energy that took from me. Productive things. Things that would have meant I pay even more tax into the system.

I could have had reassurance. People to teach me about budgeting, social relationships, self-care, recognising and naming feelings, controlling impulses, to foster self-worth. All kinds of things that I needed and did not get, not in a way I could access them. Like many undiagnosed autistic people.

I spent many of my formative years feeling very lonely and suicidal.

I would not have been so unhappy for much of my life if I had had a diagnosis, if that has any value to you. As a PP said - while extra support would have been good - the self-understanding that comes with diagnosis is the most important thing and oh my goodness, I can't imagine how I could have flown if I'd had that 30 years earlier. That is what I will be giving to my children.

I don't blame them for not knowing about autism. But it was obvious I needed help.

They ignored it.

What is disturbing is reading posters on this thread proposing to do the same - which was bad enough before - even though now the information on autism is widely available.

You're right. So why the involvement of mental health professionals then?

I am still unable to accept myself in my late thirties, 25 years after my diagnosis. I didn't know there was anything 'wrong' with me until my diagnosis. I knew I was quirky and a tomboy and the best in my grade at maths. With the diagnosis I felt like I lost my identity, like my strengths were not real strengths but symptoms.

Everyone my age seems to have been diagnosed in adulthood and had a very different experience to me.

Yes, exactly.

And by no coincidence, it is these exact same people generally who now say it is "overdiagnosed" even though no reputable study has ever suggested this. They wish to believe this because then they do not have to face how badly they failed their children. But worse than that: they would rather encourage their children to fail their children, than admit their mistake, which is arrogance and callousness triumphing over compassion and kindness in the extreme.

As someone who lived with undiagnosed ASD my entire life until I was in my early 20's I would probably seek a diagnosis. It caused me a lot of mental and physical health problems that plague me today (IBS, Anxiety etc.). I understand the path of thought to a degree because I myself have thought "what if I just didn't get diagnosed" but it was not good for me. If the diagnosis process scares you (pure speculation), you could talk to a GP about it or even ask a question to a GP on a site like babyvillage.org/

Yes, coeliac disease does have biomarkers (though it sounds like you'd be surprised how fuzzy things can get around the edges), and my analogy was not intended to be exact in every particular, just to highlight how some of the arguments might come across with a less…contentious diagnosis.

I also understand the caution you're talking about. However, there aren't very many diagnosable conditions where it's quite so socially acceptable for parents who suspect their child meets the diagnostic criteria for that condition to decide not to request investigation or assessment. Even ones without biomarkers, or other conditions that are diagnosed through behaviour or difficulties or descriptions of inner states. It doesn't help that getting that assessment is such a massive and lengthy undertaking sometimes.

Thank you for explaining. Sorry, it must be really frustrating to deal with people all the time not understanding, like me.

No, this is not just your experience. Sadly if you want support, the immediate answer is always "no". You have to fight and fight and fight for it even when they are legally required to provide it. They'll always tell you they aren't even when they are.

Services being shit isn't a reason not to get a diagnosis though. In fact it makes the fight for support a bit easier because there is specific legislation requiring public bodies to provide it. And also, as I said above, it's about self-understanding as your child grows up. Do not under-estimate what that - and the support of other autistic people who understand - is worth to them.

You don't need a diagnosis, access to gluten free meals in schools/hospitals/prisons/wherever should be provided based on need, so nowhere should be insisting you produce a medical diagnosis before supplying specialist meals

I posted the equivalent of this, not because I think it should be a reason not to seek a diagnosis, as I also posted I think parents should pursue a diagnosis, but because people do need to be aware support is needs based, not based on a diagnosis. Not least because a diagnosis takes time and if they think support is diagnosis based that’s time spent without support when they could actually be supported. If people don’t know what should happen advocating for themselves/their DC becomes much harder, and sadly those who can advocate well get better support.