Parents who refuse to pursue a diagnosis for their children

[emilybrontosaurus]

I am just wondering if teachers or others express a child may have neurodiversity and the parents just sort of sit on that information - why? And could this be considered neglectful?

in my professional experience, the parents who deny there's a problem and don't want to pursue a diagnosis are autistic themselves and so for them it's totally normal

I came on here to say this. I'm not a proffesional.

A few years ago when my DS was 5 his teacher mentioned that she thought he might have ADHD. I knew nothing about ADHD aside from "naughty boys who didnt sit still"

I went home & researched and was shocked to find I was reading about myself as well as my son. I was diagnosed with ADHD a year later

My daughter has always struggled, shes very similar to me so prior to knowing about ADHD, I just thought she was sensitive like me. Once learning about ADHD it was apparent she had it too.

It was only when I started taking ADHD meds and I lost all my social skills ect that I began to realise I might be autistic. I was diagnosed with autism in July. My daughter has just been diagnosed with autism and ADHD this week.

I had absolutely no idea, because all of our behaviour was normal to us. Even now, people say what a struggle it must be, and some days it is, but mostly, this is just our normal? It's the way it's always been for us

Now I know about ADHD and autism I can see that its rife in my family,

The biggest thing about getting my daughter diagnosed has been so she can understand herself and seek the appropriate support.

I dont think my MH will ever recover from a life time of doubting myself, thinking I was a weirdo and struggling all these years, exuatsing myself by masking.

I hope my DD will be able to learn enough skills and coping mechanisms and able to support herself so shes not like me, in her 30's still struggling to understand herself and learning about herself.

It is life changing to know if your ND. We dont go around telling everyone, but it helps us all so so much knowing that our brains are different and learning about how we can support ourselves and each other.

I am very sad that I didnt know sooner, it has been a very difficult life and I have felt very guilty for my kids having a mum like me. Now I know I'm autistic and ADHD I just wish I'd known years ago so I could of helped myself/my children sooner. It's very sad

Not really, it's not to do with your own belief or stigma, it's societies. There's lots of academic research into the impact of stigma and labels on individuals throughout their lives, and it can be quite damaging

That’s why I keep considering getting an assessment for myself.

I suspect part of the reason for people not seeking a diagnosis for their children is because they are in denial.

@selffellatingouroborosofhate my concern is that these types of evaluations will spread not just to Australia but across many countries in the future or that biometric passport may end up including these types of things.

It's hard for us to imagine what types of immigration or health checks will be required in the future- but in the next 70 years, there's bound to be a lot of changes which is why diagnosis at say age 10 might have implications for the future, I don't think it's ridiculous to think these things through if people are more in the grey area of still deliberating.

Some people can, depending on what support theyve had growing up. Some people cant because theyve spent a lifetime being asked "why cant you act normally" "what's wrong with you" so they try even harder to fit in, be normal, ect because they dont realise it's an option not to be. They think they have to be like everyone else and their failing if their not.

I never said 'it was a Fucking label'. so please don't pin those words on me!

I said in my posts as and when he needs an assessment we will get one done privately if that's what he wants. He can also get it done as an adult if he wants.

I don't think you realise the waiting lists are at least a minimum of 2 years plus for getting assessed through school. You cannot just click your fingers and get one!!

There's a lot of naivety on this thread about how easy it is to get a child assessed. There is no money and no resources in the state system. Zero. SEN support is literally on its knees.

So people should maybe do some research before judging people about what happened 20 years ago when you were at school or what you've experienced in the workplace

What if you don’t suspect you are a Zebra as you have grown up with a whole family of Zebras who have never thought of themselves as anything but horses

How would you diagnose them?

Categorising and assigning labels to different types of mental functioning (including not just neurodiversity but also MH conditions and personality disorders) has been shown to create stigma and self-limiting beliefs throughout an individual's life.

Personally I think we should move away from assigning someone with different mental functioning as being "abnormal" - based on research there's no benefit to labelling someone as ADHD or autistic whatsoever and it creates more problems for the individual.

We can disagree - but there's a branch of psychologists & ND experts who agree with me, and it's backed by evidence, so it's not a wild viewpoint.

I do feel it is not ideal. Purely very often access to support and access is through that diagnosis. It also leaves a child without their authentic self information.

I note a lot more younger children tell people I have ASD I need xyz and I see that as being positive.

I would worry they won't have the information nor support when the impact becomes obvious. I have seen this done and it really impacted them as teenagers. It really screwed up their relationship and the teen has forgiven his parents for telling him.

Do you want to know who treats it as a stigmatising label?

MH services do - when they say they’re unable to treat you because you’re autistic!
This, even though the risk of MH issues is far higher in those who are autistic.

The autism services then say they don’t have the appropriate MH specialists to treat you and to go back to CAMHS…you end up with nothing.

It’s a complete joke.

So yes, having an autism diagnosis is stigmatising. You’re just lucky if you’ve never had to learn that.

Because we are surrounded by people labeling us "rude", "aloof", "thoughtless", "arrogant", "know-it-all", "hysterical", "overly emotional", "crybaby", "manipulative", "drama queen" when we get human interactions wrong and no matter how hard we try, we can't get them right?

Because we blame ourselves for not getting social interactions right and it becomes suicidal self-hatred?

Because we miss out on jobs because we didn't know we could ask for reasonable adjustments at interviews?

Because the NT community already roll their eyes when someone says "I'm autistic" because of the number of self-diagnosed people out there saying that and my personal experience of adding "formally-diagnosed" is that their attitudes change markedly and favourably?

Because having a multiple page diagnostic report caused an immediate, substantial, and favourable readjustment in my employer's attitude towards me?

Identifying the cause of symptoms/issues

Having something specific to research in terms of managing the condition

Something tangible to say when requesting support from school and other services.

Something the child can identify with as they get older and better understand themselves

To explain why child has the behaviours/symptoms they do

To ensure support is beneficial

If you don't "label" someone as Autistic, how do they get the support at school or work they need?

1. There's more to support than CAMHS.
2. My personal experience of CAMHS as an undiagnosed autistic child is that the CAMHS depression offering is actively harmful to autistic children.

Perhaps getting your autistic child out of CAMHS "treatment" might benefit them?

It's also not "stigma" that causes a service to refuse to support children that it doesn't have the expertise to support!

I think a lot of people only think of the support a child needs and don’t always realise how difficult teenage/adult life can be. I work with lots of adults who have not been diagnosed but struggle to manage an independent life (often after university). The support available is very, very limited without a diagnosis and takes much longer to obtain as an adult.

My SIL doesn't want her child diagnosed.

She pulled him out of school in year 2 because he was having problems and was very anxious. Autism and adhd run in the family.

My DD hasAuDHD.

He is now 16. No GCSEs. No label. Home educated but doesn't have the qualifications he needs to get into a college course.

He's now just started studying for his maths and English GCSEs because that is what college want to allow him on a mechanic course.

I'm not convinced that it was a good path for him.

My DD has had adjustments. She is currently at university with disabled students allowance and a whole raft of support that her diagnosis has unlocked.

When she moves on to employment, she'll be able to look at Access to work and will be (hopefully) able to get reasonable adjustments - I know this is likely to make it harder for her to get a job in the first place but hopefully it'll be easier to keep.

@selffellatingouroborosofhate I agree with this, CAMHS isn't good for neurodivergent children or teens at all. They decided one of my children had something wrong with them, but they weren't sure what! We just left. The best is therapy where the therapist has experience and interest with ND people but they can be hard to come by.

One parent like this had had her teenage son assessed, she found out he was autistic and kept it from him.
She was/is adamant he must not find out and asked us to promise to never to bring it up with him or say anything about autism in general.
Its sad because the child still can't access the extra help he needs as the mum doesn't want to risk him finding out about himself and nobody can force her to accept extra help

My mum did this with my sister. Didnt tell her she was autistic and told all of us not to tell her either. She was diagnosed when she was 4 or 5. At the time they said she would be better suited in a school for her needs and my mum said no and sent her to mainstream

She found out she was autistic when she was in her 30's and someone at work was slagging off an autistic man. Sister had defended him and the person had said "your only agreeing because your autistic too, your just like him"

She went home, spoke to my mum and other sister ( I wasnt there for any of this ) and they had started laughing and said "well you are, you were diagnosed when you were 4 or 5"

Sister is NC with the entire family now. And I get it. I was diagnosed with autism in July and I said to my elder sister " I cant believe I'm like dsis can you?" And she had said "well yeah, we always knew"

Its fucking tight not telling people. I was okay socially because I heavily masked but my MH will never ever recover from the years of self doubt and hatred I had for myself because I couldnt keep up with everyone else and I found it so exhausting. Couldnt understand the way other people thought ect.

My main reason for getting my DD diagnosed was so she could learn how to love and accept herself for the way she is, the benefits of all the supports is a lovely bonus but the main thing I wanted out of this was for DD to he able to understand herself.

People always say diagnosis doesn’t equal support/funding but I do not know this to be true.

before diagnosis kids were labelled a multitude of negative labels. After a diagnosis there is (or should, be) more understanding about why somebody acts the way they do.

unfortunately you have some incredibly ignorant misinformed people who believe

“everyone’s ASD nowadays”

”no such things as adhd just need a smack backside”

he’s just slow (thanks MIL)

she’s just not listening/naughty.

I acknowledge that at the moment you NEED it to access support, which is a problem. The academic theory I've read up on is basically any child is able to access support if they're day-to-day functioning is severely impacted by their behavioural problems. But they aren't given a label - they're just offered the tailored support that they as an individual needs.

Another issues with labels, which I won't get into too much, is that studies have shown there is no consensus between clinicians. For example, they've given the same kid with same symptoms to multiple specialists - and each one gives the child a different diagnostic label.

What the child actually needs is tailored support to help them function and flourish the best way for them - not an arbitrary label that then limits/stigmatises them for the rest of their life (imo).

They should have the expertise! That is my point. Why don’t they? Why are they limiting themselves to treating NT children?

Autism services say they don’t cover serious MH issues.
CAMHS say they can’t treat MH issues in a child with an asd diagnosis (other than medicate).

You seriously don’t see any problem with this?

At the school I work at, if a pupil displays signs of NDD but doesn’t have a diagnosis we just adapt teaching/pastoral support accordingly as best we can.
The waiting list for diagnoses is so long that if the process is started in, say Year 9, they won’t even reach the first stage of an appointment until after they have left school anyway. It just means we don’t get any additional funding for them but then we don’t have any funding for anything else, so!

@MsCactus

"Another issues with labels, which I won't get into too much, is that studies have shown there is no consensus between clinicians. For example, they've given the same kid with same symptoms to multiple specialists - and each one gives the child a different diagnostic label."

Could you please post a link to these studies?

If you don't suspect you are a zebra and no one around you has an issue with your zebraness why would that person need confirmation of being a zebra?