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?

not all jobs lend themselves to this. Can you imagine a GP with noise cancelling headphones on, a pilot walking out of the room when her co pilot cracks the water bottle, or a lawyer out of court?

Thank you for demonstrating my point with these sterling examples of where knowing that you are autistic whilst still a child, before you set your heart on or start on a career path would be really helpful to the autistic person and to everyone else.

• Do you actually want to be in an aircraft flown by a pilot whose judgement might be impaired at a key moment of landing because her co-pilot crackled a water bottle and that causes her sensory issues that she has to start masking to hide her reaction to. I want her either to be able to say to her colleague "please use a bottle that doesn't crackle" and have that request honoured, or to not be flying the plane at all. I want my pilot to be focussing on flying the plane safely, not masking.
• Do you want to represented by a barrister who is focussed on trying not to squint too obviously under the courtroom lighting instead of her brief?
• Do you want to be examined by a GP who is trying to mask her tendency to stim instead of listening to your symptom description and thinking about what your symptoms might mean?

I don't want these safety-critical (I include criminal law here because appeal judges say "unsafe conviction" for a reason) professionals fighting an inner battle against a disabling condition to cope with hiding the effects of that condition, I want them fully focussed on doing their job. And that might mean a barrister being allowed to ask "your honour, may I put my sunglasses on?" with an understanding that the judge knows why and will always say "yes". It might mean a GP having an appointment left unbooked every afternoon. It might mean reusable water bottles only in the cockpit when flying with a particular pilot. If adjustments can't be reasonably made, the person isn't suitable for the job. Other jobs exist. You don't have a right to pursue any career you like regardless of the impact on others.

You accuse me of only seeing my own experience, yet you seem yourself to forget that, when choosing a career path, other people are affected by that decision too and there are jobs where an unsuitable postholder can ruin or end lives. It saves so much time and money and effort for the person considering their career path when that person knows not to train for something they are fundamentally ill-suited to or won't be allowed to do. This is well-understood already and is why sixth formers applying to medicine degrees take UKCAT, to filter out at least some of the people who shouldn't be doctors.

I'm not taking what you say as a personal slight, rather I'm wondering how I can explain more clearly than I already have done that, if your disability means that you aren't suited to a job even with reasonable adjustments, you should do a different job instead of struggling to make your square peg self fit into the round hole of a job where you will struggle and your performance be impaired.

People have written, on other threads if not this one, about how autistic people end up doing 12 hour days to cope with eight hours of work, because of the unadjusted environment or unsuitable work impairing our performance. Don't we deserve better than that? Don't we deserve to know what we need from the earliest possible age so that we can try to choose jobs that fit our skills and requirements well?

It would be like a gay man or lesbian pretending to be straight in order to move to Dubai...

I think the value and implications of diagnosis is complex for anything outside of the purely medical arena. Even the term ‘diagnosis’ is rooted in a medical model, and therefore the assumption is a pathology or wrongness of sorts. I tend to consider the social model of disability in this instance, which really focuses on difference only leading to impaired functioning due to deficits in the environment- not the person. I think this is very much the case with neurodivergence. I have more knowledge of mental health when it comes to diagnosis but there is some cross over in terms of the stigma attached to diagnoses and barriers that can be faced due to this. If an adult is seeking a diagnosis - for ND or their mental health - I would always make sure they have the capacity to understand the potential implications of this (positives and negatives) and that they consent before assessment. Issues of consent and understanding are of course more difficult in children, particularly those with additional needs, and this can be a difficult ethical issue for parents too.

I do agree that we should not need ‘labels’/diagnosis in order to understand a person or to assess their needs or functioning, but currently these labels provide a short hand and common understanding for professionals/people to gain a quicker sense of what someone’s needs or difficulties may be. Also diagnosing can be a gateway to receiving support, albeit if that support is limited. I do believe there are alternative ways of conceptualising someone’s experiences but I think there needs to be a massive paradigm shift for these to be mainstream.

The diagnosis itself can also be validating to people/parents, as often it locates the ‘issues’ within the child’s neuropsychological functioning - and not the parenting. This is very much a double edged sword though, when I worked as a psychologist in CAMHS I was horrified by the amount of parents who were seeking diagnosis for their traumatised children who were struggling due to their chaotic home environments. There was considerable defensiveness from parents and very little insight into how their behaviours were impacting their children, and how making changes to the family dynamic may help. Instead the focus was very much on labelling the child to locate the dysfunction within them, when it actually resided in the family dynamic (and often unresolved intergenerational trauma). I am very aware as a clinician of the power of a diagnosis, women are still labelled to this day as having personality disorders when actually they are trying to recover from abuse, this diagnosis is then used against them in the family courts. It is a massive and complex issue.

I have digressed, TLDR: whether or not a diagnosis will hinder or help depends on many factors and is a largely personal decision. I am glad to hear that many on the thread have found getting their child an ND diagnosis to be a positive experience.

<Manager walks into office where person is crunching their water bottle and Emily looks as though we might need a bin bag, a shovel and an alibi>

'Ugh, that noise is awful, don't do that'

'What? Why? It's not bothering anybody'

'Yes, it is.'

'We've got a small office spare now Fred's left, who shall we allocate it to? A knob with a penchant for crunching water bottles - or how about we give it to Emily? She finds it really difficult with the radio on and people taking calls at the same time around her, but she'll be able to concentrate with an office of her own - she's Autistic, so it's a fair and reasonable adjustment for her to have it, not just give it to George because he's been here a bit longer'.

'Earphones aren't allowed in the workplace - oh, they're filters to take out some of the noise. Fair enough, are they Loops or Alpine? Great'.

'Are the filters helping enough? OK, how about we shift your desk to the other side as far away from the radio as possible - or is it the visual noise as well as the audible stuff? What would you think of sharing with Alex instead? It's probably a bit calmer tucked away down there and he's only in 3 days a week'.

<a meeting somewhere else>

'It's a good idea, but we'll have to make some changes before dropping this on everybody - it won't work putting Emily right by the door/radiator/kettle and sink, so how about we put her here and then she's not got to deal with everybody walking behind her to make coffee.'

This is all very interesting; thank you for sharing your thoughts.

when I worked as a psychologist in CAMHS I was horrified by the amount of parents who were seeking diagnosis for their traumatised children who were struggling due to their chaotic home environments. There was considerable defensiveness from parents and very little insight into how their behaviours were impacting their children, and how making changes to the family dynamic may help. Instead the focus was very much on labelling the child to locate the dysfunction within them, when it actually resided in the family dynamic (and often unresolved intergenerational trauma).

Do you have any advice about differentiating between these two causes? I can imagine in a lot of cases it is either neurodivergence or trauma, but presumably in some cases it can be both?

I am confident that my child's autism diagnosis is correct but I do also have a lot of anxiety about dysfunctional family dynamics as my husband's family of origin was very dysfunctional. I don't think our family is but the stresses of parenting an autistic child, especially when DH did not have great parenting models, take their toll.

Who knows but it’s not unusual for families to want to move to Australia for example? I mean perhaps you have family wherever it is and would like to live near them? Perhaps that’s where the work is?

Not really. Autistic people are treated very well in Australia, as are other disabled people. They just don’t want any more.

I have no words for this, tbh.

Well yes it’s ghastly but that’s the reality of diagnosis. If you identify a group you can then treat a group differently. That might be positive but it really isn’t always so.

@emilybrontosaurus you're comfortable with your choice and I see what you say regarding how it has been for you.

When kids are involved it can feel a bit unkind to deny them the opportunity to know early who they are. My feeling is that facing reality is important and less psychologically damaging, even if unpleasant.

I refer to what @Jellycats4life said regards knowing in oneself. My own child would often say why is this happening, what's going on, I'm weird. Now instead when struggling it might be 'I don't like being Autistic'. And I can then say, I think this experience is pretty common for alot of people in your position. Seek out the other people like you at school. You're going to have similar feelings about alot of this. Oh did you know that xyz is Neurodivergent? Imagine they had a nightmare at times growing up. Do you think your favourite rap artist Eminem is ND, he references it in this song. Have you heard it?'

This conversation is so much more authentic than ignoring it.

@NameChange30 I believe there will be some literature to connect being ND with greater childhood trauma so the 2 will be interlinked. I know my own child has had a fair bit of trauma to deal with. I believe some of the environmental trauma was in direct response to being ND also. For example, mum can't understand what's going wrong, blames herself, feels resentful, attachment formation can be much harder as child is not responding to mum in the typical way. The stress of such parenting can impact mums well being and that of the entire family which then impacts child. This is going to be particularly so if mum is NT I feel.

On that, I'd be incredibly cautious of any institution that spends too much time focusing on the trauma element and ignoring the fact a child is ND! I experienced this pre diagnosis.

Autism and adhd are NOT learning disabilities.

Many countries do NOT refuse immigrants who are autistic. NYlZ and Australia prohibit applications for permanent residency for conditions costly to health services- ND often isn’t.

Get your facts right.

You're blaming the diagnosis and not the policy, which is discriminatory and should be unlawful.

For anything else - racist, sexist, homophobic - you wouldn't say "oh well you just shouldn't admit to being black/female/gay" would you?!

@NameChange30 Yes it is termed ‘diagnostic overshadowing’ in the case where trauma and ADHD symptoms overlap, for example. There are distinct clinical differences though, and neuropsychological assessments are so thorough and conducted by suitably qualified professionals (although beware of the charlatans out there! But I’ll save that rant for another thread). The history taking and multi perspective nature of the assessment process is an important aspect of this. I agree with another posters point as well, about people being quick to attribute behaviours to ‘trauma’ and being dismissive of the possibility of neurodivergence. Of course this is massively unhelpful.

It is totally understandable that having a child with ND can put stress on a family; especially having to battle services and systems, it’s utterly exhausting. There should be more support for families.

Thank you for articulating that more clearly than I can.

Also: 'It's a good idea, but we'll have to make some changes before dropping this on everybody - it won't work putting Emily right by the door/radiator/kettle and sink, so how about we put her here and then she's not got to deal with everybody walking behind her to make coffee.'

'Why don't we ask Emily to pick where she would like to sit?'

I will acknowledge one downside to adult diagnosis: grief. I mourned and still mourn the life I could have had if I'd been recognised as autistic sooner and supported, I was and still am angry that I wasn't recognised as such, and I wept and still weep for the little girl who was bullied and was vulnerable through lack of social awareness and so was an easy target for sexual assailants whilst still at primary school.

I can understand adults not wanting to pursue formal diagnosis for themselves because they don't want to face the grief that comes from knowing for sure.

Diagnose the child, you spare the adult that child will become that grief and reap the benefits of proper support from an early age.

I think you misunderstood my post. I was discussing the impact of diagnosis in general not specifically to ASD or any other of the group often referred to as ND. Of course many countries do not limit immigration based on health (costs) but some do and I can assure you that was and as far as I know still is the case in Australia. We are discussing potential positives/negatives of diagnosis.
I am very well aware that autism is not classed as a LD in the uk, and that while a large part of the autistic population do have LD most do not. I mean let’s be frank the whole point of the original dx was we had atypically developing individuals who might appear to have LD but in fact had very different challenges.

And having a diagnosis gives you a sound basis of where to start, but obviously you don't just say ALL autistic kids need x, that would be ridiculous. If you know why they have the need it helps to identify the sort of interventions to try.

I don’t think the diagnosis does lead to better or more focused care and I’m not really sure why people do think that. I think it leads to more stereotype and less observation.

Define "care". A formal diagnosis caused a substantial improvement in how my employer treated me, including assistance obtaining Access For Work support. If that's "care", then yes a diagnosis can help a lot.

I am so sorry that happened to you

I work in private and i have noticed the —elephant in the room— denial at a possible suggestion that their dc is ND. Normally it’s too late. Those that take the advice, help and support, their dc has flourished and gone on to do amazing things.

Haven't rtft, so I'm sure someone else will have said this too, but I had the opposite issue, in that I fought for my dd to be diagnosed but got no support from her teachers. They just saw a very quiet, rigidly rule abiding, highly sensitive child, and made me feel I was a difficult parent. It took until she was 16 to get a diagnosis, which the assessor recognised straight away as soon as I described how she was as a small child. I will forever resent those early teachers who refused to see what was so evident to me, and left her without the support she needed.

I thought we were discussing Parents who refuse to pursue a diagnosis for their children?

The childhood diagnosis makes it easier for the adult that child grows into to obtain reasonable adjustments at university and work. Hence the workplace experience of autistic adults with and without diagnosis is a relevant consideration in this thread.

Everyone has different experiences and gets different support dont they. I wasnt expecting as much support with my DD as I've been getting. I'm actually overwhelmed with how much support has come flooding it for her and me.

School are very very supportive, couldnt fault them. She doesnt have an ECHP yet and she still gets 1 to 1 and gets accommodations made for her

Cahms have set up support for her and myself, I've had 2 meetings this week about DD and she is foinf to have weekly support directly from CAHMs. At the minute she has support from 4 different proffesionals.

She has gone from a little girl who was self harming in school because she was so overwhelmed and was struggling so much, who couldn't describe how she was feeling, telling us she wanted to die

To a somewhat happy little girl who can explain and recognise how shes feeling, who realises she jsnt a weirdo or a freak, she just has a different brain who isnt self harming anymore ( at the minute, I'm wary it might start again if she gets more stress in her life )

It must just depend on the child and what support they need as I have found DD's diagnosis has benefited her immensely. She is a lot happier