Who's read 'Age of Diagnosis' (overdiagnosis in Long Covid, ADHD, Lymes, autism, cancer screening)

@KabukiNoh

I agree with you. I think there tends to be a very dogmatic attitude around ASD, and people very willing to tell you that you are wrong, it’s too complex for you to understand, you shouldn’t be questioning, you’re making no sense, how dare you suggest that etc etc.
For me the criteria is broad and subjective, and I think this can lead to assumptions and generalisations.
My son’s paediatrician drew three circles on a piece of paper for me of areas where she was looking for evidence.
1 - speech and language 2 - social interaction 3 - repetitive behaviours and fixations.
She said there was insufficient evidence for the third area so didn’t diagnose.

For further context to my question I have 2 kids with ADHD though only one on medication - I would consider that a more severe form. One also has autistic traits but not so severe as to meet criteria for a full ASD diagnosis, although we could probably push for this if we thought it would be helpful. So it just makes no sense to me to have such a binary approach and suggest one autistic person cannot be less autistic than another.

Thank you, it’s a good example of how ‘high functioning’ can still have a significant impact. But I don’t think thank precludes us from saying she has less severe autism than those in the group who were non-verbal and still in nappies.

True, but that doesn’t answer my question though.

Actually, I have some sympathy with this viewpoint. We attended an OT workshop with other parents of autistic children, some of which were non verbal and still in nappies at 5. Others were very much like our situation, dc with emotional dysregulation, sensory processing difficulties and a degree of school avoidance due to a host of other unseen issues that cause panic attacks and anxiety.

At her worst, we have been on our knees, but on the whole we definitely feel comparatively 'lucky' that she (mostly) functions day to day and can largely communicate her needs. The biggest issue for us has been deterioration of her mental health as a result of undiagnosed ND and unmet needs in the early days. Once we understood it all better and her mainstream school was supporting her, our lives became easier.

I think, though, that the issue people have with the term 'high functioning' (I've used it too) is that many autistic people can appear high functioning, until they're no longer functioning at all due to shutdown. This is definitely our dd. At her worst, at just 6yo, she lay in bed naked refusing to eat and pulling at her hair because it 'annoyed' her. It took weeks to get her back again after that episode, but to look and speak to her now, you'd never know it.

But then she has a total meltdown at the local park because she's been playing in the water play and has become distressed because she has no change of tshirt or a towel, and hates the feeling of the wet clothes so much that she can no longer think straight. She begins yelling, screaming and hitting. Eventually you manage to get her to the toilets and spend 30 minutes with her under the hand dryer and you remind yourself that this isn't normal for an 8 year old after all. And yes, I should have been more prepared at the park! That's our life - daily considerations and a succession of 'plan Bs' just in case we encounter an episode like this - and we don't always get it right, nor can you plan for every eventuality.

Because diagnosis is complex with various parts to it that over all has to meet a threshold of significant impact to life.

@NeverDropYourMooncup

Thanks - your posts are really good!

Perhaps not strictly off rolling, but I definitely think the school were putting their interests above the needs of the child.
And just from conversations with the school : ‘you know we don’t have assistants here to support SEND children’, ‘we can’t fund this’, your child has a ‘tiny squeaky voice’, ‘he just sits there not taking on instruction’ (this was untrue as he was repeating all his phonics lessons at home) ‘parents don’t normally see evidence of intervention work’, a 6 month (unlawful) delay is ‘normal’ so your son’s provision is not in place, DS being allocated to a young, inexperienced parent helper’s group on a school trip and getting left behind in the toilet…
It’s been pretty awful since he received his EHCP. The school didn’t want to place him, they are defensive and dismissive and see me/DS as a headache.

He is happy, quiet and vulnerable. They get approx £16 000 per year to fund his needs, he sees little of what the school claims they spend the funding on because he is not demanding and can be easily overlooked.

So if this is his future of schooling with an EHCP, I am very, very sceptical about whether a diagnosis or label is working in his favour. Two children have also been excluded from his class (one this year, one last year).

There's a lot of information that you have to provide for an appointment.

Yes, I am aware of the concept of offrolling (and the Admissions Code, plus many, many other pieces of Statutory Guidance and the relevant Laws).

Offrolling doesn't apply to the EHCP consultation period, though - and although there are statutory deadlines for draft EHCPs to be sent to schools, I have seen some of the most obviously inappropriate ones only coming through at the weekend or during school holidays with an 'If we do not receive a response by <day before return>, the school will be named'.

It can also be like trying to access the Dead Sea Scrolls to get sight of the final document as well - at which point (if we ever get it - sometimes we've had to ask the parent if they've received a copy) there are extra things in there that we couldn't provide in a month of Sundays or, in the case of one particular diagnosis, we were informed by the specialist teams of both children that it's actually very dangerous medically for there to be two children with the same condition in the same school (or year group if they are able to be totally separated from the other 6 years, which they weren't) - but the LA still tried to put two into the same cohort and it took way past the usual transition time to get them to accept that potentially killing one or both of the children was a reasonable explanation for not being able to meet one's needs (confirmation that the second wasn't coming only came through on the Friday before the August Bank Holiday).

I’m really struggling to understand various posters’ viewpoint that whilst recognising the huge range of impact that autism has on people’s lives we can’t talk about degrees of severity, say “high-functioning” etc.

I understand that those who I would consider severely autistic (eg non-verbal, completely dependent on others) are likely autistic but with an additional diagnosis of learning disability, which acts as a qualifier. And I appreciate that those who are high functioning (yes I’m using the term) may have severe difficulties in ways that are less obvious.

But why is it so ignorant to dare suggest there are degrees of severity. Why do you feel that autism is such a binary diagnosis - yes or no - when every other medical condition, personality trait, indeed any aspect of humanity can be considered on some kind of scale of severity and this does not seem to cause so much controversy.

I’m not trying to be goady. I just don’t get it. So please explain if you hold the view that vastly differently presenting people have the same autism.

@NeverDropYourMooncup
“I believe that diagnosis is intrinsically valuable because it's a fact, whereas withholding one is a negative as it creates confusion and a lack of clarity. Does a diagnosis of sinusitis secondary to coeliac give clarity instead of putting debilitating headaches down to being female and a parent? Yes, as it means I know to avoid wheat and take a Sudafed before putting an icepack on my face if I feel a twinge above my eye or my cheekbone, rather than take ever stronger painkillers. Does knowing that somebody has Tinnitus and moderate hearing loss with or without ADHD give clarity? Yes, because it means they have a 'good reason' to not want to be moved into an open plan office, rather than them being difficult - there is an authenticated reason why it would be intolerable and affect their work, rather than firing them for poor performance. What people deride as a label can be a shield or a standard.”

I believe that too. And what you’ve described there is diagnosis = positive outcome.

For DS I started the ASD referral and EHCP process because I wholeheartedly believed it would result in a positive outcome for DS.

The turning point for me was refusal of a school place at the time that I was supposed to be buying uniform/DS meeting his new teacher.

Everything had been going in the right direction up until then, and I felt like I’d failed as a parent. I thought DS would be without a school place, when other children would be having their first day in reception.
So now I am extremely sceptical and I question everything.

@NeverDropYourMooncup

Before I applied for a school place, I asked all professionals involved if mainstream was the best setting. All said yes, until I applied and the school SENCO rejected. I believe the school was attempting to off roll.

@NeverDropYourMooncup

https://educationinspection.blog.gov.uk/2019/05/10/what-is-off-rolling-and-how-does-ofsted-look-at-it-on-inspection/

Off-rolling is the practice of removing a pupil from the school roll without using a permanent exclusion, when the removal is primarily in the best interests of the school, rather than the the best interests of the pupil. This includes pressuring a parent to remove their child from the school roll.

You see on here all the time “I have undiagnosed ADHD” - what does that even mean? Surely if it’s not been diagnosed then you can’t be certain you have it.
Often it means that people are in the process of waiting years for an assessment.

These people sometimes go years believing they have ADHD. What happens if they get assessed and they don’t have it? They have to unpick years of thinking about themselves.
What, as opposed to having to unpick decades of thinking they are useless, lazy, clumsy, basically a failed human being? Which is a standard post- diagnosis process for those diagnosed in later life.

I should have said "even 'high functioning' autistic people" there.

Rates of depression, anorexia, self harm and suicide are incredibly high amongst autistic people, so....yep.

I think this ideology especially for things like fibromyalgia is dangerous for people with health conditions. I don’t think people understand how exhausting it is. Maybe they want to use the little energy they have on doing something nice for themselves than working themselves into a grave.
There are things I could do that I don’t after my diagnoses of a condition because I am now aware that doing those things takes up so much of my energy and has such an impact on me that it’s not worth it. So I won’t be seen doing those things any more. I’m sure that applies to a lot of disabilities and conditions and it’s not a mind set but learning working within out of parameters so that we don’t push ourselves too much.
if an autistic person after their diagnosis is consciously aware that going on public transport or going into a shop takes a lot out of them, then they are more likely to avoid going there.
if there is an ideology that we could or should be doing more, that is going to be dangerous for people with these conditions

This!

Most parents of ND kids that I experience have to and are going above and beyond what most parents of NT have to do. Their skills
are amazing - would love to see parents of NT handling severe sensory struggles, Eds, huge MH, difficulties,struggles with emotions, increased vulnerability, repetitive behaviours….. all day long every day on a loop.

Also re EDS another ND kid with it here. Alllll the symptoms including hypermobility, elastic skin,knees popping out of joints with excruciating pain….My dd is so fed up with judgement re “labels” in the media( she has several diagnoses)she won’t pursue a diagnosis. So we live with the fear and pain of dislocation.

The RFK Jr school of medicine seems to be very much at home on MN.🙄

I've experience of the EHCP process from the other side. What happens is when a consultation is opened, the school is sent the proposed EHCP in advance - which means that there is a lot of detail about needs and behaviours they have exhibited in their previous educational setting, along with contact details for that setting. So they can already see if they are likely to be able to meet the existing stated requirements.

Unfortunately, this sometimes means that a school has to say they do not feel they can meet needs - a class size of no more than nine, individual tuition, physical therapy being performed by a TA who is also a qualified physio three times a day, access to a therapy pool, the employment of three members of staff to supervise constantly due to a previous number of occurrences of escape or physical harm being caused to staff or other children, the provision of a lift in an old building that does not have one or the many thousands it would cost to install and maintain one, purchase emergency evacuation equipment, train multiple members of staff in the lifting required in the event of an emergency, that kind of thing.

In my experience, stating that needs cannot be met is not refusal out of malice, it's that the needs as described to them in the draft plan and as described by a previous setting are such that they feel it's not going to be successful and then the child and parent could be potentially stuck either unable to access education or fighting for an Early Review, making it even longer until the child is able to settle into what is best for them. I've also seen the trauma suffered by children who haven't been given the appropriate provision until it's completely broken down despite the school's best efforts because it wasn't the right place for them but the LA refused to accept the school's advice and pressed on with traumatising them to save the LA money.

We are always glad when a consultation is withdrawn because it means the child concerned is getting somewhere that actually meets their needs, rather than the cheapest option the LA tries to foist upon them.

I believe that diagnosis is intrinsically valuable because it's a fact, whereas withholding one is a negative as it creates confusion and a lack of clarity. Does a diagnosis of sinusitis secondary to coeliac give clarity instead of putting debilitating headaches down to being female and a parent? Yes, as it means I know to avoid wheat and take a Sudafed before putting an icepack on my face if I feel a twinge above my eye or my cheekbone, rather than take ever stronger painkillers. Does knowing that somebody has Tinnitus and moderate hearing loss with or without ADHD give clarity? Yes, because it means they have a 'good reason' to not want to be moved into an open plan office, rather than them being difficult - there is an authenticated reason why it would be intolerable and affect their work, rather than firing them for poor performance. What people deride as a label can be a shield or a standard.

No you really aren’t getting it.

It’s not the parents of NT children that are having their parenting questioned.

You really aren’t getting it.
Of course parenting should be put in to question sometimes! Are you saying every single parent ever has always parented acceptably and there is never a need to question how people treat their own kids? That’s crazy!
I question my parenting all the time! Because I am trying to do the best job I can. I don’t always get it right and if I didn’t ever question it, then I would never try to be better at it

EDS does seem to be behind so many of these weird issues. We desperately need the gene identified for type 3 ( hyper mobile) because the gaslighting and minimisation is really something else for many affected.

We've not been diagonsed with EDS - but joint instability and skin fragility are in both problems in DH and my family. It's a weird thing that we just get on with TBH.

I was sat in meeting for ND with DD1 - and we kept saying well yes that an issue but's it's an issue for all of us and in end they had to keep saying well it's not in the general population. I think it often gets underestimated just how how much additional shit get normaliszed.

Same with ridiculous heavy period in my teen and 20s - 10 day heavy periods bleeding though everything - and GP would insit it's normal or go on the pill - and then have no libedo and high anxierty oh you've imaged that as well or occaioanally have an anti depressant. Then when you mention it on here people pipe up periods are normal - well yes but mine weren't or you should have gone to a GP - I did many different one many times over many years. You end up managing - till you can't or in my case till childbirth re-set things.

In my family I think we do more parenting than most "good parents" normally do - I'd actually say that was common with ND kids TBH or most of ones I see - still get blamed though doing not enough or too much.

Nope my children,other ND children. The parenting of parents with ND children should not be put into question any more than those with NT children. Do you query the parenting of parents whose children have more visible disabilities?

You missed the nuance.

Literally nobody has questioned YOUR parenting. You do not need to be offended by that statement.

The poster is saying that, of all children who suffer from behavioural problems, that it is entirely possible that in SOME instances it COULD BE down to bad parenting. That wouldn’t be the same has having ND. At least that’s how I read it.

You have then taken that statement to mean that ND is down to bad parenting. And then got offended. You missed the nuance.

If you can’t see how offensive faux scenarios re bad parenting being the cause instead of ND and comments like below are then I’d suggest you are the one missing the nuance .

“Why is it never a possibility that parental input is at fault? Is it always the child’s diagnosis that is the reason for the difficulties faced?”

My children having autism should not put my parenting in question any more than parents of NT children .