To go for a diagnosis for my child or not?

[Toornotto]

I am prepared to get flamed for this and will try and make it as short as possible.

Since my child has been little I have had some people question (including myself) whether she may be autistic or ADHD.

I sometimes hate labels and think way too many times they’re thrown at kids just because they don’t fit into a box and it can be more harmful than helpful in some cases.

My DD is an absolute angel and I could not wish for a better child, which is probably why I have never felt the need to diagnose her.
But I struggle with guilt of whether I have made her life more difficult.

She is 17 now and so I am wondering if I have left it too late.

Some examples of her traits:
Very sensitive to certain textures - can’t wear certain clothes.
Very sensitive hearing - can hear sounds that I can’t which can be difficult for her.
Suffered with anxiety.
Used to be hyper - almost uncontrollably so but now is almost the opposite.
Struggles with changes - has regularly led to meltdowns, crying and self harming.
Can be impulsive and sensitive.
Loses everything.
Accidentally breaks things.
Disorganised and ‘away with the fairies’
Has never slept a full night.
Has never been to a hairdressers as can’t cope.
And more.

But she does not do:
Hand flapping, stimming, intense focus on interests etc which are regularly seen in autistic individuals.
She also doesn’t interrupt people talking or has difficulty waiting her turn as seen in ADHD individuals.

Inattentive ADHD sounds very similar but that doesn’t account for the struggles with change and sensory difficulties.
It is also odd because how can you go from being so hyper (to the point several people have commented saying she’s ADHD) to late primary school and being the opposite to not being hyper.

AIBU?
YABU - to not get a diagnosis. Go and get one.
YANBU - do not go and get a diagnosis. She does not have traits that fully align with any ND.

The thing is many ASD traits are also pretty normal in the population. There are people on MN who will tell you your child must have it if they even have a few things on the list which are quite common in the general population. And that you are a neglectful parent if you don't.

They also seem to think people can't come to an understanding of who they are without a host of diagnostic labels.

I think you are very naive if you think it isn't going to change. It already is changing - employers are starting to distrust degrees and school qualifications and look at doing their own testing.

You have to remember that even now, employers do not need to accommodate if it affects not only the ability to do the job, but also the workplace or business indirectly, in a significant way. Those are not objective measures either, they very much depend on perception, and that is the perception of the employer.

Employers are extremely likely to begin challenging these kinds of diagnoses if they been having more effect which they are already are, as they are being more and more presented with demands for accommodation.

But what is potentially actually worse is that they begin to see employees like that as a risk if they can't get rid of them. The only way to solve that problem is to stop hiring those candidates.

It's also very possible that the laws and regulations around this could change, in fact I think it's likely that we will see some kinds of changes and including differentiating differernt kinds of disability.

One possibility could be a responsibility to disclose more medical diagnoses prior to hiring, much like insurers require. That's something that's been resisted in the past but I could easily see a greater push to it when taking on an employee potentially means taking on someone whose ability to do the job will be limited, and being stuck with that person.

I didn't vote OP as my DS1 is very very similar to your DD in almost every way. I think he may be autistic too. He does have an ADHD diagnosis but it's not made any difference in real life to him. He's currently out of work and very depressed. I'm not sure what difference the diagnosis will make to your DD. All it's done for DS is make him feel more like a victim, can't do this or that because... But, I suppose it may help him get better treatment for his mental health if I can get him to go to a doctor.

3 year wait or 3k to go private
should have started 3 years ago
but start now and she will know by the time she starts work it’s important to know so she can be supported in The work place

Yes it was evident from birth but it was never a problem and so I never thought to diagnoses it.
She is just her.

E.g.
I spoke to the health visitor about her not sleeping but she was healthy and content so no concerns.

She had 3 mini trampolines at home as she needed to get her energy out.

I had a food diary as some foods would make her almost unmanageable.

I took her to the gp about 5/6 to say she doesn’t sleep and he just said about medication.

People used to joke she has adhd.

Some people would say it was just her race.

Primary school put her as having LD.

The hyperness disappeared but school would say that she was a daydreamer and she sit in the corner and sing to herself.

Then secondary school picked up that she needed a bit of extra support but then Covid hit and then many of the other kids were also struggling.

Yes, parents will automatically and rightly so respond to this kids as appropriate. My point is that in doing so, often subconsciously, or due to their divergence, they won’t realise how different life outside is for their kids, and are often left wondered if there’s any point in getting a diagnosis.

Please don’t call me naive.

i’m not a lawyer but I’m pretty sure any employers using perception rather that objective factors to refuse requests for reasonable adjustments would be behaving unlawfully…. Unless the law is changed. So I’m guessing most businesses that refused to implement an adjustment costing thousands for one person would be seen as behaving reasonably, as would adjustment requests that would result in an employee not being able to do large parts of their job.

I used to have an adjustment when I worked as a lifeguard. There was a kids pool game session that lasted half an hour and was twice a week. I found the noise from the equipment used in that session painful, so I never had to supervise that. If I was accidentally put on the rota to lifeguard that, all I had to do was swap that job with another lifeguard. That is an example of a totally reasonable adjsutment. I was still doing my job and lifeguarding for the same amount of time, just not that session.

Your comment about employers challenging diagnoses, would again, I would imagine be unlawful. My understanding is that employers are allowed to request occupational health assessments but they can’t just argue that the person’s diagnosis is wrong because it’s too inconvenient,

i am certain is is unlawful to refuse to hire someone because they need adjustments. Although of course, the employer could make up a lawful reason for not hiring.

There are employers out there who actively seek out neurodivergent employees because in addition to having difficulties that other people don’t have, we also have skills that others tend not to have. For example, DC2 would be an amazing detective - their ability to recognize faces that they have seen once briefly many years ago is staggering. They also have a truly impressive ability to judge character. There was a slot on a TV programme I saw about how GCHQ prefers to employ dyslexic people due to their superior pattern matching skills.

It would be a radical change if the law changes to allow employers to ask people about tbeir disabilities before hiring them. I would put that in the same category as allowing employers to ask young women if they planning to have a baby. (That used to happen to my mum’s generation routinely).

i think your comment about the laws being likely to change to reflect different types of disability sounds unlikely and impractical too. Somebody would have to go through millions of possible diagnoses and keep checking for newly discovered diagnoses to decide which ones were worthy and which ones weren’t. I think the way it is currently done is similar to the way PIP (disability benefit) works in that they consider how your condition impacts you, not so much the diagnosis.

Howvever, we live in crazy world and if we (God forbid) get a Trump-Style prime minister cum head of state who has enough power to do whatever they want, then who knows!

Well I didn't realize DC2 was neurodivergent until they went to university. It is a common to not spot it until this point. Some of us are masters of hiding our traits - especially intelligent girls and women.

I was discussing this very point with a friend of mine yesterday. Her DS fell apart at uni and was sent for an autism diagnosis. His mum asked him how he managed at school (he got 3xAstar in his A Levels) and he started reeling all the help he got at school. Sbe had no jdea.

Also, ND children usually have ND parents and grandparents. So their behaviour seems normal to their families.

Do these traits impact her functioning. Does she need additional support that only a diagnosis would give. If yes to both of these look into assmement if no don't. Not everyone with traits needs an assesment and the speed with which people jump to assessment is partly why there has been such a huge jump in referrals meaning people who actually need support can't get it.

I understand they can mask it and seem to function, so it's sometimes only later in life it's recognised. When your DC was at school there wasn't the same awareness.

I was just talking from my own experience. DC was very ND and it was evident from a very early age, having to change schools until we found a specialised one, which they have thrived in, albeit ongoing behaviours at home.

They will need support for a very long time, which we are here to give. Xxx

Just so you know the waiting list is 3 years long in most areas. My dd is on it! It depends a bit on how happy she is I would say and how well she’s coping with work / study or whatever she’s doing. I have applied for diagnosis bc EVERY setting my 8yo was in was difficult for her and every adult who met her mentioned autism. I need answers.

At that age though and having coped all the through the education system thus far I’m not sure if it would help much or not really. If the adult waiting list is shorter it might make more sense to wait until she turns 18!

We're looking into getting our DD an ASD assessment. She's already been diagnosed with ADHD as that was more obvious. Her school thinks possibly ASD. I'm not sure, because when I look at screening questionnaires, she doesn't tick as enough boxes. But some of that is probably because we've accidentally built an environment that works for her. For example, we never suddenly say it's time to leave somewhere, we always give a 5 minute warning. I've had a friend ask why we do that, and we started when our oldest was little as it doesn't seem reasonable to spring things on anyone.

The other issue is that ADHD and ASD can pull in opposite directions. So the novelty seeking nature of ADHD resists the repetitive ASD behaviours. So I'm not sure if there's enough of things like repetitive behaviour for my DD to qualify.

You only get a diagnosis if your traits have been causing you significant problems since early-ish childhood and if you have enough of them.

Clinicians know how to tell the difference between normal variations between people and neurodivergence.

For example, everyone sometime has trouble with concentrating especially if they had a bad night’s sleep and are faced with a boring task. But on most days they will bell able to force themselves focus because they need to get things done. Somebody with untreated ADHD may find their mind wanders nearly all the time, except occasionally they hyperfocus so much that they forget to eat. They want to focus and they end up wasting loads of money because they forgot to return clothes that don’t fit, forget to cancel memberships etc.

it’s not altogether surprising because scientists have compared ADHD brains to neurotypical brains and found that there are differences in structure, connectivity and neurotransmitter regulation.

There's virtually no support.

I'm having regular autistic shutdowns every time something a bit stressful happens or I experience sensory overload.

For example, there was a day when I had my daughter crying on the phone to me in the morning and in the afternoon my mum's GP phoned to say they had sent her to A&E (they sent her home late that evening because there was nothing wrong with her). The stress of this caused an autistic shutdown in me. All I could do was lie on my bed and listen to music, i couldn't cook, talk to people or eat much. This lasted a week. It keeps happening. It never used to.

I'm having to pay a private psychiatrist to help me. I've no idea where else I can get support for this. My GP very apologetically told me there was nobody she could refer me to, not even a charity.

It’s so annoying the “not wanting to put her in a box thing”. If she is, and she sounds like she might be, diagnosis is a tool that will help her navigate life forever. You don’t deal with life struggles in the same way if you’re ND than NT people do - it’s just different, and it needs different approaches.
also, please have a look at the stats on depression on non diagnosed autistic women

You don't refer for a diagnosis, you refer for an assessment. Which may or may not lead to a diagnosis. Or may suggest other diagnoses are more likely - learning difficulties, language problems etc.

What does your daughter want OP? Do her difficulties make it hard for her to do daily things, manage education, be independant? At 17, it's really her choice now.

I think that the easiest way to understand it is in the context of physical diagnosis.

Imagine if you had a leg which was sore, you couldn’t weight bear but it wasn’t swollen. You would go to get it checked if it was broken even though it only met 2 out of 3 diagnosis criteria. Because possibly it’s not broken, or possibly it’s broken but not swollen.

Similarly, possibly your daughter had stopped being hyper because she doesn’t have adhd. Or possibly she has adhd but has internalised the hyper so her brain is racing instead of her body. Without seeing a doctor you can’t know.

My younger DC has an adhd diagnosis, alongside quite a few autism traits. I don’t feel that he has been labelled and diagnosis has been crucial for us in helping him manage his symptoms. It has also enabled us to choose suitable therapy for him to engage with which has then in turn been transformational.

I compare him with my sister who has similar autism traits but no diagnosis and now, in adulthood, struggles to regulate her emotions, is frequently overwhelmed, finds things very daunting, has a huge amount of unmedicated anxiety. I’d love her to try some of the occupational therapy which we have done for my ds but it’s hard to think about that later in life.

This poor girl is approaching adulthood, barely able to attend college or exist in the outside world. What sort of life is facing her?

In answer to your question, say you don’t pursue a diagnosis and possibly medication… you genuinely think your daughter is heading for a happy fulfilling independent life?

It sounds like getting her assessed would be a really good idea.

@Toornotto you are doing your daughter a great disservice. ‘I’ve always been able to manage her fine’. It’s not about you, she obviously can’t manage herself fine. She needs to understands her struggles, what they are and how to help herself. a diagnosis isn’t a heavy weight to carry around with you for the rest of your life, it’s a key that opens a door to a place where you feel validated, and where you can put your struggles in context and start to address them.

And there are no things as ‘typical autistic traits’.

Firstly it's not a label, it's a diagnosis. I hate it when people call it a label. A diagnosis will help her throughout her adult years. You shouldn't have left it so long.

Yes, behaviours seen in autism are seen in non-autistic people. The point is an autistic person has more than the the odd trait and their lives are significantly impacted by their autism. Obviously no one can diagnose on an internet forum (or in real life unless they're trained to) but there's no reason why those of us with experience can't say a description of someone's behaviour might warrant consideration of an assessment.

And again, as a late diagnosed woman, I absolutely did need my diagnosis to understand myself properly. You don't spend 40 years trying to 'fix' all the things that you perceive are 'wrong' with you and constantly failing to do so without that having an impact. Now I understand why I find some things more difficult than other people and act accordingly, rather than trying to change who I am to fit in, for example.

And with a primary aged autistic daughter who used to say she felt like the 'odd one out', but could never articulate why, her diagnosis has helped no end.

Both of my girls have ADHD. One has really bad sensory problems and doesn't cope with change to routine well. This is not only related to ASD as a lot of people seem to think. My eldest was diagnosed at 6 but when she was a teen, I took her regularly to the adolescent adhd clinic in my area. The doctor there said that she would become less hyper with age, almost the opposite of what she was when she was young. I remember laughing at this as the thought of it seemed absurd, but it's definitely happened.

She also said that girls with adhd in early adulthood are more prone to self esteem issues, self harm and low mood etc.

She takes medication for sleeping still (she's 21 now). They have helped although you can get melatonin online these days anyway, without a diagnosis.

What sort of help did he get at school? Interested in what helped @dizzydizzydizzy.

I also think these conditions can become more obvious as a child gets older. And as a parent it helps it you have more than one child (for developmental comparison reasons) so it might take longer to notice a developmental delay or difference if a child is the eldest or an only child. That’s why teachers can spot it more easily, they know what is typical. The problem is they often don’t say and wait for parents to come to them. This has been my experience at least.

We were told by an educational psychologist who was assessing DS’s learning that it would be a good idea to pursue an autism assessment as people make their own labels anyway and autistic is far better than being thought odd or weird! I was a bit shocked by that at the time, but as he’s grown it’s become very obvious how different he is…he’s absolutely brilliant btw, and very loved but there are lots of issues.

OP…regarding your DD’s learning, it is very common for ND people to have ‘spiky’ profiles, so for example DS scored in the 95th percentile in some areas and in the 5th in others when assessed by the ed psych. Processing speed and working memory are often issues in ND people. DS needs a little extra time, one instruction at at time and so on, but is exceptionally bright in other ways. It varies depending on the person of course.

i would also go for a diagnosis but it’s up to your DD.

I was just chatting to my young adult DC about this - they are ND but haven’t yet pursued a full diagnosis (got a working diagnosis for DSA at uni).

They brought up that when they were 11 (so 12 years ago) we both thought someone who had autism would be non-verbal or have severe learning difficulties, not have friends etc, but that is def not the case (they did struggle w friends at school but always had a couple). Weirdly enough I saw more traits in my other DC as a child but as they were so popular in nursery and infants I thought they couldn’t be on the spectrum. I then worked in an environment with autistic children and that cemented my view that DC couldn’t be as these kids had so many difficulties - couldn’t be in mainstream school. DC are very bright - had no learning issues apart from struggling w concentration.

Both have moderate to severe anxiety (diagnosed) probably because they’ve masked/struggled all their lives. Now they’re adults it’s up to them to go through the process of diagnosis.

Your DD may benefit from a diagnosis if she intends to go to uni/apprenticeship etc. as accommodations can be put in place.