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.

They said it was just a general term for anyone who needs support and it doesn’t mean that they have any actual additional needs.

They were quite dismissive like it was nothing to worry about, some kids just need a bit of help to catch up type thing and so I have never questioned it further than that.

I then spoke to the SENDco at the secondary school but this was right after Covid and lots of the kids had attendance issues and so it probably wasn’t taken that seriously.

He was really nice and spoke to her teachers and they all said she had autistic traits but not sure if she’s autistic (I didn’t know about inattentive ADHD at this point) and they said that her behaviour is always very good but that girls can mask.

He was the one that said he has at least 5 parents a week saying their child is ND and that diagnosis takes years - almost suggesting that I may have been overreacting but that have been in my head.

I think the school’s reaction is important. If you can get a diagnosis on the NHS then okay. A lot of mental health services like CAMHS will no longer assess for autism or ADHD due to the volume of referrals from parents
. You need to have a lot of evidence as to the significance of the impact. I would be very wary of a private diagnostic path

This has been my concern too.

You just have to come on here and a poster says something like their child cried after breaking their arm and you have multiple posters saying she must be ND.
(Exaggeration but it is mentioned on almost every thread).

I have also seen people roll their eyes when they hear about a child being ND and they’re like another one 🙄

If it wasn’t for this surge in everyone needing a label then I think I would have pursued it more but I am concerned that I am subconsciously doing the same thing.

She sounds very much like me. I do all those things that your DD does. I'm late 50s and have been diagnosed with autism and ADHD in the last 3 years.

It's never too late to get a diagnosis. I would strongly urge you to get the process started.

Calling an autism or ADHD diagnosis a 'label' always sounds very dismissive to me. They are both very significant diagnoses. The good thing about getting an ADHD diagnosis is that there is medication that is very effective and has been around for decades (so very tried and tested). And really it is like any other diagnosis that comes with very effective treatment, getting a diagnosis and treatment is a no brainier.

Since going on ADHD meds, my anxiety is now at reasonable levels, I am far more able to get boring things done too. To be honest, the anxiety improvement is so great, it would be worth taking the meds just for this.

The meds have also stopped my impulsive eating. A lot of us ADHDers have problems with out weight because we are constantly seeking out dopamine and gorging on carbs and sugar can feel like it helps. Last week, I decided not to have any meds for a few days . 3 days in, I decide to have a slice of my mum's delicious Homemade Christmas cake, then I had another slice; then I looked at the remainder and thought I may as well tidy it away into my tummy. About half an hour later, I was absolutely shocked at myself - I'd probably just eaten 1500 calories in cake. I decided the no med experiment was ending immediately.

In addition to ADHD and autism, I also have a chronic illness (ME/CFS) which has made me too ill to work. My psychiatrist has many patients who also have this illness and she is comvinced that it is linked to neurodivergence and has also told me that the stress of living with untreated ADHD would have been a factor in me getting ill. So having a diagnosis and treatment is protective of your physical healh. Plus it is known that autism and ADHD are linked to many other signifiant health problems plus also many other types of problems such as gsmbling, crime, drug addiction, poor educatiobal outcomes, over spending and unstable careers. Oh and domestic abuse (which happened to me).

OP, I hope this long list of possible negative outcomes has convinced you to get a diagnosis or diagnoses for your DD. The disadvantage of not having a diagnosis far outweigh any disadvantage of having a diagnosis (and to be honest I have yet to come across a single disadvantage of having these diagnoses.

I have recently started having autistic shutdowns. They are trigerrd by stressful events and a bit like meltdowns except they are quiet and can last for days. When I am shutdown, I can't talk to anyone, can't eat, can't read, can't cook or do anything much apart from lie on my bed, listen to music and wait for it to pass. I had a shut down a few days ago because my GP sent me a message, telling me to book an appointment via a link except there was some kind of technical error and i couldn't book. I phoned the surgey and the receptionist said she couldn't help! Later that same day, I had an appointment witb the surgeey's pharmacist. Sbe said she would ask a colleague to sort it out and call me. Tbey didn't. After that, my shut down started and i was unable to engage with the surgery. By the time I was better, the link had expired: I had an appointment with my psychiatrist that day and told her what had happened. I also told her about my query to the GP. She said I needed an urgent appointment because it is potentially a serious problem and the GP's system did not meet my needs. She wrote to the GP that evening saying I needed an urgent appointment and explaining that the process of trying to get an appointment had caused a shutdown.

People often ask me why I bothered to get diagnoses so late in life because, they say, I have managed up until recently, The point they are missing is that I have spent something like 55 years working 10x harder than everyone else to make it look like iI was managing but I wasn't. I've got a degree but my A-Levels went tits up so I ended up doing a rather unsuitable course. I then started my career and despite working hard and being liked etc, I never once got promoted. So yes on the surface I coped by paddling like crazy and still did not fulfill my potential.

Nobody would ever need to declare autism at work unless they chose to: it’s private medical history.

However, I agree an NHS diagnosis will likely be required for requests for adjustments in workplaces in future.

I would agree it is a personal matter. However, I would not have much confidence in employment law or regulation in this space remaining as it is.

I manage someone at work with an autism diagnosis, one of the strongest members of the team in a lot of areas and due to the diagnosis I can make certain accommodations that allow them to work in a way that gets best results for both them and the organisation. I have another people who I suspect is autistic, no diagnosis that I am I aware of, so I'm limited in how I can support in the same way. I do what I can but it's much more difficult.

@AwfullyGood

I have kept her in a bubble I will admit that.
I have never had a man move in as it’s been so important for me to keep our home very safe for her but it’s been hitting me recently that she’s going to likely struggle going to uni and getting a job which is why I have started this thread.

Its really nice to hear that you are able to support your colleague so well and this definitely makes me want to push for a diagnosis, especially if you’re unable to do the same for your undiagnosed colleague.

This is really helpful thank you!

There are many things that she definitely does not have but then there are things she does have and so it’s good to see how they work it out eg 2 out of the 4 criteria.

This is nonsense. There are plenty of jobs that require a medical, plenty that require you to drive and therefore disclose any medical diagnosis to your employer. There is another thread running at the moment asking this question and it’s almost unanimous that yes you have to disclose.

Sorry but I couldn't disagree with this more, apart possibly the sentiment that private diagnosss are not always trusted. But you can't blame people going for private providers (i did) because when my GP referred me for an NHS autism assessment, the waiting list was 4 years. I didn't even bother witb the NHS for my ADHD diagnosis.

I am, however, very confident in the quality of my providers - my autism assessors also do autism assessments for the National Autistic Society and my ADHD psychiatrist used to the the consultant in charge of adult ADHD for my local NHS mental health trust. She is one of the foremost ADHD psychiatrists in the UK and very well known. Many (or even most?) private diagnoses are perfectly respectable.

I do not think that employers will take a ''more discretionary approach" because tbey would be risking breaking the law if they didn't allow neurodivergent employees reasonable adjustments. Obviously it the law is changed, that js an entirely different matter.

Autism and ADHD are classed as disabiltiies for very good reason. I am what many people would refer to as "high functioning" but i have only been high functioning because I spent the first 55ish years of my life working extremely hard to appear normal. It became a way of life. Now in my late 50s, with a chronic illness, i no longer have the resources to hide my neurodivergent traits. I i regularly have to spend days in bed recovering from autistic shutdowns - inclluding this week. Please read my PP (very close to this one) for more details.

She’s 17 so she can get her own diagnosis if she feels it will help

You make an assumption that what will be taken into account under the law will stay the same. You also assume that people and politicians will always be sympathetic or that they will hold views that support anti discriminatory measures.

That is not correct. It may be one thing to have autistic traits. It may be a considerable disadvantage to have a diagnosis which is not NHS dependent in the future

40 years of thinking and knowing I was a failure at life.

I was diagnosed with adhd at 38 last year, I can't fully explain how helpful it has been. I've researched different ways to do things that I have struggled with, some of them have worked and others haven't. I give myself grace, I know when I need to rest rather than push through to be like everyone else.
It's also helping my son. If she chooses to have kids then it's always helpful to know.
I struggled massively at uni, nearly dropped out 3rd year out of the 4. If I'd had my diagnosis it coukd have really helped me, my self esteem and my anxiety and depression.
Becoming a mum hit me hard, peri menopause is hitting even harder.

It's not always just about school, it's about understanding ourselves. I would encourage her, just as i am my son.

People/politicians aren't tremendously well informed or sympathetic now. We're hardly living in some kind of golden age.

I don't think an under 18 can refer herself and even if she could, she's unlikely to be taken seriously without parents pushing. She's still a school student.

Labels help people make peace with issues they don’t see others as having. It helps people ask for help with issues others might comment on as odd. It helps people access tools that make life that bit easier. It’s never too late x

I did point out that the situation would change if the law changes. I didn’t make any other assumptions about what other people and politicians think. Although if our lawmakers were to decide that neurodivergence wasn’t a disability, Britain would be out of step with the rest of the industrialised world who, like
us, have protections enshrined in disability laws.

Do you not consider autism and ADHD to be disabilities? If not, why not?

And did you read my PP about how I ended up in bed for a few days with autistic shutdown because the GP’s appointment booking system malfunctioned and the receptionist refused to help me?

No. Take a good look at who is dominating the political agenda in this country and decide it will get better. I don’t think so

Mine had an ADHD assessment and the result was inconclusive. We were told this didn’t happen very often. We do have other diagnoses. We will revisit again in the future.

I'm not disagreeing with that. There is a swing to the right (as there is across Europe). I don't think that inevitably means things will get worse and worse for the neurodiverse.

You would have surely noticed any need for help long before this. It's soooooo evident when children are ND from an early age, especially from schools along with own observations.

Some can change and develop new traits, think pressure of social media to question if you're 'normal'.

I suppose what I see is that of the legal rights that support anti discrimination are actively opposed by right wing parties and some of the comments from said parties have been antagonistic. They are all about cutting regulation and costs of business @Needlenardlenoo

I mean - lots of people can't study well.

I can't study well, it meant I could not go farther in the field I wanted because it had heavy study and memorisation requirements. IN the end I went in a direction that was related and included many of the things I loved about that field.

The fact is the majority of the population probably isn't cut out for heavy academics and never has been.

It's really normal for kids and teens to be anxious. It's really normal for teens to be an emotional mess. The fact that she is growing out of it is also an indication that she's learning to manage her emotions and feelings, which is, again, a normal progression.

Op, asking on here is not advisable. You will attract those who need, want a label. Not a bad thing but not for your daughter.

Mine has traits. Food, sensory, routine. However she will not need support in later life, only that which she gives herself to cope. I do worry she’ll be trapped in a shop one day with no one to open the door but she’ll figure it!