To feel guilty for not having acted sooner (SN-related)

[ReanimatedSGB]

DS got himself into a spot of bother at school: luckily they are being very sensible about it. However, I have been gently-but-firmly encouraged to get him officially diagnosed with... whatever it is. Possibly ASD, possibly dyspraxia.
We've known for several years (he is 13 now) that he was not quite like his classmates. He's always been quirky, and most of his close friends throughout school have been on the spectrum, but I was never very keen on having him labelled. I think I might have been wrong about that.

I was very worried about DS getting a diagnosis as I did not want him to be labelled. The Ed Psych said to me gently; 'He will be labelled anyway'. In other words, me having my head in the sand would not prevent how others would view him. As it happens,the 'labelling' has been incredibly empowering. It has meant that his teachers have been prepared to take more time and care with him and to help him to adjust to situations he finds difficult. It has meant that I have joined the National Autistic Society and learned about legislation changes / disability rights etc. I have come to see the diagnosis as empowering really- it has triggered us pursuing information and opportunities that we may not have done otherwise, and it means that others around DS have been prepared to be a little more patient than they might otherwise have been.

It's scary at first, and the emotions you feel as a parent; - have i caused this? What happens to him? Will he have friends, a life? They all whirl around in your mind. But if you know, then you can move forwards strongly.

Why are the school so keen to have him labelled?

And OP good luck with it all.

I don’t mean that in a ‘ you’ll need it’ way - but just wish you the best with this.

one of my dearest friends is an expert in autism and worked hard post-doctorate to change the assessment environment of ASD and told me to absolutely not get her labelled if I can help it at all. She is a foremost expert

Any expert in autism would never have used the term 'labelled'

A diagnosis is just that and it's carried out by a medical professional or a team of medical professionals. The tests that are used are specifically designed to screen for presentations of autism, so how could anyone who allegedly works in that field do anything but bristle at the term 'label' which is immediately demeaning and derogatory to their professional standards.

Perhaps you'd be kind enough to pass this on to your friend
the-art-of-autism.com/understanding-the-spectrum-a-comic-strip-explanation/

No point in feeling guilty about it now. If he's gone this far without being told to get a diagnosis it probably wouldn't have been that useful to him. I know a couple of people on the spectrum (both asbergers) whose parents kept their diagnosis from them because they had the same fear of them being 'labelled', you are not the only one. They are both doing just great. Seeing as problems have now arisen go and get him tested. The worst that can happen is that you are told that the school was wrong and he's just quirky (which will probably help to aliveiate your feelings of guilt) or it may actually allow him to get the kind of help that he needs resulting in a complete resolution of his problems at school that would be great!

I know how you feel, I worry that not pursuing diagnosis for ds1 is the wrong thing. I'm a few years behind you, he's only 7, and is coping okay. I'm quite sure of his autisticness as I am autistic myself (and I'd bet paper money that DH is too!)

Don't feel guilty. You have done the best you can based on how he was at the time, and I'm sure you'll continue to do so as circumstances change

If DS3 had been my first child, I probably wouldn't have asked for a referral. He was dx with ASD earlier this year. He is 4, in mainstream primary without needing any extra support, and his class teacher has questioned his diagnosis on several occasions since he started in September. It's only because of DS1 who has ASD that I did ask. DS1's needs have always been more apparent and more severe in presentation and even then I wavered a bit.

But because I've seen what happens when DS1 crashes (e.g. a non-understanding class teacher/sensory issues peaking/puberty etc), I had no doubts that having an ASD assessment was the right thing to do. Even then I was a bit surprised they gave a formal diagnosis as his difficulties are usually quite subtle in how they present.

Horses, I expect the school are keen for him to be diagnosed not labelled. And probably so they know how to support him?

It’s so bloody annoying when people lump ASD and ADHD with the word label. Try doing that with any other medical condition.

My nearly 10 year old DS1 is currently undergoing assessment for ADD with the support of his school. He has a genetic condition and was also diagnosed with dyspraxia a couple of years ago. As someone pointed out earlier, he is labelled at school as being a bit odd.
He doesn’t like being different but his differences are apparent whether he has a diagnosis or not.
I want my son to achieve his potential and I know a diagnosis will help him do this.

Hungry, I'm sorry, I didn't mean to cause any offence by asking, I was just wondering.

Well I have phoned the GP and been advised to phone back and actually speak to a doctor regarding a referral, which I should manage tomorrow (I phoned about 6 times this afternoon but couldn't get through.)We will see what happens. DS is reasonably calm about the whole business now; accepts that he did something wrong and understands why it was wrong, and also that maybe we need to make a few changes in the way we interact with the world.

Wishing the best for you and DS

It’s not a label - it’s a medical diagnosis.

And best of luck moving forward.

My 11 year old is on the waiting list for assessment and I feel bad that I didn’t spot it sooner, I’m involved with a charity that supports parents of children with additional needs and believe me it’s very common to feel guilty

I realized last year that I have a lot of traits so got a private assessment for myself (a lot cheaper than a child’s one, and unfortunately only a Camhs one or a very expensive private one is recognized by schools) and I’m 39. Just knowing has made a massive difference to me and I wish I’d know sooner. I’ve struggled for years and those struggles won’t just go away, but I understand them and can try and work around them.

The thing that’s important is what you do now, and you are doing the right things, you can’t change the past.

@ConciseandNice

If your post is true, your friend is an idiot who is doing a massive disservice to ASD support and acceptance.

This bullshit about not labelling a kid is so insulting. If a child has additional needs they deserve the respect of being given a formal diagnosis so they have leverage and rights to support. Your friend seems to be encouraging people to look at a diagnosis as a shameful thing, a negative. A diagnosis does not change a child but it may make the difference between exclusion and progress.

As for the labelling...you can avoid official labels if you want (and you are an idiot) but your child will ALREADY be labelled.
Bad. Naughty. Weird. Strange. Horrendous. Beast. Freak. Thick. Stupid. Horrible. etc etc

A few of those labels had been firmly attached to my kid. When I fought and succeeded getting him diagnosed the SENCO was ebullient and greeted me with “I hear you have good news!” I was a little taken aback and said I didn’t think it was good news. She said it was very good news as we now had our big stick we could hold over people. We now had legal right to challenge and insist on support.

My son and I were discussing a classmate of his sometime later. This kid had painfully obvious ASD but the parents refused to acknowledge it despite the kid falling apart at Home and school.

My child said to me, (the best thing he ever said)
“he needs you as a Mum. I am so happy you told me why I am different.. I used to think I was stupid and bad. Now I know I am good and clever.”

I am disgusted by your friend’s ignorance. I hope she changes career soon.

My son was labelled.

"Naughty", "awkward", "lazy."

A year later he was diagnosed with ASD, which was infinitely preferable and has given us the clout to get the right support and provision for him.

I was labelled thick, then lazy then at 12 dyslexic. That label changed my life, gave me confidence and understanding, along with the ability for both myself and my parents to push for support that got me all the way to uni. Don't be scared of labels, they can be live changing if they are the right ones. Decades on I come across parents worried about their DC being labeled dyslexic and I always say it is a positive that will help keep doors open for their DC and won't shut any that wouldn't be closed anyway due to the condition.

ReanimatedSGB please don't beat yourself up about the past but please address it now.

I personally feel a label is useful if it is accurate and a disaster if it is not! So labeling the sugar as salt or vice versa would be a pain! But labeling something toxic wrongly could be disastrous!

I know my dd's school did not want her to be 'labelled' as dyslexic, but she is dyslexic and I felt she never really got the help she needed. It is only now, at secondary school, where her dyslexia is being factored into things that she is getting the help she needs.

We are pretty sure our dd is not neurotical but we just don't know exactly what else, aside from dyslexia, is going on. We are seeking help and it is tough. But I think presenting as neurotypical when you are not, trying to act a certain way to fit in, can be very stressful and hard for anyone, especially a teen. There may be times when it may be possible to totally fit in, but I think it is easier if one understands oneself.

Your son has chosen his friends who he feels comfortable with "...most of his close friends throughout school have been on the spectrum..." so in some ways he doesn't have to alter himself to fit in with them. Getting further help will just allow him to have access to better choices, possible support (not sure how much is out there) and maybe answers for him and you about why some things are harder for him than others.

PS I don't personally have an issue with the term 'labelled'. It may be a medical diagnosis but 'labelled' describes the kind of fear around having a child with 'an issue'. I don't think it is the terminology rather the thinking around having something confirmed.

I found the word ‘label’ a good warning signal actually.

When hpc’s started talking to me about labels, I now realise it was because the diagnosis a couple of them were trying to slap on was a wrong diagnosis. It didn’t fit and it wasn’t helpful, as it didn’t actually reflect the reality of life and self.

And then ‘it’s just a label’ from the health care professionals pushing it. Other hcps trying to make the best of a label they also didn’t feel was right, said things like ‘I’m not sure how helpful some of these labels are’, or ‘never mind it’s just a label at the end of the day’ etc.

I also expressed my concerns by saying that this label didn’t reflect the symptoms and struggles in everyday life. I didn’t recognise ‘the label’, and felt deeply uncomfortable about being labelled.

As soon as I found the diagnosis, the word label was suddenly nowhere to be heard, as it became so much more than just a label.

It was a helpful and insightful diagnosis which added value and helped get the right kind of help. It aided understanding. Was freeing because things finally made sense and the guilt of not quite fitting went.

So, I’d not beat myself about using the word label, but when you hear it, listen closer, as it’s trying to tell you something that you need to hear...

Good luck (& please don’t feel guilty! What you do now is the important thing. Not going back in time and judging yourself as if you have the information and understanding you have now, but didn’t then. Now isn’t then and you can’t jusge yourself so unfairly...

That’s like King Harold’s mum feeling terrible she didn’t make him wear some eye glasses that morning in 1066, because she should have known that horrible King William would be messing around with arrows. Obviously all Harold’s mummy’s fault for not dressing him better that morning!

Well that is interesting.

My experience seems to be people not wanting a 'label' but getting to the point of just wanting to know what is going on. I think we all invest our own reading in a name/word to some extent.