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.

A diagnosis can be really helpful in accessing the help your DS needs - it's great you've recognised that now, don't beat yourself up about the past, just focus on helping him in the here and now.

This about your kid getting the support and accommodations at school he needs. Have the school suggested having him assessed by ed psych?

Sounds like it yes.

Why are you making it about you and how you feel?

Channel your guilt into being super-pro active NOW and get him assessed.

You put labels on luggage.

You ask for medical diagnoses for kids who are not coping because without diagnoses it's unlikely that schools or colleges and unis will fund the interventions and help your son needs.

He's 13, you've ignored his needs for long enough and now something's happened where you have to face reality. Time to wake up and get him the help he needs. It's about him and helping him. It's not about you not wanting him to be different. It's not about you whining about feeling guilty.

Help him.
First ask for a diagnosis.
Second liaise with school and make sure they implement strategies to help him.
Third help him at home.

He has generally coped well, and been happy. He didn't want to be labelled, either. At primary school, they didn't see it as a top priority, and there was always some doubt about whether some of his behaviour was inherent and some of it was influenced by his closest friends (all of whom are autistic).

In between doing the things blanklook suggests, it might be worth you reflecting a little on why you felt like that. If your son was partially sighted, or hear properly or walked with a limp, would you have resisted "a label" for him? Probably not. So what makes this different?

13 is a difficult age to receive a diagnosis. Your son will be looking to you and his dad first and foremost to see what this may mean for him. If (and I mean this kindly so sorry if it sounds otherwise) you are quite negative about asd then this might well rub off on him.

Children lack the maturity and life experience to decide whether they should be assessed for sen or medical conditions. As parents that's our job. It's a shame if he has missed out on support because you did not want him to be 'labelled'.
Yanbu to feel bad about this.

Harsh replies.

OP

Op, I suggest you ask for this to be moved to the SN boards. Or repost there.
Its not always as black and white as others suggest. Assessment and diagnosis are not always magical miracles.

Honestly as long as he is happy in himself and progressing I wouldn't fret too much. If not, go and see your GP. Write down your concerns (get school to write down theirs also) then ask for assessment.
I'm unsure what area you are but where I live assessment for Asd currently has a 2y+ waiting list.

Don't listen to the holier than thou pricks on this board. They haven't walked a mile in your shoes. They've idea.

Fatty it is exactly because I walked in these shoes for 8 years that I posted.

I don't, actually, have a bad attitude towards ASD. As I said, DS has several friends with diagnoses of ASD, autism and ADHD etc. I also have several adult friends with ASD.
I didn't think DS quite fit the criteria: he always seemed more 'quirky' than anything else, and has always been happy and doing well at school.

barb
I wasn't referring to your reply

I get it OP - my middle child was always in a world of her own ...until she was found - aged 6 - to be deaf in one ear and have partial hearing loss in the other (due to glue ear) - I hadn't realised and felt awful

we humans make mistakes and misjudgements all the time - now maybe he can get more support etc - but don't look back look forward

Ok, apologies then

Wow 2014newme, are you always this charming?

OP, I know exactly how you feel, my dc was diagnosed at 14 with ASD. In primary school it's a lot easier to mask, in secondary school where more is demanded of them it becomes a lot harder.
Ignore the disgusting person on this thread, you are doing your best as a parent. Feel free to PM me if you like.

My daughter is quirky and it's been mentioned to get an assessment (she is 10), however 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. I trust her. Don't feel bad about not getting a statement for your son. If he can leave school just quirky, then statistically speaking he'll still find it easier in college/university than otherwise. Labels should be reserved for those who need them because they need lots of extra help.

I'm sorry concise but that's absolute rubbish. A child diagnosed with autism will have that diagnosis on their school records. It need not follow them either to university or be revealed to future employers if they do not want it to. If, however, the do chose to disclose it, then they will be protected by the Disability Discrimination Act and - in the case of university at least - support services will be open to them.

That's really not true, Conciseandnice, take it from someone who's been there. My dc has had concessions at public exams (additional time/use of laptop) and will be eligible for extra help at University. Beside that, no extra help has been required or requested and I've had no issues about a "label". Without those specific adjustments, however, I doubt my dc would have done well in exams and we'd have a real problem on our hands.

Firstly, a big hug for you OP. If the school are advising you to have your child assessed then it's because they feel that he would benefit from this. If they had suggested that he was hard of hearing / needed his eyes checked etc would you have the same misgivings about making an appointment and potentially making his life a little easier? It's never easy accepting that your child is a little different or may need extra support but ultimately it's not about us as parents, it's about doing the right thing for our kids. If you read accounts by adults diagnosed with various disorders in adulthood you'll generally find a consensus of wishing they'd been diagnosed sooner.

ConciseandNice - I'm not sure that a diagnosis should be referred to as a 'label' as that implies that it is something to be ashamed of. My child has ADHD and I'm very glad that we had him diagnosed as now we understand him better and can give him the proper help and support that he needs and make sure that he is happy and makes full use of his potential. If I suspected that he had diabetes, asthma or any other condition I wouldn't hesitate to seek a proper diagnosis and I see no reason why a mental health condition would be any different.

A child who's parent's choose not to seek a formal diagnosis will still have the condition - the difference is that they will have to deal with the condition by themselves.

OP don't feel bad. Of course you feel sad and guilty you're the Mum and that's what we do, but if his quirkiness wasn't a problem before then it wasn't, and now that it is becoming a problem you're getting help for him. You're doing a great job for him

If he can leave school just quirky, then statistically speaking he'll still find it easier in college/university than otherwise.

Er no. I am not aware of any statistics that bear this out. And from personal experience as an academic personal tutor at a university I can assure you that's very often not how it works out in reality. The students who come in with diagnoses usually know what they need (the disability support officers and if necessary academic tutors discuss it with them!) and they get support right from the start. Quite often they don't need much and very often they fly through university, but if they do need help they know where to go and we're ready and prepared to give it.

The students who go through the worst struggle and emotional agony are the ones who would have qualifed for a diagnosis but just about coped in school and flew under the radar and they come in with apparently no extra needs and nothing in place or prepared for them. The problem could be academic or social or life skills or all of them but it can be months before students realise they are failing to cope with university life and look for help, and very often by then they are desperately miserable and lonely and feeling like failures, they have often blown coursework or exams, and it can be longer still before the investigations and diagnostic processes get going and all the help they need can be put in place. Really if you are very sure your child would get a diagnosis then the sooner they get it the better. Don't leave it til university.

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.

Your friend's attitude and opinion is very unusual among experts.

The Disability Discrimination Act has been repealed. It is the Equality Act 2010 that covers this.

Perhaps a diagnosis wasn’t right for him previously. I’m not sure what’s happened today or recently but you are now being advised- nicely- that a diagnosis may now be the right path for your son.
Things change and we as parents have to make the best choices given the information we have at that time. The information has changed now for you. Surely that means you don’t need to beat yourself up but instead just consider what is best now to move forward and enable your son to be as supported and understood by others including work, college etc in the future.

"If he can leave school just quirky, then statistically speaking he'll still find it easier in college/university than otherwise."

Nonsense. My dd took a physical and demanding job without revealing her diagnosis (physical & MH condition) because she made the call that at this particular point it was not relevant. There was nowhere her bosses could have found out if she didn't tell them: it just doesn't work like that. Your boss does not have access to your medical record.

She has now decided to reveal her diagnosis to the HE institution she is in, as she feels it is relevant. Again, entirely her call.

As another academic, I absolutely agree with Academic. If students choose to access support, we are very happy to offer it. If they do not so choose, then we don't sit around sharing details about their SN or neurotypicality or anything else just for the fun of it. And if they don't choose to disclose in the first place, then we have no other way of finding out. But if they don't tell us we can't help. And if they only find out halfway through the course, it may be too late to get sufficient support in place.

Don't beat yourself up. You obviously care about your son and what's best for him or you wouldn't be asking for advice. We can in life only do what we think is best at any given time. If we all had the benefit of hindsight maybe our decisions would have been different...but maybe they would not have been. Good luck.

OP we all get things wrong. And we will all continue to do so. Move on now so you can help your boy.

If your school is advising a diagnosis, and you have already described them as sensible, follow their experienced advice.

I speak as someone who’s DC was not diagnosed with SEN until they were 15. They were ‘quirky ‘ and under the radar before that. But it was life changing and motivating for them. Apart from the educational structures that were put in place, extra time in exams etc the relief of having a ‘ label’ ( if you want to call it that ) meant there was an actual reason for the difficulties my DC was having.

And their problems started with a ‘spot of bother’ . But as they got older socialising became trickier for them. They had always performed ‘fine’ in school, by that I mean decently average. This helped to keep them under the radar. Later we realised that they had actually always been underperforming in terms of their own potential.

In hindsight I wish wish wish I could have helped them earlier but that is the way it worked out. I had been very low key about it all in the same way I recognise in you.

With no disrespect to you I hate the ‘ I didn’t want to label them ‘ thing. We all have labels. It’s like saying you don’t want to identify something. You would never think that about diabetes for example.

Don’t bother beating yourself up. Wasted energy.