How did having a diagnosis help your later diagnosed teen or pre teen.

[UntilYourNextHairBrainedScheme]

I'm somewhat concerned about my youngest child, who's just started secondary.

He does have a dyslexia diagnosis and had occupational therapy for about 8 months, which helped him enormously with fine motor skills. Academically he actually came on disproportionately well during home schooling - although he needed constant direction he's academically average aside from spelling. His grammar (in terms of correct complex sentence construction) and vocabulary are above average in his two home languages but his spelling is years and years behind.

His occupational therapist raised the possibility of ADD or ADHD (he's not classically physically hyperactive) or ASD, and agreed with me that he certainly has sensory issues (sensory seeking, especially proprioceptive sensory input - she was particularly struck by the fact that he seems incapable of becoming dizzy ). His gross motor skills are well above average while his fine motor skills are well below.

We live in a country where there is still stigma and lack of understanding from mainstream school teachers about neurodiversity, and there are vanishingly few children with any diagnosis except dyslexia in mainstream, so I've been reluctant to seek further diagnosis.

However he's just started secondary and a very nice teacher has raised a problem with emotional regulation/ a disproportionate outburst. She called as she thought problems at home. He's unhappy at school atm though nobody's "mean" and the work's ok he's feeling a bit lost and isolated - I am starting to worry about his social skills in group settings although out of school he has two incredibly good, close friends who he made independently (one at martial arts class and one just in the village playground gradually over the course of months and months before they began playing at one another's houses).

I am wondering whether seeking further diagnosis would help him. He's always been a happy child at home although he also had outbursts and unhappy times at primary we thought this was a bullying issue with a boy in his class, which we kept on top of, combined with a rather odd class teacher (very different ethos among older primary school teachers here than in the UK - children expected to fit in and eyebrows raised at anyone even a bit quirky). We hoped secondary would be better - he's no longer with the difficult classmate - but now it seems the issue might be something other than that child and teacher. He's now often sad at home during the school week, though happy at weekends.

Out of school help is more easily accessible here but help in school is non existent. My older children go to/ went to the same secondary and have never seen a TA in their lives, for example.

I am wondering if anyone can tell me how their teen or preteen found diagnosis helpful? As I can't make up my mind whether to take him back through the diagnostic process (it's fairly easy to access here, via a GP or pediatric referral - we did it for his dyslexia referal two years ago and were told that might not be "all" and to come back if he became socially isolated as he got older).

I'd really appreciate knowing how older children and teens have subjectively benefitted - understanding themselves for example.

I actually work with adults with cognitive disabilities, but my experience doesn't translate very well to my own child's situation!

Hi
Both my children (14 and 18) were diagnosed with ASD this year. Both are glad they have been diagnosed, my older child wished he had know years earlier. They now know why they find some things difficult compared to other people (ie social situations). They have both had therapy to help them understand how to cope when things go wrong and to help them get other past traumas caused by not understanding why they felt different. They are beginning to understand themselves better, ie they don't need to participate in social events if they find them difficult, and instead they do activities they prefer which helps their self-esteem. The school has given them accommodations to help them which they otherwise wouldn't have had. My son found having extra time and also a opportunity for a break in the middle of exams extremely useful. My younger one has had a lot of pastoral care which didn't seem to be available to the same extent before. Both of mine have suffered an extreme burnout, which led to an avoidance of school which may have been avoided had we had known about ASD beforehand. So, yes I would thoroughly recommend exploring getting a diagnosis.

VMJ1 thank you for replying, that's very useful. So far his problems have only ever been around school - he doesn't seem to have any problems at all with other social situations... but then as a family we don't really go in for big social events or any forced socialising, and we live in the middle of nowhere, so it could be he just hasn't really encounted overwhelming situations outside school. It could also be that he has ADHD not ASD...

I am just worried that in trying to help him we'll make things worse at school as teachers in mainstream rarely have special needs experience here, but I don't think I'd be worried about that if we lived in the UK.

He should already be entitled to extra time in exams due to the dyslexia diagnosis, although an educational psychologist has to re-evaluate the diagnoses children bring from primary and its not a given.

I hope your two are doing well now? It's useful to know their diagnoses helped them. Dod they feel positive about it immediately or were there stages of acceptance? Did they need to do some reading to get to grips with what the diagnosis really meant for them or did they already have a good understanding of ASD?

Hi
Regarding social situations, like you we aren't big socialisers either so always wondered if they just weren't used to socialising if we had to go to events ie family weddings. They are fine with one to one situations just not with groups. So your son, like mine, is probably very happy with his close friends, but put into a group situation it isn't so easy. Dealing with crowds and multiple conversations are challenges. In fact, the pull for returning to school for my daughter was the friendship side - she has managed to make a couple of close friends and they do her the world of good.
With regards to school, it hasn't just been the extra time that is useful. The teachers have been very understanding and realised that they will learn the work, just not necessarily by doing all the homework. They are bright already, they don't need to be doing all the exercises for practice. My daughter also has limited concentration and slow processing - repeating the same sum isn't necessarily going to help her! If the teachers aren't understanding, then you will probably have to educate them!
My 18 year old read up on ASD and actually asked to go for a diagnosis. Unfortunately he also had extreme burnout and this all coincided with lockdowns in the UK so help was difficult to get at first. As for immediate acceptance - it is difficult to tell. Both of them have suffered afterwards but it wasn't because of the diagnosis. Rather more to do with starting to deal with the trauma caused by previous experiences where they hadn't known about the ASD, ie all the misunderstandings in situations, the worry about getting things wrong, the exhaustion of the extra work they put in at school because they were perfectionists.
I am really pleased that this week my son started university living away from home. He knows he has to pace himself. He knows the types of situations he finds difficult and either avoids them or builds in rest time afterwards.
My daughter is now getting back to school with lots of support. Only time will tell...

VMJ1 thank you for replying again. Socially that sounds so similar.

I'm going to the GP tomorrow to set the ball rolling with possible diagnosis. I said I'd wait til mid October to go in and see his teachers, to give him a chance to settle first, but might try to make appointments for next week.

I am wondering a bit whether he'd be happier at a different school - there is a tiny semi private parent committee run Montessori ish (not strictly Montessori) one where coincidentally (or not) the boy he got on best with at primary school now goes and so does his martial arts friend... it might suit him better and unlike state schools here there is a huge mix of children and a significant minority with visible disabilities (there's not a single obviously disabled child among over a thousand children and teens at his current enormous secondary)... but then again it might be a disaster, I have reservations and don't want to move him to somewhere worse/ no better!

When I was finally diagnosed with endometriosis it was a relief. I could at last tell people what I had when they asked etc rather than refer to it as SWAN, syndrome without any names.

languagelover96 thank you. I understand that completely and wouldn't hesitate to persue a diagnosis if DD had horrific periods and I suspected endometriosis, but that is very different in my opinion. If DD had endometriosis I'd want it cured (not that you can completely cure it, but it's what I'd want and she'd want). Neurodiversity is different because I absolutely love who DS is, and if part of who he is is ADHD or ASD or even related to how dyslexic brainsare wired over and above just the difficulty with spelling and fine motor skills, I don't want that "cured".

That's why its so complex - because the question is whether a diagnosis would help him accept himself as he is and negotiate his place in the world as he is, but armed with strategies, or would it make him feel like someone afflicted with a condition which he'd be "better" if he just didn't have.

I went to the GP yesterday, who agreed to refer him. Then I tried to book the assessment (which is how it works here, non UK) only to discover that GPs can't refer for some inexplicable reason and we need a referral from a paediatrician. Anyone can go to a community paediatrician here and most people use them instead of GPs for young children, but the one we used when the children were small is near retirement age and fairly useless with anything not physically visible. I think he's only really useful for typical baby and toddler stuff. He's been less use than a chocolate teapot the last times and also makes a huge long drawn out process out of things, only to achieve nothing most of the time. He missed a physical issue my daughter had as a pre teen which the GP diagnosed and could have caused lifelong problems if left. Plus he has very limited after school appointments and always insists on the child being present so appointments outside school hours are weeks in advance. I don't want to start taking DS out of a school he's only been at 4 weeks already just to get the paperwork as the assessment process will require at least 4 days off school, and the paediatrician might randomly decide not to refer ... We'd decided to stop using the paediatrician as the GP is better...

Sorry, just a rant. One step forward, two steps back...

I've just logged on to ask much the same question.

My DC (13 and 16) have both struggled with severe anxiety during lockdown, and are both seeing therapists to help them get through it.

My younger child's therapist has suggested we get them assessed for ASD, and my older child suspects they might have ADHD.

Both of them would dearly love a proper diagnosis, but getting it through the NHS is nigh-on impossible given the huge burden on mental health services, so we'll have to go private. And while DH and I are on BUPA, the DC weren't until very recently, so the BUPA mental health nurse we spoke to reckons they'll probably class any investigations now as pre-existing, so won't pay out.

The cost for an ADHD assessment is £800 and for ASD it's £1500!! And that's after an initial consultation that costs £300 each. We'll find the money somewhere if we have to (wibble), but we'd feel better about it knowing that having a proper diagnosis will actually help our children in a concrete way, rather than just giving them another label to hang on themselves (they both seem very into collecting labels at the moment ).

So, like the OP, I'd be very grateful for stories of how having a solid diagnosis of Asperger's or ADHD has helped your child cope with navigating the world.

My dd is 17 and we’re just starting a private asd assessment, it is expensive, an initial £400 to get an initial view of whether it is worth doing a full assessment and then if an additional £800 for the full assessment.

She has extreme anxiety, sensory issues and problems with social situations, she’s also dyslexic and hyper mobile.

We’re doing this because dd thinks it will help when she goes to university, she wants a name attached to her problems and to understand why she can’t cope her feelings, up to now she has struggled (especially for the last 4 or 5 years) and really hasn’t understood why.

I really hope she gets what she wants out of this (the initial assessment is next Tuesday)

We'e got the referral (which I had to verbally argue for in German for half an hour as the paediatrician, unlike the GP, decided all non children's problems are because of masks and social distancing and wanted me to agree with her on that. She insisted that my impression that he was very happy during homeschooling, enjoyed masks especially at the beginning when cloth Spiderman ones were allowed, and his problems preexisted Covid-19, were simply me being like other parents who assume children are always fine... Which makes no sense given that I was explaining how he isn't fine...)

I thought that was frustrating but now I see AnnieLobeseder and InDispair having to pay for private investigation, so I appreciate a bit more that having to argue a paediatrician round isn't a great hardship! Its still gatekeeping though - lots of parents wouldn't have the confidence, and five or ten years ago I wouldn't have had the German skills, and plenty of immigrant families don't, so wouldn't be able to get what they need for their children.

Our actual referal to the center where the psychiatrist, psychologist and specialist paediatrician will assess him isn't until January, but I guess that's okay. I'll keep you posted!

sorry, random"non" in that post! Not non children obviously!

I thought I would update, dd had her assessment (private one) and it came back with the diagnosis that she is autistic, the lady doing the assessment was excellent and gave dd some tips on how to improve her social skills (just very simple ones).

I’ve been talking to dd about what to do with this diagnosis, we’ve agreed I’ll let the doctors know because dd hates going to and talking to doctors so I always go with her and do some (or all) of the talking, dd has a lot of health issues so we’re there a lot, quite a few of the doctors don’t like me to talk for her, I think they assume I’m just a pushy mum, so I’m hoping this aspect will be easier.

I’ll also speak to the college and let them know, she’s been having communication difficulties with her teachers, so again hopefully this will help.

Dd will also put it on her university application and this is what we really wanted it for, so that she could access help at university.

For me it’s been a bit of a double edged sword getting confirmation of it, I’m happy dd can understand herself better and hopefully be able to access support but I’m really sad that I didn’t pull all the threads together earlier and realise that her quirky behaviour and social difficulties were due to autism because I wonder how much easier life up to now would be (she’s had some quite severe mental health problems and I wonder how much of this could have been avoided )

I'm glad you got the diagnosis - my DD was 15 when we finally had her diagnosed with dyspraxia. She felt it was a huge weight off her shoulders that explained why she saw and did things differently. It got her extra time for A levels and support in 6th form for making sure teachers taught her in ways that suited her learning style. Now in HE she is entitled to Disabled Student Allowance which paid for most of a MacBook, a printer and printing and paper allowance, microphone for recording lectures and a lot of software. It should also give her extra time and some accommodations for future exams as well.

AnnieLobeseder that's expensive, especially with two children going through at the same time. I guess we're lucky here with just having to talk doctors into making referals!

InDispairThisWeek I hope it helps your DD to have the diagnosis - can you update us on how it helps her internally - I mean aside from the practicalities of school/ university having to make reasonable adjustments, how it helps her understand herself and her interactions with the world? I'd also especially like to know what tips your DD received which she's found helpful if possible!

londonmummy1966 that huge weight off her shoulders is the absolute goal isn't it! That's what I think we're looking for above all!

I have a question for people who've been through diagnosis - did you explain to the assessment team which diagnosis you were expecting? Was it purely an ASD assessment? Or a general one? I don't want to push the diagnosis in a direction which might not be accurate, but also known parent and close family and teacher input is important to the arrival at a diagnosis, as not everything can be observed fully in three 1:1 sessions (which is what our assessment usually is) with the child/ teen, not seeing them in group settings or under real stress (my funny little boy rather likes assesments - I wasn't sure whether to send him to a 3 day entrance test for his current school, as his grades didn't qualify him automatically, but its been his favourite part of school so far ). I'd like the assessment process to ve a genuine assessment rather than just jumping through hoops for a diagnosis, but don't want to have his social challenges missed, which they might well be in 1:1 interviews and written psychological tests...

UntilYourNextHairBrainedScheme, dd is very socially anxious and misses a lot of the social cues, she also gets missed out because she keeps her head down and she hates eye contact so the assessor told her that when she she wants to join in she doesn’t have to make eye contact (which is how people usually make known they want to say something) but to change her position so she sits up and puts her pen down indicating she wants to say something.

Also to learn social cues that would be used in a conversation, nodding your head making a noise in agreement etc, dd usually just sits there staring into space looking bored so people give up even though dd is listening.

She also said in situations where dd doesn’t understand what people want, just to ask for clarification (not sure if dd will be able to do this as she is very reserved).

Also to have a few stock ‘small talk’ phrases that dd can practice so she has them to hand in a conversation.

She may have said more but it was a long, long assessment. We’re getting a report so I’ll see if it says anything else. I’m not sure how much of this dd will be able to follow immediately but hopefully going forward (for example when she starts university) some of these will help her.

Happy to have stumbled upon this thread. We are just very recently on the other side of the assessment process which has resulted in 13yo DS being given a diagnosis of autism with traits of ADHD. I don't know what the wait times are like in other areas, but locally we were told it could be up to 3 years from the point of acceptance of initial referral (of which ours was rejected...so we went private instead) I honestly didn't expect an autism diagnosis. We were referred by his secondary school for problems with inattentiveness and low mood in lessons, but in hindsight, the whole thing makes perfect sense. DS has always been a bit young and quirky, struggled to make and maintain friendships, had lots of motor skill delays and really had difficulties regulating his emotions. I had that motherly instinct that something wasn't ok, but was constantly ignored and I was often dismissed by just about everyone-family, friends, teachers of DS, GPand accused by others of being too anxious and looking for something that wasn't there.

We are still at the beginnings of conversations with DS about his diagnosis, but I know at least for ME I feel like a tremendous weight has been lifted off my shoulders. I hope that with time and understanding, DS will start to feel the same.