Possible ADHD and ASD in Teen DD.

[ElephantBreath]

I don't really know what I'm asking, but I hope there is someone who may be able to help me make sense of everything.

Dd is 14. She's always been challenging at home, but has coped ok at school. She has always tended to explode in the car on the way home though. In the past, she's done really well at school academically, but is starting to do less well as she gets older.

This is a list of some of the more obvious behaviours.

Social skills have always been poor - can't see things from anyone else's point of view
Very oppositional - the first word out of her mouth is usually "No".
Poor organisational skills - needs huge amounts of support from us to make sure she's got the right books, kit etc.

Short attention span
Unable to reflect on past behaviour and learn from it
Interrupts CONSTANTLY
Talks CONSTANTLY
Highly emotionally reactive
Touches other people or things constantly
Falls out with friends all the time
Problems with textures in food
Problems with textures of clothes
Doesn't like food touching on her plate
Has short and medium term fixations e.g. particular films
Very poor time-keeping and planning
Fidgets and moves all the time
Easily distracted and then distracts others
Cannot bear to get things wrong
Terrible pain threshold - over-reacts to every small injury or illness
Finds reading comprehension impossible - cannot read the subtleties in texts and work out the answers
Desperate to be the same as her friends and constantly mimics their behaviour, without there being any real depth or understanding.

Generally immature, compared with her friends, but looks older than her age.

Very physically mature
Risky behaviour with slightly inappropriate images and words being posted on social media.

She moved to a new school in September, and we have had frequent reports of her being distracted, and then distracting others. Apparently she is "borderline disruptive".

It has now been suggested by a couple of her teachers that we consider having her assessed for ADHD. Simultaneously, her counsellor (who we see privately, but also works for CAHMS) gently suggested the possibility of ASD.

We have our first appointment today to speak to the school formally about having her assessed.

I feel bereft. I feel like the rug has been totally pulled from under me. I've always felt that DD was a little different from other children, but when I mentioned it to any friends, my concerns were always dismissed.

Dd and I have a fractious relationship - we are very similar and disagree a lot. I feel like I have totally let her down by not recognising all of this sooner and doing something about it.

I'm busy reading a book called "ADHD; living without breaks" which has been recommended by a friend. Does anyone else have anything else I should be reading?

Does my list about dd sound like ADHD/ASD?

I would be so grateful for any help or support.

Glad it went ok and he wasn't dismissive. It's the same in our area the child development centre will only accept referrals from schools not the GP. Hope its not a really long wait for you. Ds's school have just written another letter to the hospital to try and speed things up. The NHS waiting times are frustrating, that's for sure.

Hi all, dd had her private assessment and came out with a score that means it's 'highly probable' she is autistic. They're going to send me a detailed report and then I'll try and work out what to do next.

It's been a strange few days trying to make sense of it all tbh. Not sure how I feel atm....

I'm not surprised you feel a bit odd. How long will it take for the report to come through?

I'm not sure, hopefully not too long...

How is everyone doing?

So, dd saw the Educational Psychologist at school 10 days ago, and we met with him last week.

He was understandably reluctant to give any firm information, but after I pushed him (not physically!), he said that the behaviours he had seen were "indicative of ASD". However, he also said that whether she would get a diagnosis was by no means clear cut. He said that she is bright, has lots of coping strategies, and is a teenage girl.

We are now left with the thorny problem of whether to move her from her highly selective, corporate independent school. She doesn't want to leave, but I'm just not confident that they are able/wiling to meet her needs.

It all feels a bit odd. On one hand, I'm feeling slightly relieved that I haven't been wrong all these years, in spite of being told by everyone I ever spoke to, that they didn't see anything. On the other hand, I'm devastated for dd that we probably missed opportunities to put support in place when she was younger.

The EP is going to write his report which will make it clear to the school what support needs to be in place. Whether they will follow that advice is far from certain. Lots of dd's difficulties are with social skills and she is rapidly pissing her friends off!

We haven't decided what we're going to say to dd. Any advice?

Also, where can dh and I go for support about how to parent her more effectively. She is so highly reactionary that almost everything we say to her, even the most innocuous things, result in her shouting and getting angry. She's having counselling, but that doesn't seem to be enough.

Sounds like there are definitely indicators for ASD. Although I guess like he says he can't say if she would actually meet the criteria. Have you watched the Chris Packham documentary about autism? I'm keen for Ds to watch it but he won't at the moment. He talks about being undiagnosed as a teenager and it is exactly what Ds is going through. I do find it upsetting to watch though.

I can understand your worries about school. Ds is at a all boys state grammar and it has been completely the wrong school for him. Unfortunately he starts year 11 in September so we feel we have to keep him there. I am also upset that Ds has had no support before now. He is massively struggling and the school have stepped up a little but it all seems too late. I am fearful that the damage is done and we won't be able to get back from this even with support. Ds is just lost and so unhappy.

I wish I could give you some more advice but I'm not sure I'm doing a very good job with all of this. There seems to be little support out there. Especially for parents of teenagers. Has the EP given you any advice for home?

It is just so very difficult with undiagnosed teenagers. They are dealing with the teenage stuff and hormones but are also aware that they are different and can't understand why.

Good luck with the school, I guess see what kind of support they are willing to offer. We have had such a fight with Ds's school. Only now with the intervention of a member of the senior leadership team have they started to communicate and put a little support into place. I'm not much help but I wanted you to know, you are not alone. It feels such a lonely process with a teenager as most children get a diagnosis when they are younger. Ds finally has his ASD speech and language assessment tomorrow after a years wait. I still feel guilty though that he is going through this at 15, it should have happened a long time ago.

Hi Elephant. Have only just caught your post. Your DD sounds so much like my DD's, who are both, finally dx ASD, but it took many years waiting on NHS. My eldest was 18 (8 at initial referral), Youngest almost 12 (6 at initial referral). The delayed dx has done a lot of damage, particularly to my eldest who is now 20. You say you have the means to be able to get your DD assessed privately. I urge you to please stop pinning your hopes on the NHS route & get her booked in for a private assessment now. She could have her answers within weeks instead of many years on NHS. By all means continue with the NHS route to get their dx, because it will also be useful to have, but get her assessed privately & if appropriate, on medication ASAP. If this had been possible for me it wouldn't have taken my eldest failing her A levels & becoming a virtual recluse, refusing to go to collge & at point of break down before she had appropriate treatment, which for her was Sertraline for her anxiety. It has truly worked wonders.

Another thing. When you read the books about ADHD, did you recognise yourself too? For me it was a massive lightbulb moment when my youngest was being assessed for ADHD at 6. I saw myself more than her in everything I read & was subsequently dx by an ADHD expert (not NHS) but at least I finally knew why I had also struggled so much & was so different. Procrastination is a huge ADHD trait btw, as is hyperfocus. I urge you to stop procrastinating & hyperfocus on getting your girl what she needs asap. Feel free to message me for advice as I have definitely been there, done that & got a whole collection of T shirts lol.

Hi elephant - keep pushing to diagnosis NOW. Your initial list is identical to my DD and if you search you will see a history of me asking about teenage depression etc. Well after hitting a crisis at GCSE we switched schools only for problems to continue j. First A level year, leading to self harm and serious depression. Psych suspected I diagnosed ADD and in fact after testing DD has now been diagnosed with ASD, ADD and ODD (which follows un- diagnosed ADD). Although I real tears at diagnosis I also feel huge relief that rather than having a mental health problem (which is what scared her) my DD has a neurodiverse brain that can be understood and worked with. this age is critical - if you can afford it, get her properly assessed now. We had to go privately but if we hadn't I dread to think of what would have happened - the important point to understand is that most girls only get spotted when the academic kid at school gets harder and harder. My DD is aiming for a top university, but without diagnosis we could easily have reached the point where we would not even make it through the A level course. Hope that helps.

You need to see a paediatrician privately to get an ADD/ASD diagnosis. Lots of clinics around as the NHS has virtually stopped diagnosing in many counties. She may get 25% extra time as a result as well as know what you are dealing with. Really don't delay. EPs can't diagnose ADD or ASD you need a doctor, and the NHS is most areas this would involve 2-4 year plus waiting time which you cant afford. With the EP and the paed letter your school should be able to implement the accommodations needed.

Hi,
Just to say I can empathise. Ds has ADHD and ASD and is a teen. What I can tell you is that reading many books, Additude (Americannwebsite) weekly articles and accepting the differences are key for us. We still struggle but since we became much more informed through more info ( inc courses through Camhs) it has helped us to manage his behaviour differently and realise how he thinks rather than feeling he is doing it “on purpose”. He has an EHCP is in mainstream school and has a few close friends but struggles socially.
Also recommend Christopher Green book on ADHD, Birds Eye View, social skills for ASD teens (or similar name - do amazon search and you’ll find loads), adolescents on the spectrum.
DS started meds after long time us avoiding them, made a difference but still hard.
Worst part is others judgement, even close family who should have informed themselves and know better. Because he “looks ok” they still judge our parenting rather than bothering to understand.
It’s tough but diagnoses helped us to accept and manage better. We no longer tell to stop messing with x, and get annoyed when can’t (like a toddler) but simply move x and provide quiet fidget instead, calmer all round!!

Hi all

It's been really interesting to read all your posts. Sorry I haven't been replying - it's been a bit full on here!

So, the new school year has started, and from an academic point of view, things seem to be much more settled than last year. Dd's teachers are following the strategies in her Provision Map, and dd is much happier and doing much better as a result.

However, friendship wise, things seem to be getting more challenging. Dd has noticed that over the summer there were almost no invitations or arrangements made by others, even though she tried a couple of times. She is starting to notice that the other girls have close friendships. She has loose friendships, but they seem to be quite shallow.

She has started staying away from the "popular girls" who she spent all last year trying to hang around with. I'm very relieved. The "popular girls" were not very kind or accepting and caused an awful lot of upset and angst for dd last school year.

She is struggling at her sports club as one of the coaches is very negative generally, and dd takes it to heart every time something negative is said to her. We've asked to meet with her (which will give us an opportunity to explain about dds challenges), but she's been quite difficult about it.

We met again with the EP and he confirmed that he believes that Dd is autistic. I know he can't diagnose, but I pushed him for an answer and I believe that because I'm in education, and asked the right questions, he gave us more information than he would normally do.

As a result, we are talking to dd this weekend to introduce the idea of being autistic, and to start discussions with her about formal diagnosis.

Please can I ask a few questions about formal diagnosis.

If we decide to go for private diagnosis, who do we need to approach?

Can we start a formal diagnosis through the GP, and do private diagnosis at the same time?

Does a private diagnosis carry as much weight as NHS?

Would dd get additional time in exams with a private diagnosis, or do exam boards only accept NHS diagnosis?

Elephant glad to hear the academics are going well, sorry that the social side is still really hard.

I last commented on this thread back in June, Ds now has a NHS diagnosis (has taken 15 months) and we are still waiting for the letter to confirm it. Ds is in denial at the moment though, does not want to engage or talk about autism.

I think you can do both NHS and private diagnosis. We never looked into private so I'm not much help with that unfortunately. I think a private diagnosis will be taken just as seriously though. It will be far quicker too, you will be probably looking at a year minimum on the NHS and most areas are far longer than that.

Ds doesn't get any extra time in exams because of his autism diagnosis. He has handwriting issues but did not score low enough in the speed test for extra time. The extra time normally comes from a learning issue and would need to be assessed alongside the autism I think. Interestingly as I have learnt more about ASD I can see that Ds also has issues with executive functioning and organising himself. I've not actually mentioned that to the school yet, we are due another meeting soon.

Hopefully another poster will be along to advise you the best way of getting a private diagnosis. Good luck, hope your chat with Dd goes ok.

Private dx you can self-refer. Do your homework first, ideally ask someone who works for the NHS part-time, then the dx cannot be disputed. NAS have a list of people who dx privately.

NHS dx are often done by a team, Paed, Ed Psych, SLT and OT, some private dx are also done this way. Again, investigate.

Don't be drawn in with a "pre-dx interview" that some offer. Several people have thought they were going for a full diagnosis when in fact all they had were screening tests for their child's possibility of having ASD.

Yes, you can start the dx process both simultaneously, NHS is 18 months to 2 year wait, so best crack on to get on the waiting list. You can always cancel when you have the private "approved" dx if you wish.

Would dd get additional time in exams with a private diagnosis, or do exam boards only accept NHS diagnosis?

Depends on specific tests, it's not dx based. The exam board usually has a list of requirements and one person at school will be nominated to deal with the extra time requests. Some schools assess pupils themselves, others refer for an individual assessment.

Thanks @BlankTimes. Very useful information.

We had a very gentle conversation with dd about the Ed Psych's opinion. Although dd listened at first, as the last couple of weeks have gone on, if we try and mention it she just shouts that she is not autistic and leaves the room. She is desperate to be the same as her friends, and doesn't want to stick out as she says she will be bullied if anyone thinks she is autistic.

We will have to leave it for now, and try and keep gently talking to her about formal diagnosis.

Elephanr I think that sounds completely normal for a teenager. Ds is still in denial about his diagnosis a month ago. Unfortunately at the moment it has had a negative impact on our relationship with him. He hates us for pursuing a diagnosis. We still believe it is in his best interest though and hopefully one day he will see that too.

Not sure how it would work in your area but in our nhs trust the referral comes from the school. So Ds was referred by his school without even knowing about it. I told him what was happening once I got the first appointment through.

It is incredibly difficult with teenagers because they so desperately don't want to be different from their friends even though they know they are. It is especially difficult for those teenagers that have gone undiagnosed as being given a diagnosis when they have all the teenage stuff going on as well is really hard.

Good luck whatever you decide to do.

Does my list about dd sound like ADHD/ASD?

Social skills have always been poor - can't see things from anyone else's point of view
Very oppositional - the first word out of her mouth is usually "No".
Poor organisational skills - needs huge amounts of support from us to make sure she's got the right books, kit etc.
Short attention span
Unable to reflect on past behaviour and learn from it
Interrupts CONSTANTLY
Talks CONSTANTLY
Highly emotionally reactive
Touches other people or things constantly (
Falls out with friends all the time
Problems with textures in food
Problems with textures of clothes
Doesn't like food touching on her plate
Has short and medium term fixations e.g. particular films
Very poor time-keeping and planning
Fidgets and moves all the time
Easily distracted and then distracts others
Cannot bear to get things wrong
Terrible pain threshold - over-reacts to every small injury or illness
Finds reading comprehension impossible - cannot read the subtleties in texts and work out the answers
Desperate to be the same as her friends and constantly mimics their behaviour, without there being any real depth or understanding.
Generally immature, compared with her friends, but looks older than her age.

All the traits I have highlighted were evident in our son all the way through school.

In his early years at primary school he regularly invaded other people's space, pushing his face up close or touching people with his nose.

He didn't fall out with friends because he didn't have any.

He had no clue about planning or timekeeping so we had to make sure he was where he needed to be.

He was diagnosed with ASD when he was nearly 8.

He is grown up now and having having been to a fantastic college specifically for students with autism, he has learned to deal with most of his issues and his social skills have improved.His timekeeping and organisation skills are now excellent and he is a lot calmer and more confident than he was.

And despite struggling so much with inference skills in reading comprehension, he finally achieved a GCSE Grade 4 earlier this year, at the 4th attempt.

@Punxsutawney I’ve just come across your post and hope you don’t mind me referring to it. My DS is 15 and we’ve received an autism appointment for 3 weeks out of the blue after not hearing anything for 3 years. However like your DS, he is very very reluctant to be labelled as autistic and does not want to stand out from his peers. I was wondering what went right and wrong from your journey and whether you could share any tips for managing this. I think that he is clearly autistic from his traits but not sure what benefit the diagnosis will have - he wouldn’t, for example, want to have extra time in exams (he has GCSEs next year) and would refuse to go to the exam if we made him as he would be socially embarrassed. Help!

I think he knows he is autistic or at least a bit different deep down but doesn’t want to recognise this. And he will absolutely hate us for going to the autism assessment and worried I might not even get him there.

This has just popped up. I wrote it 4 years ago. I'm feeling very emotional reading it through again

I'll come back and update it later. It's been an interesting few years! 😳

@biggreentree my daughter shares many of your son's concerns about standing out.

Oooops! Name change fail.

@Littlefish no rush, and fine to PM me separately if you’d prefer x

@biggreentree
Ds is 19 now and has kind-of accepted his diagnosis. His mental health did deteriorate considerably though. He didn't take his GCSEs due to covid. But he began to struggle more and more. We ended up applying for a EHCP for him and he attempted mainstream sixth form but dropped out. Now he's at a specialist placement for young people with SEMH and ASD. And we have a long way to go as far as independent living, social interaction and mental wellness.

Looking back the only thing I would have done differently is pursued support for Ds earlier. His mainstream school were beyond unhelpful and Ds was masking far more than anyone knew. I think as far as a diagnosis goes, it takes time to accept it, especially for a teenager. I don't regret pushing for it.

Ds was angry, I'm not sure if it was at us or just the diagnosis itself. His complex struggles now indicate though, how important a diagnosis was. He's going to need pretty significant support for the foreseeable future and I think his diagnosis explains why this is. I'm still amazed he got to 15 without a diagnosis. He was failed all the way through mainstream school.

Your Ds doesn't need to tell anyone if he doesn't want to. But I think in the long run it does help with understanding who you are, even if at the time it doesn't feel like that. I actually got an autism diagnosis myself last year age 47 and how I wish I could have received that earlier.

@Punxsutawney thanks for responding so quickly. A tough day here, DS hasn’t eaten lunch, has flooded the bathroom due a lengthy shower (he also has contamination OCD thrown into the mix) and keeps yelling at us.

Like a lot of the posters on here, I feel really guilty that I didn’t act on this earlier when he was at primary and less bothered about other people’s impressions. This would have made an assessment a lot easier.

When I had an initial chat with CAHMS, they asked me to talk about how he was when he was little and talk through any issues over the years. It became apparent to me during this exercise that he’s acted differently for years, from bad separation anxiety, hatred of loud noises, not talking til about 2, not been able to keep friends, socially awkward, extreme feelings (really happy or really sad) etc etc. and I’d never clicked. To be fair I had 3 further children after him, had cancer and also work so a busy life meant that time just ran ahead of us.

Like other posters have said, his primary or secondary schools have never flagged any concerns, and they are both excellent schools, he’s the kind of nice lad who is middle academically and gets lost in the crowd. We’re looking at him failing his GCSEs at this stage, he is predicted 5s but got 1-3s in his recent progress exams.
I am so worried about how he will react to his assessment appointment in 3 weeks.

He does function okay, he goes to clubs, hangs out with his friends in the park (although his friends change reasonably regularly), is a lovely kind big brother and will often tell me he loves me and will be the first to ask me if I am okay if I am worrying. Not sure if this means he could be ‘high functioning’ but I have no idea.

He breaks up from school next week and we go on holiday for a fortnight days - I’m not sure I tell him now about the assessment so he can get used to the idea (but probably it ruin our holiday as he will be furious) or wait til we get back when he is more relaxed and school is a distant memory. I’d be grateful for any thoughts and tips from you wise ones!

Thank you for listening to my ramble and apologies to anyone if I’ve caused upset by opening an old post that brings back memories. I do find it a huge source of solace to know that it’s not just me and bad parenting however. Thank you for reading.