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.

[Punxsutawney]

My 14 year old Ds is currently being assessed for asd. I too feel like I have let him down by not pursuing a diagnosis earlier. I feel guilty all the time as he is struggling so much. So I can totally understand how you are feeling.

I think it is definitely worth looking at going down the diagnosis route. Are you thinking of doing it privately or through the nhs? The nhs waiting lists are long. Ds has been waiting for a speech and language assessment since December and I think he will be seen at the earliest July. At the moment it looks like he will be going into year 11 in September without a diagnosis.

Hopefully some other posters might be able to advise you on the adhd. Just wanted you to know that you are not alone in feeling the way you do. The teenage years are so difficult anyway without the uncertainty of going through a diagnosis for a neurodevelopmental condition.

[ElephantBreath]

Thank you so much for replying Punx.

We would be going privately. She is at an independent school, although has previously been at a state school. She is likely to remain at independent school for the rest of her education.

You're right - the teenage years are a challenge in their own right, without having all of this too. If DD was happy, then I probably wouldn't be pursuing this, but I don't think she's happy. Everything is so frantic for her - she's desperate to be like her friends and it's just exhausting for her. She wants to do well at school, but can't seem to get it right, and is frustrated and angry.

[Punxsutawney]

I expect she just feels so overwhelmed by it all. My Ds has no friends and is incredibly socially isolated, its upsetting to see him so unhappy. Unfortunately his school are worse than useless but we are in a difficult situation with gcses next year. I told him this morning that I will support him to move schools even at this late stage if it means he gets the support he needs. He hates change so has never agreed to move even though he is unhappy, but his school offer such little help, it is very frustrating.

It sounds like a diagnosis may help your Dd understand herself a little better. Hopefully her school can be on board with it all and make changes and offer her support that will make life a little easier for her.

I think many children do show signs of difficulties from a young age but seem to cope and manage so they go under the radar as far as diagnosis. Unfortunately when secondary school and the teenage years hit their coping mechanisms don't seem to work as well anymore and the pressures of life, school and friendships just become too much. I never thought we would have to go down the autism diagnosis pathway with Ds but he struggles more now than he ever has. I hope that things improve for your Dd as it is so difficult to watch your child struggling.

[wisterialady]

My DS was a late ADHD diagnosis (at 13) after years and years of problems at school, despite being academically gifted. Your Dd looks like a text book case with perhaps a bit of ASD thrown in (the textures and text subtleties things may be ASD but everything else on your list you'll find on the lists of ADHD behaviours). Do not blame yourself. There are dozens of professionals who should have picked up on this earlier but it is all too easy to label the child as difficult or badly behaved - especially if they seem to be doing OK academically. There is no 'cure' for ADHD - only 'approaches' and the medication route (works wonders for many but it's not for everyone) but it is worth getting a diagnosis if you think she may need an EHCP at some point or you want to try out medication. I researched endlessly at the point where I realised there was a problem and wished to some extent that I hadn't - too much information and not all of it good or consistent or helpful and some of it downright scary. The best advice I got was from two American mums who have 5 'complex kids' between them and run a website called impactADHD.com. They adopt a 'coaching' approach. The most important thing is to salvage your relationship with your child - nothing else matters. You have to meet them where they are. If you understand how the condition affects them you can move to a position of complete compassion. If you can then get your child to acknowledge there is a problem (easy to say, hard to do), embrace their 'difference' and get them to engage with strategies to help them through, thats the best thing you can do. I'd also recommend 'A Bird's Eye View' by Chris A.Ziegler Dendy and Alex Zeigler. Edward Hallowel (an adult ADHDer himself) is excellent on 'what it's like to have ADHD'. His line is that we need to stop pathologising this condition and focus on gifts and strengths. The thing I found hardest was letting go of the child I wanted and accepting the child I have. However, once I understood that his behaviour was not just bad behaviour but that he was simply unable to do what was being asked of him because he has a neurological condition (leading to anxiety, anger etc.etc), it changed my perspective. In the end I decided not to sacrifice his mental health on the altar of GCSE results. He may get something (it's this year) but we have had to adjust expectations on that score and I think with that pressure off, we now have a happy boy. Be hopeful - your Dd may be 'a little bit different' but if you can meet her where she is (rather than where you want her to be), you'll find you can manage the situation and enjoy her as she is.

[ElephantBreath]

Wisterialady - thank you so much for your message.

It's made me feel quite emotional. Your comments are so accurate and have really struck a chord with me.

You're absolutely right that my relationship with dd needs to be my priority. I love dd fiercely and totally, but find her so frustrating and challenging, and don't like her at times. This is my own issue and one that I need to seek help with.

I've made a note of the website and book you've suggested and will have a look later.

Dd is still doing ok with her grades at school, but not as well as she has done in the past. I think her difficulties with picking meaning out of texts is really starting to affect her. I'm confident that she doesn't mean to behave badly or inappropriately. She is never deliberately unkind to anyone, but acts without thinking which winds others up. Until now, the worst that has been said about her in school is that she is a bit chatty and needs to add more detail to her work. I've mentioned my concerns about her reading concentration and friendship issues to her previous schools many but have always been reassured by the teachers that she's absolutely fine.

We are in the fortunate position (which has come about through sad family events) of me being able to consider giving up work for a year or more. Recent events with dd have made me think that being around more is exactly what I need to do. My job is all-consuming and means that evenings are very stressful with dd, dh and I trying to cram everything in to about 3 hours when we get home from school/work.

I think that if I were around more to take some of the pressure off dd, while we go through the assessment/diagnosis process, things would be easier for the whole family.

Dd was initially really interested in looking at some of the ADHD indicators and Vlogs with me. She said "But they're talking about me. That's how I feel and think". After initially feeling somewhat relieved, she's now struggling again with the idea that she actually be "wired" a little differently from her friends. I suppose that's a normal reaction though.

How did your ds react when you talked to him about ADHD?

[wisterialady]

Ds rejects his diagnosis and frequently says 'there's nothing wrong with me!' (although he has read many descriptions where he has agreed 'yes, that's totally me!' and he has played ball with the assessment process). Of course, in one sense he is right and I admire him for defending his right to just be himself. I think neurodiversity has always been with us in abundance but our modern culture is so complex and demanding that it's very difficult to operate in even if you have no challenges. We don't seem to have space for people who don't think or behave in a particular way. There is no wriggle room at all if you're a child, with the very rigid approach we have to education. As someone once pointed out, we value conformity in children and non conformity in adults (creativity particularly is rooted in non conformity) - so it's easier to be 'different' when you're a grown up.

I doubt very much if your dd is the only one in her class/friendship group with some kind of neuro-developmental challenge. If 'fitting in' is her main concern at the moment, you could try Judy Bartkowiak's NLP approach. She's written some great books/online things for kids who struggle with friendships. I could not get ds to engage with any of this so can't vouch for its efficacy but it looked like it is based on a profound understanding of what goes on and is again, based on coaching principles alongside cognitive behavioural science ie. this is stuff that your child can learn to do if it doesn't come naturally to them. If she has managed to navigate school thus far with the difficulties she has, she is obviously bright. It's important to focus on just one challenge/task at a time to avoid 'overwhelm'. Everyone has to get to know and understand themselves so they can handle whatever life presents so perhaps sell it to her as an opportunity to do this early in life while the rest of us often have to reach a crisis before we confront these things.

People think that the early years are the most difficult for parents in terms of work/life balance but I've come to the view that they need you much more when they are teenagers. In general I'd counsel (women especially) against stepping out of the labour market as I know from personal experience how costly it can be in terms of getting back in. It may also be that your job is keeping you sane! The whole 'special needs' enterprise can become a full time project and it may in the end not be a particularly fulfilling one. That said, things got much worse with Ds when I went back to work (I was a full time parent from birth to age 12) and I'll never know if that was a coincidence to do with puberty or whether my full time presence in the home had some kind of stabilising effect. It is a great joy to be able to run a home without the time pressure, cook proper food, meet them from school, take them to clubs, do the paperwork etc. One of the things the impact ADHD mums major on is 'setting the right tone in the home' and 'not getting triggered' - you want it to be an oasis of calm - right? This is difficult generally but is much easier to work towards if you are not in that frantic 'getting everything done before bedtime' mode.

Whatever you decide about giving up the day job, the critical thing is to look after your own needs - this has to be another priority because you need to be on top form in order to parent successfully. Getting an EHCP and/or putting in place additional support can be very time consuming. Maybe part time work is a possibility, just to keep your foot in the door?

The other thing I'd say is that the situation is completely dynamic. You, she and it will inevitably change and whatever is going on now will not be the same as where you will be in 12 months time. You don't ever need to feel stuck - there is always another route/solution/opinion. In terms of emotional maturity, the impact ADHD mums reckon you should deduct 3-5 years for an ADHD child and adjust your expectations accordingly. However, they do still mature and grow up, it just takes a bit longer and some grow out of it entirely while the rest learn to manage around it.

I used to say (jokingly and before we had a diagnosis) that parenting ds was the same as looking after a dog - food, exercise and lots of cuddles. This approach is still effective - diet is critical (avoid sugar at all costs) and exercise can help burn off extra energy and focus the mind. We humans completely accept/enjoy dog behaviour even though it is often distinctly ADHD! (I think there's a book on that too......)

[Girliefriendlikescake]

Hi my dd is 13yo and is about to be privately assessed for ASD, I can completely understand how you feel and feel exactly the same. I'm already looking back at certain behaviours and situations and thinking I should have realised something wasn't right.

I feel like I've been in denial for a long time as I've not wanted to admit Autism could be a possibility. However the more I read and see on Autism in girls the more I believe dd does have it.

My dd struggles socially, she struggles emotionally, she finds school very difficult, she has numerous sensory difficulties, she struggles with coordination and is clumsy, she is also very young for her age (plays with playmobil for hours) plus a host of other things.

When I see it all written down it seems obvious but I think she is really good at masking and is just funny/sociable enough to fly under the radar esp at school.

We're being assessed by the charity Bibic, I've heard good things about them so hoping it will be useful. They don't give a definite diagnosis but will give a detailed report into what they think and support us in getting a diagnosis.

[Littlefish]

Girlie - it's so hard, isn't it, feeling like you've let them down. But, as wisteria says, their schools haven't pushed the issue. They've managed to get this far so must have amazing skills!

Dd still has a box of barbies under her bed which she (very occasionally now) uses, I think she replays events that are going on in her friendship, to try and make sense of them.

Good luck with bibic. Perhaps we could use this thread as a place to share the assessment journey, he you like?

wisteria - you are so right about the dog analogy. We've always gone along the same lines too.

Food and diet is an issue as dd is incredibly resistant to fruit and vegetables. She still gags on foods with unfamiliar textures. She is obsessed with sweets though, and I've read that it can be because the sugar makes the body release dopamine.

[Littlefish]

Bugger. name change fail!

[Girliefriendlikescake]

Yes definitely up for supporting each other through the assessment process 😊

I emailed dds tutor over the weekend and he responded that he was surprised but actually thinking about it it might explain some of dds 'anxieties' he is going to let me know if he thinks of anything else that might be useful before the assessment.

I've also ordered a book called Aspergirls which has been recommended.

Dd seems to have had an okay day at school...

[Girliefriendlikescake]

I've also said before that kids are much like dogs, they need good food and walking every day 🤣

Dd has been anxious about her weight recently (I've read this can be common in ASD in girls as they can be anxious about their bodies changing) so has been trying to eat healthily.

In reality this means she now eats a banana at breakfast and tries to get her 5 a day. She isn't over weight and I've tried to ignore her comments about being fat, not sure if that's the best tactic though? She also loves sweet things, she isn't very good at moderating food and if there is food in front of her that she loves (crisps/sweets etc) she will stuff herself and then complain she feels sick.

Exercise def helps and dd has benefitted from running (she does the jnr parkrun) tennis lessons (her coordination is much better thanks to lessons) and horse riding (pricey but been good for her confidence and core strength.)

[Littlefish]

So, in a conversation with the Senco at dd's school, she has suggested that I speak to the GP about the Umbrella Pathway which is the way that children in this area are assessed for ASD.

This has side swiped me a bit. Not sure why.

[Punxsutawney]

I littlefish I think it feels strange especially if your child is older when someone else confirms what you are thinking. Ds's traits are becoming far more obvious now at 14 and I think everyone can now see what used to be just visable to us. Ds is still waiting for assessment but I know we are doing the right thing pursuing a diagnosis.

Good luck with the gp.

[Littlefish]

You're probably right, Punx. I had been sort of "comforted" by the thought that it might be ADHD. Somehow, it seems less "serious" than ASD. I know it isn't really. My mind is just in a whirl.

[Punxsutawney]

Yep, I think I have felt like that since Ds was referred last July. Things have got so much harder for him in the last year so I'm glad it's the route we have taken. He went to a youth group for teens with ASD for the first time last week, they were a lovely group but it suddenly hit me that we are on a different road than we expected to be on.

You probably feel a little shocked if you weren't expecting her to mention ASD. It is difficult, especially when your child is older. We have lived with our children and the way they are for a long time and we have adjusted our lives accordingly, I didn't realise how many adjustments I have actually made. It's our 'normal' really. I hope that if you do start on the diagnosis route it doesn't take too long. The waiting feels like forever when you have a struggling teenager.

[Littlefish]

How long do you think it will take to get your ds's diagnosis from start to finish?

[Punxsutawney]

Not sure. In our area all asd referrals for school age children must be done by the school themselves to the local child development centre unless camhs is involved.

We initially approached the school last April. They agreed to refer him in July. We had an appointment letter very quickly but the appointment wasn't until the start of December. He saw the consultant in December who agreed to assess for autism. She did a referral to an OT as he has fine motor skills problems and a referral to the speech and language therapist for a specialist speech and language assessment. He has been seeing the OT since February. I phoned speech and language yesterday as we still don't have an appointment and they said he was now 35th on the list, so another 8/9 weeks wait. After that he has to wait again to see the consultant so she can give feedback and a diagnosis if he meets the criteria. I think he will probably see her in September/October time but might I be wrong. So it will definitely be over a year from start to finish.

It is frustrating especially as he will be starting year 11 in September. If he was younger there would be more time for early intervention and support. But unfortunately he has to wait his turn even though life's a struggle and school is awful and unsupportive.

I think many people go down the private assessment route because of the long waiting times. I know it is different all around the country though, some areas are better than others.

[Littlefish]

We can see the EP privately, but he doesn't diagnose (because of it being a multi disciplinary diagnosis). I might look into doing it privately gd the waiting list is as hideous as I suspect!

[Punxsutawney]

We would have gone down the private route if the school had refused to refer. I'm actually amazed they did refer him to be honest, they have been and continue to be unhelpful in every other way! Good luck with whichever route you go down.

[Girliefriendlikescake]

I know what you mean littlefish by being thrown by other people suggesting ASD, I've only mentioned to a couple of close friends and family that dd is going to be assessed but no one has seemed very surprised.

I've had a strange week really, sometimes feeling sad for dd that she has these difficulties and also feeling guilty that I haven't done anything sooner.

Dd was bullied ystd by two boys who pulled her over and kicked her, her coat was quite badly ripped. The school rang me and said they're dealing with it but it just makes me so worried for the future, she is an easy target and secondary school is brutal at the best of times.

[Littlefish]

I had my first conversation with the Ed Psych yesterday on the phone. I gave him a run down of dd's strengths and then a list of her quirks, behaviours and difficulties. He is going to email me next week with a suggested plan of how we can work together and then it will be down to DH and me to decide whether we want to go ahead.

I mentioned to a friend about dd's possible ASD and she was incredibly surprised. She knows dd quite well and we've talked a lot about ADHD as one of her children has it. However, ASD had never crossed her mind for dd. It's all so overwhelming.

[Punxsutawney]

It is really overwhelming littlefish. We had a bad week last week and at times I feel like I don't know who can help. It's weird we are still waiting for assessment for Ds and I'm not sure how I feel. I watched Ds at his youth group for teens with ASD this week and he seems to struggle more than all of them with communication. I'm amazed that we have got to him being nearly 15 without a diagnosis. It also upsets me that he has missed out on years of intervention and support. I don't think we would be where we are now if he had support earlier.

I guess once you have received the suggested plan you can decide if you want to go down the diagnosis route. Deep down we have always known that Ds has ASD but it must be a shock for you if that was not something you were considering. Sorry I'm not much help but I can understand how overwhelmed you feel.

[Littlefish]

In the waiting room, waiting to see the GP to talk about starting the formal assessment process.

[Punxsutawney]

Hope the appointment went ok.

[ElephantBreath]

Thanks Punx. It went ok. GP listened attentively and didn't dismiss my concerns at all. He's been my GP for nearly 20 years, so he knows that I don't go and see him unless I have real concerns. He has suggested I go back and see him when we have the Ed Psych report, but also, that I ask the school to make the referral for assessment, as they know her better than he does.