Published on 12, July, 2020
My son is 17 and sitting A level equivalents here in NZ. He has strong ADHD, Aspergers and since starting on Concerta, epilepsy. Meds are concerta, some rubifen and epilim.
Last year for o levels, we had a largely willing kid who though exasperating at times, got on, was fairly focused before exams and passed with an overall merit. This year for A level as we do it in one year, it was a big jump up. Things were harder and some fails slipped through by mid year, there were as many fails as passes although excellence across the board in digital technology of course. We are currently sitting exams but I think he will fail almost all of them. IQ Test said to be around 70%.but not on meds when this was taken at age 8.
So in detail, what is happening is this... assignment work involves lots of research and he can sit and research for a day or two and come up with almost nothing or something that is way off base. We have to find the websites, define the areas to look at (provide a framework) and then review and challenge all the way along. My son cant work in class so we have been putting in 75 - 150 hours/assignment. So yes he and I are both exhausted. For the large six months he has been hugely distracted and has switched off completely in chemistry and maths as 'he was never going to learn anything from these people' and apparently read kindle every session.
For exams over the last term we have done some revision and quite a lot in the 10 days before exams but here is what is happening. The info is going in but not coming back out. There is like a complete disconnect. For example, he is doing Wilfred owen war poems so I summarised some themes that are still relevant in todays society as this often comes up and is one of the easier questions. He read it and came in and said, its all very interesting but I don't see what it has to do with English? Similarly I have got him a maths tutor who said, he should be able to get a pass on the exam but he had no idea whether he would. He said he has taken on board the processes and knowledge needed but he doesn't seem to be able to access that knowledge without being prodded or reminded,
So what I have seen also this year is: Pretty aggressive behaviour on the weekends and a kind of weird aggressive, stirring from first thing in the morning. He even looks kind of weird and doesn't stop until there's absolute chaos. Literallly, he can lie on the couch for 2 -3 hours watching TV and if you say anything at all, like you need to get on with some study and it starts. Massive rudeness, aggression,really offensive name calling (not your tame 4 letter words) - these things are kind of sick. The behaviour comes out the blue and is there one day and not the next.
School his behaviour is good, its catholic and they have detailed weekly notes. His behaviour has been distracted most of the year. Organisation is worse than ever, cant get out of bed, wash his face, get dressed or clean his teeth without someone forcing him to. His Dad now takes him to school because I couldn't stand it any longer and he is late to work nearly every day. He almost always leaves the house without shoes and socks on, coats, no personal hygiene, showers about once every ten days and only after nagging. Has no friends, doesn't seem to bother him, has a cat he was close to, it is dying but he now says he cant feel anything, knows its sad but doesn't feel it.
Support for disability in this country is probably one of the worst in the developed world. Apart from seeing a paediatrician for his meds and the hospital for his diagnosis. I have never received any support or guidance. We have not had a day off from him for about ten years and only know anything about his condition through reading and online.
So what do I do? I don't know whether this is normal. The schools here don't have special services for disabled kids but they think it is normal for kids like him. I don't know whether to take him to a psychiatrist for a complete review of his meds or a new diagnosis or what to do. He has recently had his concerta upped but it has made very little difference.
We were hoping to get him through his final year and off to university and into an applied software/it degree but at this rate he wont make the standard to get in. He does not qualify for a supported living allowance or help with education as he is theoretically capable of working for 15 hours a week.
Any thoughts on what to do? Whether this is him reaching the level of functioning for him? Whether new or different meds will help? Whether he may need a new diagnosis? What's up with this weird behaviour? Otherwise he is a home loving, hard working and very responsible kid with a good sense of humour.
I don't want to keep pushing him if he is doing the best he can but I cant help noticing the vast difference between his focus and on to it ness this time last year and today, He has an exam this afternoon and is wandering around playing with the cat and I have to keep reminding him, there's an exam in 2 hours and its like he has forgotten.
Really grateful for any help or suggestions
N
Hi Sparky,
I think that it is very common for some ND teens to need a huge amount of prompting in order to manage their everyday lives. And, in my understanding, needing daily prompting to get organised enough to leave the house, personal hygiene, and to stay on top of everyday life (such as school work,) can be very much a part of living with and supporting someone who is on the spectrum, regardless of their IQ or high academic abilities.
There can often be a significant ‘imbalance in skills’ in this way for our NDs, and I think lack of independence (autonomy or maturity) can be a really hard one to get your head around as a parent, especially if your child is really bright in other areas, such as academically. However, it is for this reason that some NDs may require some level of supported living throughout their lifetimes.
In this respect, there are no easy answers, other than trying things like using visual timetables (lists of things they need to do every day such as brush teeth, put on socks etc.) to enable a routine to develop in order to try to enable our kids to become semi/independent. Rewards and incentives, such as scoring ‘points’ (which go towards getting something they may want, like a new video game etc.,) for ‘completing hygiene chores each day,’ can work well as, often, there may not be the (social or personal) motivation to do these tasks simply for their own merits (there may not be any personal motivation whatsoever to be clean, for example.)
About the school work situation- there is a lot going on in your post, and so it’s hard for me unpick some of it. However, I will do my very best to pick up some of the points you have mentioned:
The assignment/research situation seems very typical to me- in my understanding, it is very usual to have to provide ‘scaffolding’ and simplify complex topics and tasks down into small (unambiguous) manageable steps, in the exact ways you have been doing. Otherwise, if topics or tasks set are too broad or ambiguous, our ND kids can simply get lost and completely stuck, wholly unable to move forward with a task (so they sit and do nothing) or they go off on a tangent and come up with some fantastic work, none of which the teacher actually wanted nor the spec required. If this is happening often with homework it may be indicative that teaching staffs may not be effectively supporting your son to access his lessons or subject material- if this is the case with homework it’s likely also the case with classwork too. And if your son is not able to effectively access the subject material it’s a sure fire way of leaving him no choice but to disassociate, withdraw, and entirely zone out about it all?
I think it’s always wise to listen very carefully with a very open heart when our ND kids offer us some vital information… when your son said that ‘he was never going to learn anything from these people…’ (about Maths and Chemistry) this could be ‘code’ that he didn’t understand a word they were saying in class- not necessarily because he couldn’t understand the topic, but these teachers may speak fast, make jokes, rely heavily on inference, and otherwise simply communicate in ways which were not accessible to him? Or they may have been working at a level that was beneath him? If either of these are the case, it is perhaps understandable he chose to read his kindle instead of ‘staying’ in a potentially baffling, boring or anxiety provoking situation?
The aggressive behaviour could be due to a plethora of different reasons- he is a (hormonal) teen after all, and a teen facing a great many daily challenges (ADHD, ASD, Epilepsy) it is little wonder if he is feeling pretty P*d off sometimes, yes? He may also be feeling very stressed about his upcoming exams but is unable to effectively or rationally communicate this stress (to himself or others.) All behaviour is communication after all and he will have undoubtedly picked up on everyone’s worry around him (at home and school,) even if he is not consciously ‘worried’ about the exams himself.
The meds could be responsible for his mood swings; including the fact they may have numbed him from feeling his sadness about his cat- although, if he has impairments in ‘imagination skills’ (and therefore cannot effectively imagine future events) which can be common for some NDs, it may also be likely that he may not be able to process his ‘feelings about the cat’ until after she has actually died. He may not be able to currently imagine how life will change (or how he will feel) when the cat is no longer with him, not until that time actually arrives. Some NDs can be very much in the present ‘here and now’ in this way?
And a small part of me wonders if he is depressed as symptoms of depression can sometimes manifest most in the mornings.
This impairment (in ‘imagination’ skills) may also hinder him from revising effectively and may be why he is playing with the cat rather than revising just before an exam. If he is anything like my ND sons, he will deal with the exam questions only when they are put in front of him, and he may not think about them at all beforehand, nor may he be too concerned about the result of the exams either. In this respect NDs can be refreshingly pragmatic; although I appreciate this is often far more painful a situation for us to helplessly watch, only wanting the best for them and for them to do well, while our ND teens may largely remain seemingly ‘blissfully’ unaware of the future and/or the potential consequences of their actions.
I am really sorry I have not offered much advice or solutions here, and I have only largely offered that, from what you have written, much of your son’s behaviour seems fairly typical for some NDs to me. I just hope to reassure you that, to me at least, your sons’ behaviours don’t really seem weird at all. I don’t think they are necessarily indication of your sons ‘level of functioning’ either- it just takes some NDs longer to get there, so try your best to not lose hope. Big hug.
My general rule of thumb, when things start hitting the fan, is to simplify- whatever and as much as you absolutely can as, more often than not, our ND teens start resisting and acting out (playing up) the very most when situations and demands simply become too complex for them to manage. The fact you mentioned that your son seems ‘less on top of it all’ this year than last could be indicative that he is simply not managing the greater demands that will have been placed upon him this (finals) year than last?
It sounds to me as if you are doing all you possibly can to help your son and this is all you can do, we are all only human. And whatever his exam results, you will cope and you will plan a new path accordingly if needs be- it’s what we parents do.
Very best of luck.
Actually that has helped a lot. I don't think I have been on the right wavelength at all. I had a plan and it went like this.
Get him organised in all aspects of his life and he will eventually do this as default and the organisational side will largely if imperfectly come right. Check. No actually he is 17 and a 1/2 and there's been no difference in organisation between now and age 8 .
Organise and support him at school, make sure he is working. He will pass through school with achieved or better and go on to university. Check.
He will study an applied degree in his special subject and even if it takes more years than normal, he will go on to become some kind of programmer or similar. Check.
He'll get a job because he's hardworking and capable even if he's a bit weird and his timekeeping is erratic. Check
So I have a big gap in my understanding. It had never occurred to me that he may never overcome his organisational extent and I thought it was just a matter of time before he largely got with it. Wrong.
It never occurred to me he would have trouble at school, that's not one of his ND issues. Wrong.
It never occurred to me, he might not get into university. Wrong.
It never occurred to me he might not hold down a full time job. Wrong again.
I also get what your saying about disassociation, that is exactly what we are seeing, in all areas actually, school, home and socially. He does nothing to change it and often bats away attempts to get him involved in anything social including within the family. Hence eventually you leave him alone to do his own thing.
I think he is frustrated because he has so many demands made on him at the moment. I don't think there is a day in the last 2 terms and holidays where he hasn't done homework or revision. Many holiday days he puts in 5 - 10 hours. It has been a terrible year for him and by extension me because I have had to do a couple of hundred hours of work with him to get him to where we are.
I have been thinking that this is behavioural when likely it isn't at all. And now that I am thinking bigger, I am thinking. Heck its only education, life is a much bigger place. If things don't go the way we envisaged we will get there somehow.
Its just very frustrating that he is not getting any help.
Do you know what happens to NT teens here?
If they cant learn and get degrees and then jobs etc, The process is this, as admitted by social welfare. They get forced into some kind of job or constantly rejected. They are subjected to all sorts of employment nonsense but not given meaningful skills training. If they get a job and get kicked out for whatever reason related to their disability, they go through the situation again for about 3 times and then they can apply for unemployment benefit with a temporary sickness waiver. This means that even if they have a long term disability they go back and forward to the doctor getting signed off and are still subjected to the educational activities of the department.
To be honest I hadn't ever thought that was an option and I still don't. We will find a way but I am really angry that they don't even get the dignity of a supported living allowance. They get the pleasure of failing repeatedly and being labelled unemployables.
My husband and I are both UK, NZ and Aussie citizens and we have more relatives in the UK than here by far. Aussie too so I think next step may be to look at moving countries depending on eligibility.
Anyway thanks for your help. It's made a big difference in how I am seeing things. In fact, feel quite indignant at the moment - like screw exams, I feel like telling him to kick back and not bother. Just one more to go so Mum better zip it.
Cheers
I think it can be a long hard lonely road living with a child on the spectrum, wherever you live really. And sadly, the truth is, there is very little help or support for HF NDs and/or their families here in the U.K either. We all eagerly read the NAS pages about the ‘ideal;’ what help we should be getting, what help should be out there- I’m just not sure how many of us (in reality) are actually living this ‘ideal’ though. Most of us are battling on largely (if not entirely) on our own.
But the fact that your son has already completed his O Levels and is nearly there with having sat his A Levels is still an utterly fantastic achievement- well done to you all!
Ah…plans…I used to have those too… (Sigh.) Actually, your plan sounds pretty great!
In terms of organisational skills- although it is true that some NDs may always need some extra help, it is also very true that our ND kids really do just need some extra time to get there sometimes. So please don’t give up hope, it is entirely possible (and highly likely) that your son may and will pleasantly surprise you in the years to come.
And it’s definitely not wrong to imagine that your son will and can go to university and hold down a full time job.
I don’t know about the education ‘plan’ bit. It is my understanding that, actually, being on the spectrum can have a significant impact on how best to access (and manage) education and work. But the fact that your son has got this far without any external support suggests to me that he has a great many strengths and is very academically capable, which is great and very promising!
This NAS site has lots of advice pages about educational needs, self-care, transitioning to adulthood, independent living etc. which you might want to have a read through?
Best of luck.