DS is eccentric - should we just embrace it?

[yetmorerain]

DS is 7 and in year 2. He had some medical issues aged about 5 which were incorrectly diagnosed as behavioural due to our parenting and resulted in an ed psych assessment confirming an IQ in the top 1%. However a multi disciplinary team decided he had no signs of ASD based on his interacting very well with them (he always interacts well with adults on a 1 to 1 basis) and his NQT at school not reporting any concerns. They did not carry out any specific tests other than the IQ test and did not observe him in school. School still feel he is achieving well despite achieving below average results in writing and no correlation with IQ. The medical issues were later correctly diagnosed and treated and all accusations against us dropped. My DH would never willingly go near another so called professional again as they nearly destroyed the whole family and I would never use the NHS.

However DS remains very eccentric. He always has obsessions when he cannot speak of any other subject, then after a few months or a year it changes to a new subject. This subject will take over everything so he will play, make things or read about this subject and even watch it on TV. Eating, dressing or toileting do not occur with out reminders using timer as warning. My DB and DF have always been much the same so I dont find it as unusual as DH does but we find it tiring to parent and the contrast with his siblings is huge. Example I ask do you want some pudding. His reply do you know that jupiters 3rd moon.....

We dont know how or if he manages to be distracted from the obsessions at school although he always carries something hidden as a reminder ie a planet or dinosaur to school. School are not keen to discuss anything but I am unsure if this is because they know they cant get him to achieve potential or if they believe he is eccentric but that it is our fault. In the last term he has made a friend for the first time and had a couple of play dates which has been the biggest step forward so far and has been a great relief to me. Generally the children and especially their parents find him very annoying. His siblings are still to start school but have no characteristics of ASD and demonstrate empathy and can make everyday conversations.

Is there any benefit to my trying to do anything? He is not refusing to go to school although is reluctant as is always frantically busy at home. Could the obsessions, challenging behaviour and poor social interaction just be due to high IQ, if he can presumably conform at school then should it gradually get easier? I am just so happy that he has a friend at last that I am not even sure that I should be posting as that was what I had hoped for.

Sounds like there is still more going on than has been diagnosed...have you contacted the NAS for advice?

Hi, this sounds very similar to my son. After many suggestions that he had Aspergers, we took him to a Clinical Psychologist who was very clear that he did not have it but did have verbal IQ in top 1%. I would recommend a book called Misdiagnosis of Gifted Kids: books.google.co.uk/books?id=NQrtt-peg5AC&printsec=frontcover&source=gbs_atb#v=onepage&q&f=false

In it, it suggests that there may be a link between giftedness and Aspergers and that the two may be on a continuum. My son is also very eccentric and can monologue about trains and YuGiOh cards. He has been bullied and called weird and I am conscious of people stopping in their tracks and staring at him as he can sound like a mini professor. Another interesting point that the book makes is that when gifted kids are with other kids like themselves, their interactions are more normal. He has a new friend who can monologue about computers and they get on really well. LOL!

I worry about him all the time and my current thinking is that he does actually have some autistic traits and is probably higher up on the autistic spectrum than your average but he does not reach the level needed for a dx of Aspergers. He has very mature empathy and is happy with a change of routines etc.

He does actually have dyslexia but this can be masked in a gifted child because they find ways of compensating. I think these conditions, along with ADHD, can all somehow be related and cross over which makes sense. Have you looked up Dabrowski's Over-excitabilities? These fit the bill as well and may explain some of the behaviour.

Acting has been a great outlet for my son and I am hoping that as he gets higher up the school, he may be able to join a debating club - this would be right up his street! I have currently got him on fish oils in an attempt to calm him down a bit. People have found him very annoying too! And yes, he needs reminding to go to the loo and to eat and to tie his laces!

No choice but to embrace!!!! Good luck!

"DS is 7 and in year 2. He had some medical issues aged about 5 which were incorrectly diagnosed as behavioural due to our parenting and resulted in an ed psych assessment confirming an IQ in the top 1%. However a multi disciplinary team decided he had no signs of ASD based on his interacting very well with them (he always interacts well with adults on a 1 to 1 basis) and his NQT at school not reporting any concerns".

Such stories never fail to shock me. Was it CAMHS that you originally saw; some of them can damage families and can be worse than useless. Also ASD also is not their main area of expertise.

In Y3 as well he will be in Junior school therefore off their direct hands. With now only around 6 weeks to go before the start of the summer holidays they are clearly not bothered now and actually never have been.

Do you think your son may be somewhere on the autistic spectrum?. Have you considered that possibility; it cannot be ruled out. (Your DB and DF may also be on the autistic spectrum as well).

Schools more often than not do not notice any real concerns as they are simply not trained to spot any child with additional needs particularly in those children who conform at school, or try to. Such children often go unnoticed or ignored and he is clearly finding school a huge problem socially Other children find him annoying; this is clearly a child who has difficulties in reading social cues.

His one friend may eventually tire of your son; children can be cruel to others who appear to act very "different" to them.

I would pay and go private to seek out the advices of a developmental paediatrician and go all out to seek a proper diagnosis. This could then open doors that will otherwise remain closed.

Knowledge after all is power; better to have knowledge than to be in the dark and with its knock on effect on family life. He may well start to refuse to go to school. School is not going to get any easier for your son the further up the school system because he will not be able to read the unwritten social cues properly. That will have a knock on effect on his learning; he's still going to school currently but that may not always be the case. The surest way to get his needs at school met is for you to become a squeaky wheel and fight tooth and nail to get his additional needs there fully met.

You are after all, his best - and only - advocate.

Would also suggest you post on the Special Needs; Children part of this website as that particular forum as well receives far more daily traffic than this one does.

I would suggest you read 'misdiagnosis and dual diagnosis of gifted children'. It won't really help, but it will crystallise your thoughts!

Your Ds sounds like mine.

Did they do a full psycho-ed evaluation, or just wechsler/ wiat? Did they look for co-morbids, or just ignore the issue because he reacts well to 1-1?

Was his wechsler testing 99th across the board? Or was he 99.9th in half of the test, and around average on others? Spiky results? Which still meant gifted overall, but lower in, for example, working memory or processing, and high in verbal reasoning etc?

No one bothered to dx Ds until y5, tbh. We always accepted he was quirky and impossible to motivate unless his interest was piqued, in which case he was unstoppable. Because he was obviously bright and brilliant 1-1 (but crap at random boring staying on task in uninteresting class work) every school he was in let it slide, as they knew he was bright enough to keep up.

Over the years, people have suggested pretty much every sn known to man, as well as 'just gifted'. I still don't know, really, he's still just Ds, but a full pyscho- ed eval just before his tenth birthday said gifted with ADHD with aspergers traits and anxieties and phobias (he also has continence issues as he just won't/ can't be bothered to stop what he is doing and get himself to the washroom. This is possibly explained by the hyper focus aspects of ADHD, or whatever they call hyper focus in gifted kids.... Ummmmm, forgotten!)

So, I'm still not completely convinced, but it means that yes, he's bright, and yes, he has quirks....

Gifted kids can have aspergers. Gifted kids can be nt. sometimes gifted looks like aspergers. Sometimes kids with aspergers are not gifted... Sensory difficulties can be explained by ASD, or by overexcitabilities in gifted kids... There is a lot of overlap, and it is very difficult to unpick!

I have absolutely no idea whether this is remotely useful, but I would deffo the read the book I mentioned before I went all stream of consciousness on you.

Given he's experiencing difficulties in so many aspects of day to day life, I think you do need to pursue this further. I appreciate that you have had a grim time so far with the professionals. Going private may help restore more of a feeling of equality to transactions. At the very least, I think that the fact he tested as 99th percentile IQ but is underachieving at school needs looking into further.

Thornbury ? I have not tried NAS since the misdiagnosis 2 years ago so I will try again thanks.

Niceweather ? thanks for this. I would love my DS to do acting but at the moment he still wont do any clubs or activities as he wont follow any structure or be told what to do although appears to manage school. I have never heard of Dabrowski's Over-excitabilities so will look that up. There is no doubt DS and DB and DF have some asperger type traits but unsure if they are just gifted. I had heard of the misdiagnosis book and actually tried to order it at library without success so I will buy a copy now. How old is your DS? Has he become more able to conform or more obviously different. How do handle non stop discussion of the latest obsession, do you partake at length or glaze over or manage to distract? Presume my DS has dyslexia too as digit span was lower than all other scores and he still reverses things but as he read fluently very early I see little hope of a diagnosis (and certainly no help at school) and as assume it is dyslexia we help accordingly. Failed with fish oils as DS is on 4 prescription medications a day that have to have priority and he is now refusing the fish oils but I havent noticed a difference since he stopped.

Attila ? thanks for this. I will pm you. Things will have to get considerably worse such as total school refusal before my DH will agree even to go private for assessment after our previous experience. Then we would need a different school as ours would not help even with a diagnosis. Despite being a state school any children with issues appear to be managed out rather than supported. From a baby we have always known he was different ie knowing all numbers and letters at 18 months but I used to say just like DF or DB. Now I know they have many autistic traits but no idea if they would really fit a criteria for diagnosis or are just gifted.

madwoman ? thanks for this ? yes i will buy this book. Do you know if it is correct that it cannot be ordered via library. No they only did WISC 1V despite telling us they were doing a full ASD assessment they never did anything else. Results were spiky but only digit span was below 10. Comprehension was highest and they advised ASD children generally do not have this as their highest score. Everything in your post applies to DS but dont think a diagnosis such as yours would help us at the moment as we know he has asperger type traits and school would do nothing different if told that. Situation may change if he becomes more eccentric or unhappy at the moment he is fairly oblivious.

Thelight ? thanks but as explained to attila my DH wont go near professionals just because DS is not achieving his potential. Our family was nearly destroyed, literally and that is more important, it is impossible to imagine unless you have been through it and I wouldnt wish it on anyone. I am sure that even if DS achieved no GCSEs he would do a PHD in his latest obsession. My DB taught himself at home as he refused to go to school much of the time and this was before the internet and still got straight A?s at A level and went on to do a PHD.

Thank you all for your suggestions. I am interested in how you think it progresses ? will these type of eccentricities become more obvious so that we may need to be prepared to seek help before secondary school or choose a certain type of secondary school?

Hi again,
Totally agree with Mad Woman when she says "There is a lot of overlap, and it is very difficult to unpick!" I can find myself consumed with it at times. I go around in circles but at the end of the day I guess I have to defer to what the Clinical Psychologist told us which was that he did not have Aspergers and that the obsessions were more to do with a willingness to explore something in depth. He also recommended that we discuss with him the social side of it which we have now done. He is 12 by the way.

When I think about it, some of the difficult traits can be turned around... YuGiOh obsession developed into him making and selling his own comic. Train obsession developed into him designing a model steam train. Listening to Sherlock Holmes every night has led to him starting his own novel. He also wanted to walk around with a cane but we told him that it was not a good idea!! The talking led him to be picked to do a reading at school carol service. If you asked him to talk for 5 minutes on a given subject, he could do it - he could end up being a brilliant secondhand car salesman! On the other hand, I shudder when he starts a monologue about 4.2.4 standard class British Rail tank engines with a complete stranger! He has been told not to!

Like your son, he had terrible difficulties in following structure - we were asked to leave tennis lessons!!! I would really recommend the acting - it's not formal or structured and there are quite a few very quirky children there! It's the closest he's come to fitting in anywhere. His current acting classes involve all the children inventing their own plays and then performing them once a term (definitely not Shakespeare but great for creative thinkers).

Is your son happy at the moment? I found a secondhand book about "eccentrics" and one characteristic is that they are generally happy. I would definitely say that my son is happy. It has however been hard for him to find like-minded kids. He has been guilty and still is guilty of hanging out with adults at playtime. The other bright children that I can think of tend to be far more reserved and sensible than my son.

Another thing to Google would "twice exceptional" which means children that are G&T and have a learning disability like dyslexia - the two can cancel each other out and mask one another, and result in eccentric behaviour. Also look up "stealth dyslexia". I also wondered if the excessive talking was partly due to his difficulties in getting things down on paper so he could only express his knowledge through his talking.

You could also try speaking to the NAGC -they were the ones that recommended the Misdiagnosis book.

Hi, we've moved this into Special Needs: Children, thanks.

After the hell the authorities put me through in 2010 & 2011 I WOULD go private quietly in the summer holidays (so no need to explain any absences to school!). As a long parent we needed a full course of private family therapy to recover from the nightmare we were put through! I would never have believed such evil was possible if I hadn't lived through it myself!

My reason being that if I could get a formal medical diagnosis with someone "esteemed" in the field of neurodevelopment, I could keep it in my back pocket to cover my arse in future IF any further issues cropped up such as school refusal due to bullying when he is a teen. You need to be able to step in and say - "this is the problem so look here for the solutions" to some of the arrogant numpties involved in education today.

To keep that IQ satisfied look to do extension activities to school topics at hom to retain his interest. DS spend hours googling topics that have caught his attention as he wants to know more than they are shown at school, my book budget is also blown every month.

I too have lost all faith in the system to do the right thing and nowadays look over my shoulder before doing anything. Protecting my family unit is my foremost priority, whereas I used to take it for granted.

asychronous development...this is one of the MANY things I have googled in the past few weeks after receiving very basic info from full cognitive assessment from ep which also mentioned below low average emotional literacy, aparently my ds is working nowhere near what he is capable of but the fact he finds school boring and tends to use avoidance techniques when it comes to reading/writing has a lot to do with it , has just been put on the waiting list for asd assessment.

He sounds very similar to my dd1 (8) , we do have a dx of Aspergers, dd1 communicates well with adults and not too badly with children but finds fitting in a bit tricky. She has a high IQ too. She hasn't had much support at school (just a understanding teacher). I think we were very lucky to get a dx without too much of a fight (just took a while), she was diagnosed when she was 4.

Would you think about getting someone who specialises in HFA / AS to work with your DS privately? We do ABA but with a much younger more severe child. I wonder if introducing someone such as an ABA bod as a 'coach' who could help modify behaviour e.g. obsessions and teach independent skills in a ASD friendly way might be a practical way forward even though it would not lead to a diagnosis. If a child does not 'get' the social norms then they can be taught and many ABA providers will do this in a sort of mentor / coaching style rather than the more teacher based style you would use for a younger child. They could also work on the daily living skills etc.

I am not sure a diagnosis would bring much in the way of help for such a HF child when even more severe ones get very little. I would probably put my money into more practical support, unless you can afford both the diagnosis and the therapy privately.

Looking for, or even setting up, your own social groups could help. e.g. I know children who go to a Pokemon / YuGiOh club; dungeons and dragons; and something involving some sort of very expensive battle figures. Our local NAS run a youth group for HFA/AS and NAS branches / autism charities will often help finance groups to get up and running if they have a parent willing to do the work

I've got two boys on the spectrum (although they don't diagnose Aspergers in these parts any more, only ASD). DS1 (7) had an IQ test last year in which he came in the top half percent (99.6, 99.6 and 99.8 centiles) for three of the four categories, but only on the 84th centile for verbal reasoning and DS2 (5) hasn't had a formal IQ test but also seems pretty bright. They're both fairly happy, quirky, slightly obsessive, argumentative and very lively boys who are doing just a bit above average at a mainstream school.

The diagnosis has got them some understanding of their quirks, but the things that have helped the most have been what ABA we could afford at home and a weekly visit to a specialist (private) paediatric OT who also gave us exercises to do daily which helped with handwriting and gross motor skills. I would say that the diagnosis itself has helped very little since they would have had a lot of the same support without it. I also get fed up with the low expectations some teachers have of them, they seem quite happy for them just to tick along without really trying to push or motivate them at all. The IQ test helped hugely with that since DS1 was put up from the bottom (!) table in his class to the second from top and started to sit up and take an interest.

I have to say though, that their quirks and obsessions make me laugh - like the ladybird obsession DS2 had which meant we had them all over the house, or the 'battles' DS1 has with a hundred carefully sketched out figures on tiny bits of paper in strategic positions, or finding a suspension bridge made out of bits of chain, wood and plasticine going across the kitchen table (it stayed there for about a week, we had to eat off our laps!). It makes for a very interesting home life!

Thanks for all these responses. Lots more to think about.

Niceweather - What type of acting classes do you use as all the ones around here dont seem suitable but ones I went to as a child would have been ideal as very creative. What age did your DS manage to start these classes? Yes always presumed DS had stealth dyslexia as it runs in the family and his digit span was his lowest WISC score but unlikely to be diagnosed when his reading is so far ahead. Yes he tends to mix more with children 4 to 6 years older by choice. How do you cope with the constant conversation about a subject you may find extremely boring as I find it hard not to glaze over.

Bochead - were you under the same team as us? I totally sympathize. Agree that protecting the family is key.

Thanks everyone else too. How would i find someone who specializes in ABA?

Hi,

The acting lessons are at our local Art Centre. He started on some different ones when he was 5 or 6. They were run by a nearby Youth Theatre and again, were very unstructured. He had to give up karate, tennis and football where he would do stunt dives at the end of the pitch as the other kids chased the ball.

My son's reading age is above average but at the last report from Dyslexia Research Trust, it was still 7 years behind what you would expect from intelligence. There are different ways of assessing reading.... my son's reading comprehension is good but his phonic de-coding is poor. His vocabulary is excellent but he struggles with unusual new words although once he knows them, he can remember them. Like your son, he recognised shop signs very very early and he learnt his alphabet early and easily but this didn't then translate into early reading as you might have expected. He learnt to read at about the average age so no problem would have been picked up. This doesn't mean that he doesn't have dyslexia though albeit mild/moderate rather than severe.

The CP advised us to discuss the talking and monologues with him. He does now understand that people find it boring but he still does it to some extent. If someone shows a slight interest in given subject then that will be the green light. Once he starts, it's hard to stop him!! He actually joked about it a few days ago - he said that one of the teachers had told him how intelligent he was - I asked him what prompted this comment and his answer was that he had given a monologue about trains! I was horrified but then he grinned and revealed it to be a joke which must show that he is becoming aware! But, I asked him about an event he had attended last weekend and he didn't answer, but maneuvered the conversation straight onto trains. Sometimes we just have to tell him to STOP! Even his grandad who helped fuel the train obsession tells him to STOP!

You could start a thread asking for ABA recommendations in your area. Lots of us on here do it. There is also a Yahoo ABA UK site you can post on - although you are more likely to get professionals pitching for business on there. Always try and meet parents using a provider and get proper recommendations as it is unregulated and there are dubious practitioners out there. the good ones usually have a waiting list and don't need to tie you into contracts so avoid anyone who wants you to commit for months at a time.
We use Autism Partnership who have people in Leeds, Cheshire and London