Should I talk to our GP about this?

[Amandoh]

My DS2 is 13 and was diagnosed with a non-specific learning disability just before starting secondary school. He had been tested for dyslexia as he'd complained when he was younger that the numbers and letters "moved" when he read. The school he was attending at the time said they didn't test for dyslexia until the pupils were 11 and I assumed this was across the board so when he moved to a new school when he was 9 I didn't ask them to test. By then though he had stopped complaining of moving numbers and letters anyway so I thought things had improved but he was still incredibly slow at reading and writing.

When his teacher mentioned how slowly he worked I told him about my earlier worries and he suggested tests for dyslexia. He was tested and the result was negative for dyslexia but the report said he had a non-specific learning disablility. I asked if they could investigate further but was told that it would be pointless as he'd probably be called "high achieving" due to him being very good at science and maths. Apparently he was the fastest in the class at answering mental arithmatic questions and regularly stunned the teacher with his memory for numbers.

Fast forward a couple of years and I'm starting to see things that worry me. I have spoken to someone in his senior school about this and they just tested him for dyslexia. Again, he tested negative. I don't know why they bothered really. I don't think I was listened to as I'd said he'd been tested and wasn't dyslexic yet when I went back they said something like "Well the good news is it wasn't what you thought it might be. He's not dyslexic." I said I know it's not dyslexia but something isn't right. He's very immature for his age and he doesn't seem to have matured much since being about 8 or 9. I really notice when he's with his friends how much more mature they are than him. Sometimes it looks like they just tolerate him. They'll smile at his silliness for a while but eventually can't be bothered. I said this at the school but have heard nothing back.

I wonder now if I should see our GP. DS2 seems not to have any emotions and looks puzzled when someone is upset. If I died he'd say it was sad but he wouldn't feel it iyswim. Our dog was knocked over and killed by a car and he didn't react at all. Also, he has a very limited vocabulary yet DS1 doesn't. DS2 will watch a film but not be able to explain the storyline to you afterwards. It's as if the world is going on around him and he's participating but with blinkers on or something.

My first thought of course is that he may have aspergers which is why I now think that perhaps talking to our GP is my best move. But, what if it is? If he's "officially" diagnosed will this hinder him in the future? For example would he have to tell prospective employers? And does diagnosing help anyway? What help could we get?

So, after that long winded post, does anyone have any thoughts, advice or experience of a similar situation?

[Amandoh]

I'd just like to add that all his teachers praise his behaviour in class and his effort grades are all excellent but every teacher has said that he works very slowly and rarely finishes his work in class. They have all watched him to make sure he's not talking or daydreaming and he isn't. He's just very slow.

Just as an example of what I mean when I say he's participating in the world but with blinkers on this is a conversation we had last year - He told me they were learning about the Victorians so I asked why they were called Victorians and he didn't know. I said it was because their Queen was Queen Victoria. "Oh, right" he said. I asked what he thought we were called now and asked what our Queen was called and he said "I thought we had a King". I said our Queen was Queen Elizabeth 2nd and did he think we were the 2nd era of Elizabethans or were we Windsors and he said "I thought we were lesbians".

I can see the humour in what he said but he was serious. I then had to explain what a lesbian was as he didn't know. He really ought to have known at 12 and he certainly should have known we have a Queen. I'm regularly surprised at every day things he doesn't know. I asked him what he was learning in geography recently and he said he wasn't sure if he did geography. I said that of course he did and he said "Oh yes. I have a book that says geography on the front so I must do".

[greenpilot]

I would definitely speak to your GP about this. It's sad that the various schools have fobbed you off for so long and at his age, you want to move fairly quickly to get as much support as you need.

Diagnosis often takes a long time and it's the key to getting support. He could get support in class for prompting or keeping him focused, or to help him with social interaction.

Is he on School Action or School Action Plus? If he is rarely finishing his work at school, is that hindering his progress? Does the school offer any support with his social skills? He may need a statement to get the full amount of support he needs.

Have you also looked at Irlen Syndrome? If he's still complaining about words moving, coloured lenses may help. It's often a co-morbid with Aspergers.

[Amandoh]

Greenpilot - Thank you for replying.

I think schools overlook him as on paper he's a model student. His effort grades are all excellent and he's hitting target grades and exceeding them in some subjects. He doesn't talk or mess around in class and has never been involved in any sort of trouble. This has been the case all through his school years. I do think working slowly and not finishing must hinder his work but he attends a homework club so I think any work not completed in class is finished there. My concern now is how he will cope with exams as he turns 14 this year and GCSEs are on the horizon.

I hadn't heard of School Action or School Action Plus and I assume the school would inform me if DS2 was a part of the scheme so I think I can safely say he's not a part of it. The English teacher told me that he has helpers in class assigned to certain students and they help DS2 but they're not officially assigned to him. He's not losing focus, he's just incredibly slow so I'm not sure how they help him really. I do ask DS2 questions about his work in class but honestly, I might as well be asking someone in Timbuktu. He just looks baffled. It's really becoming apparent that so much of life is happening around him rather than to him or with him being fully involved.

I think we can rule out Irlen Syndrome as I asked him about moving numbers and letters and he said they don't move and couldn't remember complaining about it when he was younger. I don't think he could have been making it up as he would have been about 5 or 6 at the time and far too young to have come up with that as an excuse to get out of home reading or homework. Can these things improve on their own?

I don't know whether he's eligible for a statement as I understand that if a child is "Non-specific" then they're not entitled to one. I was interested to read what you wrote about help at school for social skills as I think he'd really benefit if such a thing was available at his school. Would he need a statement to get the help though? He is completely socially enept. If I stop to chat to a neighbour he'll say, after just a minute, "This is boring. Can I have the keys?" and last year in The Disney Store I'd taken a small ball away from DS3 and carried it to the till but didn't put it on the counter as I hadn't realised I still had it. The shop assistant asked if I was going to pay for it and I explained I'd forgotten I was still holding it and that no I didn't want it. DS2 said in all seriousness "I think my mum was trying to shoplift" and looked at me very oddly when I laughed.

Reading back through what I've written I see now that this isn't really a school problem, although the slow work needs addressing, and more a social problem. It's all coming to a head now that he's getting older and I obviously need to see my GP soon. If he is officially diagnosed with something will this hinder him in later life?

[Amandoh]

*Inept rather.

[greenpilot]

I'm afraid that from what you've written, it sounds like his various schools have failed to acknowledge the extent of your son's difficulties.

It is not true that if a child is 'non-specific' then they are not entitled to a statement. I suspect that the diagnosis was deliberately worded in that way to avoid providing support (because support costs money).

If there are helpers in class allocated to other students (through their statements), those students are in need of that help and it should not be shared with your son. Sorry if that sounds harsh, but students are generally given the minimal amount of support they need and there is unlikely to be 'surplus' to be available for other children. If your son actually needs help to get through lessons, he should be assessed and provided with his own support.

I would not be surprised if your son is on School Action/+ if he already needs that extra help. I also would not be surprised if the school has not been bothered to tell you. I would make an appointment with the SENCO for more information about what support is available within the school - see the booklet in the link for a model letter.

I would recommend you download the ACE booklet on getting extra help in schools. There are statutory ways the school should have gone about doing this and it doesn't sound like they've been fulfilling their duty. I'm afraid that schools are often not as proactive as parents would expect in getting extra support and parents have to do a lot of legwork and fighting with the local authority to get support in place.

ACE has a support helpline for more information, you can also try IPSEA, though you'll have to be persistent.

I would also suggest that you look at the SEN Code of Practice. It describes the graduated approach to SEN and the whole legal framework around SEN. Don't let the school fob you off about their way of doing things. It also makes it clear that social and communication difficulties are just as important as problems with cognition and learning. A problem with social learning is a school problem. It is no good for a child to get excellent grades if they cannot function in everyday life/the workplace due to their lack of social skills.

Your child may be managing to achieve target grades, but if he is 'high achieving' then he may still be performing below expectations based on his underlying intelligence. Did he do cognitive tests as part of his EP assessment? Were there IQ scores and did he have a spiky profile (some low scores/some high scores)?

Regarding the stigma of a diagnosis - I personally would always say it is better to get a diagnosis than not (although not everyone agrees). I have known too many people who have been diagnosed late and missed out on the opportunity to get support or recognition for their difficulties and have suffered greatly (from bullying or mental health problems) as a result.

There may well be employers who would think twice about taking on someone who has a diagnosis. But it sounds like your son would make his social problems clear during an interview situation anyway, or at least very early on in the workplace. It's far better to have a diagnosis to explain that behaviour than for people to think he's just rude or odd. The Adult Autism Strategy and Disability Discrimination Act will also offer him some protection.

Obviously your son has not been diagnosed and I don't want to prejudge the outcome of any diagnostic assessment. But it definitely sounds like there is an underlying issue with social skills and it fits with my own knowledge of AS.

[Amandoh]

Thank you again for taking the time to reply. You've been very informative and helpful.

With school being closed now until September I have the opportunity to "swot up" on what help is available and to see our GP about who we should talk to in the hope of getting DS2 a full dianoses. From what you say it's a long process so I'm keen to at least get the ball rolling during the holiday.

I have a meeting scheduled at the school on Sep 3rd with DS2s head of year for his new class so I intend to be less wishy washy than I have been previously. It would be good to be able to say that someone with some medical authority thinks that there is a problem and that it's being investigated rather than just me saying "I think something's not quite right."

Thank you again for taking the time to reply and also for the links which I will look at now and print.

[greenpilot]

Good luck Amandoh - let us know how you get on.

You can order the SEN COP from the publication centre: telephone 0845 6022260 or email [email protected], quoting the DCSF reference number DCSF 581/2001. It's quite a hefty tome to print out!

[Amandoh]

Thanks for the tip as to the size of the file. My Adobe seems not to be working so I'll ask DP to have a look when he gets home. I just get a blank screen with a little box with a clickable "OK" in it. Not sure what I'm clicking "OK" to but nothing happens anyway.

I will let you know how we get on at the meeting in September and whether or not I make any headway before then. Thank you again for all your advice.