My son is now 10, but ever since the age of 3 I have known that something was not right with his behaviour and general emotional state. He has struggled for the past 6 years at school and on several occasions has nearly been expelled (only me fighting his corner that has kept him in). We received a diagnosis of ADHD 18 months ago after a 30 min appointment and my son was medicated - this helped but only a little so 6 months later they decided to swap his medication - again this helped for a short while but school is horrendous for him and now I fear they have given up on him. I am not convinced that ADHD is the correct diagnosis - his problems are:
Cannot establish or keep friendships / cannot cope in large group situations / unless he is being spoken to directly will be disruptive and make silly noises / cannot make eye contact with anyone when speaking to / has obsessions over various random things / when watching tv the other kids do not get a choice and he will watch the same programme for hours / needs something to fiddle with constantly / when he makes a decision that he wants to do something i.e an interest will talk about it to anyone and everyone for weeks and months / does not have regard for anyone else's feeling etc / cannot empathise with people / does not realise when he has done wrong.
Above are just some of the things he does, we have tried so many avenues through the school but just get palmed off and I am at my wits end as he is a very bright and loving kid who is just being labelled as a "naughty kid" and is currently 3 years behind at school - he is nearing the end of junior school and I worry that if he goes into secondary school unsupported then they will just write him off also...
Any advice would be greatly appreciated.
Written by
sar24
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I can understand that, you are able to give a good description of your son, although my only experience is with my own son who has aspergers/high functioning autism, everything you are saying is as if I had written it about my son. I got nowhere when my son was young he`s in his 30`s now, the answer I kept hearing was `we don`t label` which meant we didn`t get the expert help we so badly needed, this has affected the quality of his life and we can`t turn the clock back. You need to fight as hard as you can now, join the national autism society, there is a lot of information on the site to help you. Go straight back to your GP and ask for a referal, take with you all the information you have written and anything else to support your claim, drop the letter off at the Doctor`s before you keep your appointment so they have time to read it and have some answers for you when you go, he needs to be seen by a Doctor who specialises in autism, if you think you may have a very long wait, try asking the NAS for help, an option is to see someone privately, you`d have to pay for the report...it`s not an easy road, but don`t take no for an answer, I feel for you, the not-knowing makes it more difficult, once you have the right diagnosis you can get the right help...you`ve made this step, go and start your fight....please let us all know how you get on.
From your description it does sound like it could be something other than ADHD or possibly more than one condition affecting him.
It can be more challenging if your child is already in school but you can apply to your local council education authority to have a statement put in place for your child. There will be several forms to fill in & it can be helpful to have somebody else on hand to bounce ideas off when you complete them, once you have a statement in place it tells the school exactly what additional needs your child has & how they should meet them (i.e. does your child need someone to help with every class or just certain subjects, do they need help daily or just a couple of hours a week...)
If you do plan to revisit your GP/Paediatrician then make a diary over the week of typical behaviour patterns & your concerns. It will all help you with your argument for reassessment & getting support.
Like Eliza, it's amazing that what you describe about how your son functions is so familiar. My son too was never diagnosed which has made supporting him - now in his 20s - that much harder.
He was fortunate enough to get one particular teacher in high school who saw something in him, believed in him and encouraged him. and probably saved him because he was able to turn his life round at school.
Still, things are far from perfect so please do go on to seek the help he needs before it becomes even harder. Teenage years and new schools - very difficult stages of life and you need people in the system to fight his corner.
Try to spend a lot of time / attention making him experience / learn the things that are not seen in his behaviour. For example, sharing, listening to others, help others (or animals)... Do it slowly and step by step. Help him build up his self-confidence and at the same time show that these other ways of behaviour are also part of life and can be nice. You have to be loving, but also strict and clear that some things cannot be accepted. This won't be done by others (only parents could spend the time, love and patience) and it's worth doing it now, because if he gets older it will be more and more difficult to change these patterns. It requires a huge effort, but a mother can do it!
I feel you anxiety. My son is dyslexic has ADHD and we are awaiting the results of tests for Aspergers. He is also 10.
I basically told my doctor that my son would end up in care if he did not refer him to a paediatrician? I know that sounds extreme but I was at a very low point.
I am no expert but I have been led to believe that children with ADHD often have co morbid diagnosis of other conditions such as Aspergers, autism, dyslexia, dyspraxia and OCD. Google ADHD solutions,they are based in Leicester and have a brilliant website which may help. Also contact your local parent partnership service, they can advise you on statements etc but also support you at school meetings. Don't give up, you have to see this through and we will all be thinking of you.
My sons were late diagnosis Asbergers , one then diagnosed with ADHD when young now has ADD. Now fightening for PDA. Your sons issues fit in perfectly for PDA.
There is a questionairre, one of mine the role play is he thinks he is a teacher, the other the role play is Role Play avoidance, he has a masters in it!!.
Petition plus websites to check out .Read the blog. Pathological Demand Avoidance , my daughter is not naughty, see if it rings any bells. It ticked so many boxes with me.
Totally agree with comorbid conditions like dyspraxia, dyscalculia , epilepsy .
CAMHS so many are failing the Asbergers . Clueless.
You can have both coexisting........My younger son ( Both my now adult sons are on the Autistic Spectrum/High Functioning Aspergers Syndrome) has ADD, Attention Deficit Disorder but not the Hyperactivity part of it, along with his Aspergers.
My own two sons were both diagnosed through CAMHS and my own personal experience with them both times was excellent, it was the GP i had problems with initially. I had to be persistent and sought second opinions from another GP in the practice.
Hi from the things you listed it sounds a lot more like aspergers than ADHD. I have ADHD and I was completely different as a child. Still am. The lack of empathy well from my experience with ADHD it's more the other way having a lot of empathy. was always that way. But with ADHD cos we feel emotions so strongly and can get hurt we can come across as lacking empathy if we get upset or angry. So I'd go with Aspergers they are similar but different.
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Advice please
I would love to know how I go about getting compensation for my sons ruined life. He is 23 and just got a diagnosis of Autism.
Advice needed 
Discouraged and disenchanted....
What a waste!
