Please or to access all these features

SN children

Here are some suggested organisations that offer expert advice on special needs.

Please help, son refused asd assessment, now what???

5 replies

exmrs · 28/06/2013 10:12

Will keep this brief as I can but desperately need help as feel everything getting too much at the minute.

Son 6 years old , was assessed for asd at 3 years old, scored some points but not enough to diagnose.
Have had loads of issues with son and cant take him hardly anywhere as he cant cope.
School know he doesn't want friends and wanders off from kids when he had enough but think its just his personality.

Brief summary of his problems

Son doesn't sleep and never has done, he wakes constantly
Very limited to what he will eat, will not try new foods again this has been for 6 years
Hates change and cries for hours/days when something upsets him.
Will go to sleep crying about something and carry on when awake again.

Just a couple of examples I got rid of an old cabinet and when he noticed he kicked off big time all day and now when ever I have to get rid of something in the house I have to bring it up with son and make him aware of new items coming into the house.
Son notices anything different immediately
He has excellent memory and can remember when I signed my tenancy in sep last year what the lady was wearing and what she was called.

His language very formal and he sees himself as an adult.
He talks to adults no problem and in the school playground he talks to the mums and ignores the children.

He argues constantly with someone if he disagrees and does not let things drop. He holds grudges forever and will bring the same argument up years after.

He likes to tell people what they are doing is wrong if he considers it wrong (inc adults) He cant help himself he doesn't let anything drop.

School did have him on school action for a few things but taken off without telling me.

They do know he doesn't have friends but said he doesn't want friends and basically wont do anything until he is unhappy about it.

They have said his language is very formal and he asks questions which no other child would ask.

He worries about a lot of things but school have said he has stopped doing this at school (he still does at home)

e.g he asked if he were going to secondary school so I said yes when you are older and he cried saying he didn't want to as he wouldn't know where to go. I told him he would get a map and be shown around but he wants the map to look at now. He also said how will I carry everything? I told him he will have a locker but he cried saying how do I work it? I said you will have a key and his response which way do I turn it to open it? he actually wanted me to show him a key and tell him how which way to open a locker. he needs to know everything in advance.

He has argued with every kid in our area as we live in maisonettes and finds it hard living here as we constantly have to walk past peoples houses on balconies and he comments all the time to people about them doing something wrong.

He hates going to family members houses and hates people coming in our house so he goes and hides.

This is what speech therapist has put in his report when he referred him to be assessed again.

Son has targets to detect rhymes and idioms consistently.
Also has target to understand before and after concepts.

*** finds unstructured play challenging and feels he doesn't know how to play so school finally being told to help him at playtime using another child to model play.

listens well when interested but is easily sidetracked if he doesn't understand the question. He needs regular prompts to keep conversation on track. Language is very formal and chatty with adults.

If he doesn't understand a question he will pick one word out of question and reel off everything he knows about that one word.

Has some awareness of emotions but only simple ones like happy/sad others were described as weird.

Also he states when we came to clinic son hid behind a wall as a child was in waiting room and son doesn't like interacting with children.

Anyway Speech therapist referred him to be assessed again as lots of issues and also to cahms as he has a lot of anxieties about school and just worrying in general.

Today received letter saying not enough information to be assessed again and I have a feeling its because of school saying hes fine there and im guessing I ll receive a letter saying he cant be referred to cahms as not enough anxiety.

I just don't know what to do as if I treat him as normal then he ends up arguing with kids and he kicks off big time.

The speech therapist feels that in order for him to be assessed someone needs to spend a lot of time with him as he isn't severe its only when you talk to him that's things are said and he manages to almost fit in at school as he keeps to himself.

Can anyone tell me does any of this sound asd or something else? and can I appeal their decision not to assess him?

OP posts:
OneInEight · 28/06/2013 10:21

Go to your GP and ask for another referral. Perhaps print out what you have written here as the list of causes of concern. Referrals for my sons were rejected twice by the community paediatrician and once by CAMHS before being seen. They both now have a diagnosis for Aspergers. Sadly, you have to be very persistent to get seen.

bochead · 28/06/2013 13:17

Write a letter back asking what information they feel they need in order to be able to assess that they currently lack? Offer to do what you can to supply it.

Go back to the GP and INSIST on an appointment with a developmental pead in order to address your suspicions that your child has a neurological disorder.

Write to the school asking formally what support they are putting in place to address your child's social skills needs? Remind them that this is just as a much a requirement of theirs as is the academic curriculum. Ask that they produce an IEP so that your child's progress in this area can be measured. (Clue - no friends means what exactly are they doing to help him make friends, how does he cope in group work, how can he be helped to deal with "rule breaking" etc, etc). Ask too for an EP visit to the school. Do say that you expect a response by the end of term.

Go to the IPSEA website and look at the model letters for statement applications. You have nothing to lose by applying & a parental application forces the school to look at what they are doing to help instead of just fobbing Mum off.

Do not give up. Teachers are not doctors, and sadly are not trained to recognise every disability under the sun. So their failure to always spot the signs of a disability should not be regarded as their fault iyswim. Stay positive with them, but be firm.

It took 4 years for my lad to get a diagnosis. 3 years of that was spent with him unable to cope, being bounced from school to school while tptb fobbed me off. We got there in the end though & the key difference it's made has been to my lad's self esteem as previously he'd internalised all the "naughty" comments.

exmrs · 28/06/2013 18:56

Thank you for the replies there are some things I've not thought of but seem obvious now x

OP posts:
boy1 · 29/06/2013 00:11

hi exmrs, dont even bother going to your gp. you will get nowhere! they just dont get it. I too have a boy of six who has apecial needs. has a full statement of need at school but no diagnosis as such, ask the school to help you with a referral to your local childrens services team or do it yourself and then get the school to join in with that. You then could get EMS teachers to come observe your child at school. Its a bloody nightmare getting help. I had a really great nursery which to be honest kick started what I knew but chose to ignore. Dont give up and keep going at em. We only now are at a better place because of the great school we have and the support of the local services, You must utilise them. they can put you in touch with all sorts of people. Your son sounds a lot like mine. Very adult behaviour but at the same time not being able to connect with kids of his own age or similar. Dont give in. its really hard going. but believe me its worth it in the end. It may never be perfect but it can be a whole lot better x

MumuDeLulu · 30/06/2013 14:23

Sorry to hear your GP is pants, boy1. Any others near you?

Don't want OP to think they're all like that: ours is amazing (proper family dr, doesn't claim expertise abt ASD so listens to patients / parents properly). Small practice, limited staff, no extra diplomas etc, tatty building, old-fashioned everything... All doesn't matter, cos they take you seriously.

New posts on this thread. Refresh page