Aspergers/ASD support thread

fsdss

sarah - how have you got on today?

you have the paediatrician, cahms and ed psych involved? are they doing an assessment,? what you need to establish is - are they doing a thorough assessment of your child to obtain a diagnosis? i.e spa referral .

balmaiden

Apologies for not reading this thread through, but I am hoping someone may be able to tell me if my concerns are justified.

My 6 year old Grandson is a very well behaved polite and loving little boy and to my mind seems reasonably bright. i.e there is nothing he doesn't know about superman,batman,powerangers etc.

However at school he has totally shut down. My daughter was told last week that he is now so far behind the other children he needs extra help, fair enough, but the teacher also says he has no friends doesn't mix and is totally in a world of his own.

The reason I have come onto this thread is because I have noticed since he was a baby he has what I would call obsessions. When aged about 8 months he would sit for hours putting a toy car in a shoe and taking it out again.He went to a birthday party the other day and lost a piece of a toy from the party bag, he spent two hours searching the garden for it, oblivious to the other children and despite the fact that my daughter promised to replace the item the next day. His latest is "reading" the Argos book, again for hours at a time.He dislikes his hands being dirty and gets quite upset if he can't wash them for any reason.
That is a brief snapshot of him. Am I right to be considering autism or is he just a boy who prefers his own company, that is how it would have been described in my day. Oh, and one other thing, he says what he thinks and doesn't seem to realise when it is not appropriate.

Obviously it takes somebody with far better knowledge than, Grandma, to diagnose this. I guess what I am asking is should this be left or should my daughter seek some sort of help?

duchy

Sorry starting work shortly so this is a one size fits all post.
Grandma balmaiden I would suggest your daughter makes a formal appointment with the school SENCO (or teacher with responsibility for special needs) and expresses her concerns as a first step.There need to be formalised experessions of concerned documented before most schools will get anywhere near the assessment stage. I certainly wouldn't suggest anyone diagnosies over the internet but your grandson is certainly displaying characteristics that would raise flags for concern.
Sara-never mind an informal comment. I would be putting in a formal complaint to the hospital about the conduct and actions-and lies of the ward staff. Completely unacceptable. The hospital will almost certainly have a patient's charter online-take a look and you'll see they have broken several guidelines
As for me-Josh's school has finally appointed a part-time SENCO (about time) with experience of working for the LEA so we have finally scheduled his annual review focusing on provision for A levels next year. Think it'll be an interesting meeting.
Right work calls-will catch up properly later

fsdss

balmaiden wrote: »

Apologies for not reading this thread through, but I am hoping someone may be able to tell me if my concerns are justified.

My 6 year old Grandson is a very well behaved polite and loving little boy and to my mind seems reasonably bright. i.e there is nothing he doesn't know about superman,batman,powerangers etc.

However at school he has totally shut down. My daughter was told last week that he is now so far behind the other children he needs extra help, fair enough, but the teacher also says he has no friends doesn't mix and is totally in a world of his own.

The reason I have come onto this thread is because I have noticed since he was a baby he has what I would call obsessions. When aged about 8 months he would sit for hours putting a toy car in a shoe and taking it out again.He went to a birthday party the other day and lost a piece of a toy from the party bag, he spent two hours searching the garden for it, oblivious to the other children and despite the fact that my daughter promised to replace the item the next day. His latest is "reading" the Argos book, again for hours at a time.He dislikes his hands being dirty and gets quite upset if he can't wash them for any reason.
That is a brief snapshot of him. Am I right to be considering autism or is he just a boy who prefers his own company, that is how it would have been described in my day. Oh, and one other thing, he says what he thinks and doesn't seem to realise when it is not appropriate.

Obviously it takes somebody with far better knowledge than, Grandma, to diagnose this. I guess what I am asking is should this be left or should my daughter seek some sort of help?

this all sounds normal behaviour to me - in fact my 6 year old does very similar things to your grandson, he's not overly social too. it doesn't mean he hasn't got an autistic tendency.

Autism is usually diagnosed when there is a multitude of problems and there is a wide variety of the spectrum, usually the parent knows when there is something wrong.

there are a number of key area's to look for in diagnosing autism, but as i said it is so wide and varied, that there would be difficulties in diagnosing just with what you have said.

sarah1975uk

Im back again lol well today been so busy saw the Community Pediatrician this morning and stressed the need for the diagnosis to get something near constructive help and support. Had an appointment with the Ed Psych this afternoon she came to my house. And has said the ADOS assesment has been completed now and all is pointing to a diagnosis which will hopefully be imminent of Aspergers. There are other things they are saying will get diagnosed too but thats in the assessment pipeline and will follow. All my worries of her being a dragon were my pre concieved ideas based on phonecalls ive had with her. when i met her face to face she was a really lovely lady and totally supported my concerns and understands my need for the diagnosis. The main problem there was i built up such a good relationship with our regular ed psych but is off work long term at the moment so case been handed over to his senior. The ed psych is also going into school on friday to see DS in the school setting for herself. I also had a phonecall today from CAMHS and i have an appointment tomorrow to take DS to see psychaitrist there to have his meds monitored and be assessed.

At long last something starting to happen in the right direction ...only taken flamin 10 years to make everyone understand. Im trying to keep positive focus on all of this its so hard, just hope its not another scenario of 25 forward 15 steps back;) we shall see eh.

fsdss

duchy wrote: »

Grandma balmaiden I would suggest your daughter makes a formal appointment with the school SENCO (or teacher with responsibility for special needs) and expresses her concerns as a first step.There need to be formalised experessions of concerned documented before most schools will get anywhere near the assessment stage. I certainly wouldn't suggest anyone diagnosies over the internet but your grandson is certainly displaying characteristics that would raise flags for concern.

going to the school senco is a good start - however although he may be displaying characteristics that would concern - from what you describe can also be normal behaviour for a 6 yr old, so please bear that in mind.

Savvy_Sue

fsdss wrote: »

this all sounds normal behaviour to me - in fact my 6 year old does very similar things to your grandson, he's not overly social too. it doesn't mean he hasn't got an autistic tendency.

Autism is usually diagnosed when there is a multitude of problems and there is a wide variety of the spectrum, usually the parent knows when there is something wrong.

there are a number of key area's to look for in diagnosing autism, but as i said it is so wide and varied, that there would be difficulties in diagnosing just with what you have said.

I would only be worried because of the 'shutting down' and falling behind at school - less the sociability side of things. That's why I think duchy's advice is good: start by your daughter talking to the school and finding out what they intend to do to help your grandson. May or may not fall onto the broad autistic spectrum, but there's certainly a problem, and it doesn't need a label for it to be tackled (although sometimes that helps!)

blue_monkey_2

Hi everyone,

Hope everyone is keeping up with the changes to routine - we are trying to keep ours as 'normal' as possible in that we get up, eat and go to bed the same time if we can. Ryan had a little meltdown today over my friends son's marble run. He has been on about playing with it for months when we went to his friends but it she did not set it up exactly as it was on the box and so all hell broke loose. I think the difference now is knowing how to deal with it and letting him get it out of his sytem and out of the way of other children. Having done this more recently I've had a few nips myself, something he never did before. Oh well.

Balmaiden, how is your daughter/son dealing with this, I know you are following up but what have the parents done or noticed about their son. Best to speak to the school and find out what they have to say. It was the school that picked up probems with my son so start with them and see what they say.

Sarah, I am so sorry to hear about your week but today sounds like things are starting to get a step in the right direction. I've everything crossed for you.

I read something in your message that made me wonder about Ryan too. When he has a tantrum or cannot get his way over something he will spin around, flap and babble, I've not noticed shuffling as he will throw himself to the floor or spin on the spot, is this the autistic stuff that the doc mentioned? I was not sure, I just assumed it was his way. I have noticed that if having a bad day he starts speaking in this language I cannot understand, but he does not do it all the time. Is this something I should worry about??

But..... I thought I would drop in and let you know that I have head back from the MP, he will be happy to see me on 23rd and in the meantme he is writing to the council to ask about our situation. I feel positive that he is a) going to be on their case about this and b) not given us the brush off!! I am working on the basis they could have told us there was no appointments left or just told us to come to the surgery - he is actually asking about us so fingers crossed everyone please. Something to feel hopeful about

fsdss

Savvy_Sue wrote: »

I would only be worried because of the 'shutting down' and falling behind at school - less the sociability side of things. That's why I think duchy's advice is good: start by your daughter talking to the school and finding out what they intend to do to help your grandson. May or may not fall onto the broad autistic spectrum, but there's certainly a problem, and it doesn't need a label for it to be tackled (although sometimes that helps!)

i didn't mean that duchy's advice was not good - i believe it was. i just highlighted her points to try and get grandma not to label him.

autismmum

hi every one,
my ds1 has high functioning autism and ocd and my ds2 has aspergers with bowel problems, can i just ask how many other people get their laundry done??? i had an explosion and got a carers assesment got gardening and laundry payments, but my ds2 bowel problems are getting me down, the peadiatrician just sais it happens, but its forcing me to fund a private school because the lea although giving him a huge statement want him to go to a regular secondary school.... with one disabled toilet... not sufficent, he needs a private loo on each floor and a shower unit somewhere on site.
all the doctors support me but the lea is not giving up. so he is having school through first college www.firstcollege.com and i have to pay
cant use the statement money apparently but anyway how many of you have toilet troubles , id love to know, i really feel " bogged " down with it all.