Autistic or Not?

[Stressed247]

Hi Everyone

 

I am new to the forum and just hope someone can offer me some guidance.

 

I am a mum of three boys aged 4 and under. I have 4 year old twins who were suspected of having ASD when they were 2 years old. Having been under the guidance of professionals, my son D received a diagnosis of Childhood Autism with severe learning difficulties, my other son R was seen to be making progress, so I was advised that he would be reviewed regularly.

 

I was originally in denial, but eventually accepted the diagnosis and have tried to help both son's in any way possible, including having the neighbourhood children in to play to help with R's language etc. I have recently found ABA and have been amazed by D's ability which I honestly did not know was there.

 

I have also recently entered the statementing process and am going to have to fight for R to get more hours.

 

At a recent meeting with the professionals, I discussed a diagnosis for R, but it seems he ticks boxes in each category but not enough, I was then informed D would not get his diagnosis if tested now. I know both my sons have made great progress, which has been hard work, but worth it. I just don't understand how in the space of 9 months my sons diagnosis can be wrong.

 

Is this common and should I get a second opinion?

 

I am confused as to what I should do, and my son D stims and flapsand is non-verbal, any ideas where I should begin to find answers, any common experiences would be appreciated.

 

 

[JsMum]

Hi, your R sounds a lot like my son, he ticked boxes but not enough, for a local authority diagnoisis, we too are going throw the LEA for specialist provisions, and I think this is where the link is, like your R, J had lots of difficulties with Language and was constantly been assessed only to be discharged but now the LA are saying J cant have AS because of his early Language difficulties, if it was that significant then, why wasnt he recieving specialist speech and language services? I feel for some children that can look like they can cope in a mainstream setting they will pass it off as Features and Traits, and if any further behaviours develop its Oppositional and classed a ODD, when its clear its a reaction of been in the wrong setting, I have had J assessed privately and he does have ASD at a higher level, he has lots difficulties still due to his expressive abilities and his other diagnosis.

 

The LA wont diagnose J as ASD and I feel its down to the needs of the services education/social/health.

 

Does R recieve any therapy for his Language difficulties,

 

Does R have a statement or are the hours he has already on School Action Plus?

 

We are having a second opinion, I think if you still have concerns over your Rs development then its is crucial now because I feel that the early damage to J has had a lasting effect on him effecting his emotional and behavioural difficulties.

 

I would ask again for another opinion and try and see a specialist in Autism, our LA state on the reports that the specialist we saw are specialist of ASD but I dont feel that confident because they said that J had good eye contact and that he didnt talk about his obsessions in a short observation at school, of which he attends just a couple of hours a day, until recently.

 

I feel its a interlinked process and there not diagnosising some children with ASD to save money for the services.

 

MY OPINION !!!!

 

I would defo go and get another opinion but do it with everything, Ed Pysch, Speech and Language, OT and Autistic Specialist.

 

I wish you the best of luck.

 

JsMum

Edited July 19, 2008 by JsMum

[smiley]

Hiya and welcome to the forum,

 

Sometimes, it can be unclear at four how our little ones are going to develop - and the professionals seem to want to wait a couple of years to see how they go.

My son has always had very obvious difficulties - but it took until he was five to have a clear diagnosis. He was premature, which slowed the process down too, we're the twins very early? That can sometimes put the professionals off giving a definite diagnosis when they're still teeny.

Very, very frustrating - but as long as their needs are being met, i wouldn't worry too much.

You can get a private diagnosis - or ask for a second opinion. It depends on your own gut instinct.

 

<'>

[Karen A]

Hi Everyone

 

I am new to the forum and just hope someone can offer me some guidance.

 

I am a mum of three boys aged 4 and under. I have 4 year old twins who were suspected of having ASD when they were 2 years old. Having been under the guidance of professionals, my son D received a diagnosis of Childhood Autism with severe learning difficulties, my other son R was seen to be making progress, so I was advised that he would be reviewed regularly.

 

I was originally in denial, but eventually accepted the diagnosis and have tried to help both son's in any way possible, including having the neighbourhood children in to play to help with R's language etc. I have recently found ABA and have been amazed by D's ability which I honestly did not know was there.

 

I have also recently entered the statementing process and am going to have to fight for R to get more hours.

 

At a recent meeting with the professionals, I discussed a diagnosis for R, but it seems he ticks boxes in each category but not enough, I was then informed D would not get his diagnosis if tested now. I know both my sons have made great progress, which has been hard work, but worth it. I just don't understand how in the space of 9 months my sons diagnosis can be wrong.

 

Is this common and should I get a second opinion?

 

I am confused as to what I should do, and my son D stims and flapsand is non-verbal, any ideas where I should begin to find answers, any common experiences would be appreciated.

 

 

 

 

Hi and Welcome to the Forum.

It is a personal opinion but if you have been given a clear diagnosis for D it may be a good idea not to ask for a second opinion for the time being.

It is very unlikely that a clear diagnosis once documented would be withdrawn because ASD is considered a lifelong condition.We are about to have further assessments for Ben who is 10 but he never had a clear AS diagnosis because the professionals could not reach agreement when he was assessed two years ago.I have never come across a diagnosis of ASD being withdrawn and did ask on the Forum.

However it is possible that if you do ask for a second opinion that the second professional may not agree.This may be unhelpful rather than helpful in terms of the support that might be offered in the future.

So it may be worth waiting until D child is older and has been in school a while.If things improve so much that the diagnosis is more in question then review the situation.Things can change a lot during primary school and to be honest it is worth keeping hold of a clear diagnosis if you have one....at least until you are sure D is settled in school and making good progress.

 

As regards R he may be a twin but is still an individual.It is certainly worth monitoring the situation and pushing for an increase in hours.Many people here have been able to obtain a Statement but it can be a long journey.Karen.