paedtrician believes he just has language delay

[bjkmummy]

took 2 year old to see paed yesterday. within minutes she ruled out autism and then began talking about my 4 year old who she has never seen and was questioning his dx of autism from another consultant so made me think in the end that my 4 year old is not autistic but thats rubbish cos he is and i have a written dx even if she doesnt agree with it!!!

 

anyway 2 year old - she concluded that he language delay and that is the cause of all his problems cos hes frustrated - im not 100% convinced - feel like im going through what i went through with 4 year old with noone believing me. 2 year old does have a lot of as traits but she dismissed this all as normal 2 year old behaviour.

 

im moving next friday so wont see this consultant again but she is going to write a report. my 2 year old is tearing our family apart - we are struggling to cope with him

 

so what helps will the 2 year old get??? he is going to a new nursery when we move - would they do an iep for him??? also can i access portage???

 

my 4 year old is going to a special school when we move and they said that as i thought 2 year old was asd he could go to the special needs mums and tots group and they have reserved him a place - now feel like a fraud and that ive just made it up about him

 

my best friend was quite shocked with the consultant as she sees his odd behaviour but the consultant is very knowledgable and i believed would be good at sorting joe out but now i feel like im in a land of confusion and am just in limbo with all the struggles and problems with the 2 year old but no real answers for his behaviour

 

has this happened to anyone else - behaviour put down to language delay but then later found to be something else???/

Edited May 19, 2006 by bjkmummy

[Paula]

<'> <'> <'>

 

I cant offer any advice apart from the ive been there done that type of thing.

 

No one beleived me either when i kept saying my son was autisitc/Aspergers.I was told it was because he was a boy and my other child was a girl so i wasnt used to boys,i was also told that because he didnt speak untill very late on i was to blame because i spoke in a strong yorkshire accent !!!!!!!!!!!!!!!!

 

It was so so ###### frustrating.So called experts judgeing my son on at times a 5 minute consultation if i was lucky and not listening to what i was saying or his dad and grandma ect..........

 

I gave up in the end i couldnt face anymore of it and ive never had a diagnosis.This isnt for everyone though.My son is statemented and does attend a special school even without the diagnosis.

[Zemanski]

your son still has special needs whether it is AS or not so you aren't a fraud!

 

often traits aren't strong enough at 2 to differentiate them from normal terrible 2 behaviour, hopefully the people at his new nursery will be experienced enough to pick up any more stable signs over the next year or 2 and things will move on

 

Zemanski

[CarerQuie]

Can you ask for Speech and language therapy?

 

I ask because my child started off with a language delay/disorder and it was the SALT who said that I should ask the paed to refer on for an autism assessment.The SALT was bang on,too.xx

[katkin]

Hi, you can refer yourself to Portage - find them in your telephone book. You will get an initial visit to discuss criteria for help. If your son is accessing 5 sessions at nursery he will not get homevisits from Portage but may - depending on your area- have outreach Portage at nursery. Your new health visitor/gp/paed can also refer. Don't waste time though do it yourself! Portage will also help you refer to education and other agencies. My Portage service certainly takes on ASD/language disorder children. Main brief would be that child has to have a delay of more than a third of his chronological age in 2 or more areas of development:social, cognitive,motor,selfhelp & language. Hope this helps a bit, rushed reply as just off out. Love Kat

[katkin]

Quick bit to add - nursery should be doing an IEP for him and if they do they can then apply for extra funding to help them. They can call in their area SENCO for advice - they will work in conjunction with Portage too, making sure goals are linked. kat

[cmuir]

Hi

 

In some ways I was in same position as you trying to get a diagnosis for my son whose now 4.5 (only just got a diagnosis a few weeks ago). One thing that always infuriated me was that nothing happened until my son was 3.5. It was soul-destroying, but in hindsight I can now clearly see the reasons why. Basically, children are measured in milestones eg by around the age of 1 most children walk, are saying 'mummy', etc. Once specialists do get involved they look at the most obvious things first eg is the child frustrated because of problems communicating (we heard that one too!). I can totally emphasise with the situation you're in but hang in there. Don't give up ? one of the things that I think helped a great deal was that I was consistent in what I'd been saying since my son was 15 months old (ie horrendous tantrums, etc). If you feel strongly that there's something more than language problems, stick to your guns. Time will tell! I know that's hard to hear especially when you need help now, but in my case I found that it was a case of sitting back and watching my son's behaviour become 'not normal'. In particular, when he started nursery, it became very obvious. Fraid I can't give any advice as to what to do now.

 

Best wishes

 

Caroline.

[Flora]

bj, When Luke was 3 he couldn't talk at all, apart from the odd word said over and over again. He was referred to a paed who said that first thing to do was to check out his hearing. He went for a very thorough hearing test and saw an ENT consultant who concluded that he had severe glue ear with profound hearing loss. At this time ALL of his developmental delays were put down to the hearing loss.

 

2 years later he was assessed by an ed psych at school AFTER his glue ear had cleared up. His language delay was still severe and he had the speech and language of a 2 year old. The ed psych thought he was autistic and severe learning difficulties. He was assessed by CAMHS over a 6 month period and the concluding report said semantic pragmatic language disorder, learning difficulties and autistic tendencies.

 

3 years later after requesting all the reports from his assessment (we'd relocated and I wanted a second opinion) I found a letter from the child psych to our GP. It stated that his history and recent assessment by the clinical psych had found that Luke was autistic, and that if he'd been assessed aged 3 then his dx would be autism, but as the clinical picture had changed and even though he most certainly had an ASD he didn't think it would be 'helpful to the family' (those were the exact words) to give this dx, and instead they would list all his difficulties. When I found this out I was livid, and I can only assume that they didn't think I would be able to cope with the dx inlight of the fact that William had recently been dx with Aspergers.

 

It has clouded the whole issue and as a result Luke has never had the help he needs. I am currently waiting for him to be assessed at Elliot House to clarify his dx.

 

Don't give up, it sounds very similar like you are going down the same road as us and the sooner you get an accurate dx the better. It's a long hard battle, but worth it.

 

Lauren

Edited May 19, 2006 by Lauren

[helenmorbey]

Ive had this aswell! We saw the paediatrician last february and he spoke to me for ages about ASD so i came out fairly positive thinking "ok now we know we will deal with it", guess what the letter arrived about the consultation and at the top in big letters it said " DIAGNOSIS ... SPEECH DELAY !!!! I couldnt believe it! However were seeing him again in july and he did say he would refer her on for further testing if necessary! Hang on in there, Helen xx

[bjkmummy]

thanks everyone

 

i just feel like im going through what i went through with the 4 year old. im happy to let time tell and hopefully the next 6 months will confirm what i know.

 

joe is going to a new nursery in 2 weeks time so ill insist that they get an iep done and mention re funding. will contact portage as soon as ive moved plus the health visitor. ive spoken to the special school and they feel that joe could go there but i need a referal which hopefully should be easy enough.

 

ben who's four and in the mainstream reception year and going into a special school when we move for assessment so that he can get a statement will ive been told only get 2 days at the special school!!!! typical - i fight to get him a place for him only to get one part time!!! so im going to have manic twins and a manic 4 year old at home most of the time - happy days!!!!!!!!!!!!!!!!!

 

but seriously ben will finally be getting the help he needs plus he will go full time in sept - and they hope to offer 3 days very shortly but i feel like ive got 50 balls in the air at the moment an dthey can drop at any moment but i know that moving is best for the children and for me and already i do feel as though they are getting so much help than we get at the moment so the move will be good!!!!

[Bullet]

What about downloading a copy of the Checklist for Autism in Toddlers and seeing how that relates to your ds2? It can't tell you whether your ds2 has an ASD, but it can indicate if it looks like he will need to be referred. You could go back to the paediatrician armed with specific information as well.

[BusyLizzie100]

knowledge is certainly power. When I went to the paed with ds1, saying I think he might have AS, she listened to me because ds2 already had a dx of ASD and she was prepared to accept that the likelihood of a sibling also having an ASD would be higher than normal. I gave her a detailed list of all my concerns about ds1, and she said that was very helpful. At the time she gave him an off-the-cuff dx of AS, and we later asked for clarification, which took some time (ie, a long wait) but confirmed her view. I don't think I'd have taken it nearly as far, if at all, if it hadn't been for my experience with ds2.

 

With ds2, his development delay had been well known and it wasn't until he was about 3 and Sensory Integration Dysfunction was dx that I started reading about autism. In fact, the OT and the paed laughed when I mentioned the autistic spectrum. But my concerns grew, and slowly the nursery's concerns grew and in the end the paed listened and sent him off to Guy's. They sussed him in just one morning.

 

You know your children better than anyone else. Some people listen, some don't. hopefully the new nursery will listen and understand. My ds2 had IEPs since he was 2, with no dx, and all those IEPs paid off when we applied for stat assessment - we had pages and pages of evidence!

 

If, in your heart of hearts, you think there is something going on, you may very well be right. It sounds like you are well on track to support your youngster whatever the outcome may be, his big brother too, so be proud of yourself and keep us posted.

 

Good luck,

Lizzie