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Very confused by the lack of Communication from professionals!

proud twin mummy

Hello and here goes my first ever post on this topic.

Just a tiny bit of history, my twins were born extremely prematurely and were being seen by consultants at hospital for 2 years. Then referred to community paediactric team where my daughter was discharged age 3, my son continued to be monitored for speech delay.

Age 2.5 years I really started to notice previous ''quirky'' ways seemed to be affectioning the way he was developing. At the 3 year app the paed asked me if i had concerns, I have no idea where the word even came from but i said said ''autism, I think he has autism''. She nodded and said we will keep monitoring and assesing but don't worry.

To cut a very long story short he was seen by SALT and then we went back to pead at that stage we were told ''we are def looking at a diagnoses of autism'' at that stage although i felt very sad there was a wave of relief also. Paed said one more SALT assesment and we will get you back in for ''formal diagnoses'' shortly after.

My son was observed by SALT at Playschool and home and lots of games played with him (assesments I am sure) I was promised i would get a call to explain results and observations and the call never came, no report of anything from those assesments or tests. We were then called back to the Paeds office only to be told ''we cannot diagnose autism at this stage, we will see you after christmas after his first term in school''

And that was that, my jaw must have hit the floor as i was told this is what the diagnoses is and now thats chnaged, i did have a few tears as i explained to the paed this goes against every mothers instinct in my body.

Is this normal for the diagnoses process? Never did get the call from SALT nor a report and that was 6 months ago.

Any advise on this would be so greatly appreciated, i feel so bewildered by the lack of communication with the ''proffesional'' involved Undecided

 

 

Parents

  • Hi PTM

    My boy was diagnosed with autism (I also), here is an overview how. Born underweight, big beautiful wide brown eyes, problems with language and understanding (referred to child speech therapy), always not well with cold/flu's and referred to hospital(could not find anything wrong), freezing up in nursery(playschool), totally obsessed by Dr.Who and lining up things, especially cars. The nursery(playschool) brought in support worker assist to work with him one on one especially on language, a child psychologist(connected to the primary school so was the nursery)/nursery observed him and they both did a report on his lack of development. This was for primary school purposes, the psychologist said that they have to wait until he is starting primary school to see if he develops more meantime. So what they seem to be doing is making there formal RED LINE, at the start off primary school. There must be more of an obligation on the state then. I felt a lot of time was wasted pre-school and brought frustration, but I was glad with the one to one support for him at nursery and at the school as well.

    How about calling a meeting, like I did,, with primary school teacher, child psychologist, nursery(playschool manager), assist supportworker and the parents(yourself of course), to discuss, they should be doing at least 6 month reviews anyway. You have to find an environment which works for your children, I think it is a delayed diagnosis because the government does not like to commit itself, but as you know diagnosis pre 3 or post 3 year old is benchmark between mild or severe autism. Seems they are drawing the line at mild autism and hoping it levels out in time, so they can assess the autism at circa 4 to 5 were it is clearer to compare with peers of that same age.

    It is cop out on there part.

    Hope things work out okay.. and you get good assistance and advice.

    Call a meeting with the key people, don't let them off the hook. Yell If you son still has speech delay, he should be getting one to one assist now !!!!!!!!

Reply

  • Hi PTM

    My boy was diagnosed with autism (I also), here is an overview how. Born underweight, big beautiful wide brown eyes, problems with language and understanding (referred to child speech therapy), always not well with cold/flu's and referred to hospital(could not find anything wrong), freezing up in nursery(playschool), totally obsessed by Dr.Who and lining up things, especially cars. The nursery(playschool) brought in support worker assist to work with him one on one especially on language, a child psychologist(connected to the primary school so was the nursery)/nursery observed him and they both did a report on his lack of development. This was for primary school purposes, the psychologist said that they have to wait until he is starting primary school to see if he develops more meantime. So what they seem to be doing is making there formal RED LINE, at the start off primary school. There must be more of an obligation on the state then. I felt a lot of time was wasted pre-school and brought frustration, but I was glad with the one to one support for him at nursery and at the school as well.

    How about calling a meeting, like I did,, with primary school teacher, child psychologist, nursery(playschool manager), assist supportworker and the parents(yourself of course), to discuss, they should be doing at least 6 month reviews anyway. You have to find an environment which works for your children, I think it is a delayed diagnosis because the government does not like to commit itself, but as you know diagnosis pre 3 or post 3 year old is benchmark between mild or severe autism. Seems they are drawing the line at mild autism and hoping it levels out in time, so they can assess the autism at circa 4 to 5 were it is clearer to compare with peers of that same age.

    It is cop out on there part.

    Hope things work out okay.. and you get good assistance and advice.

    Call a meeting with the key people, don't let them off the hook. Yell If you son still has speech delay, he should be getting one to one assist now !!!!!!!!

Children
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