Very confused by the lack of Communication from professionals!

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
  • openheart thank you so much for your reply.

    May I ask how old your boy was when he was diagnosed? If you don't mind of course.

    He has been diagnosed with social communication disorder, repetive and obsessive patterns of behaviour and sensory processing difficulties. He had no support at playschool at all, clearly he wasn't a problem there playing in a corner in a repetive way in his own little world. They did support him at story time, the way they did this was remove him from the circle and take him to another room. This made me cross as I believe they should have supported him to be included in the story time to help him cope rather then remove him. His transistion report from the playschool stated he plays alongside others and not with others, but he is no problem and copes well, and we remove him from ''group'' activities.

    At the transisiton meeting with myself, pre school keyworker, education phycologist, class teacher and senco of primary school a different story was given verbally, a very different account of huge anxiety issues amoungst other things. I am pleased he has now left playschool so i do not have to hear the ''no he is fine'' speech!

    He started school on thursday, he is on school action plus, an IEP will be written up and see how he goes to see if further additional support is necessary.

    The SALT said she would keep him on her caseload and see him every 4-6 weeks but like i say i have heard nothing for just over 6 months. I feel i should make a formal complaint yet i dont normally do complaints.

    I dont wish the diagnoses on my son of course, but a true diagnoses i feel brings an acceptance and understanding. Correct me if i am wrong!

    Thank you also crystal 12 your input makes me think i really should be contacting SALT to find out where the support is for my son!

     

Reply
  • openheart thank you so much for your reply.

    May I ask how old your boy was when he was diagnosed? If you don't mind of course.

    He has been diagnosed with social communication disorder, repetive and obsessive patterns of behaviour and sensory processing difficulties. He had no support at playschool at all, clearly he wasn't a problem there playing in a corner in a repetive way in his own little world. They did support him at story time, the way they did this was remove him from the circle and take him to another room. This made me cross as I believe they should have supported him to be included in the story time to help him cope rather then remove him. His transistion report from the playschool stated he plays alongside others and not with others, but he is no problem and copes well, and we remove him from ''group'' activities.

    At the transisiton meeting with myself, pre school keyworker, education phycologist, class teacher and senco of primary school a different story was given verbally, a very different account of huge anxiety issues amoungst other things. I am pleased he has now left playschool so i do not have to hear the ''no he is fine'' speech!

    He started school on thursday, he is on school action plus, an IEP will be written up and see how he goes to see if further additional support is necessary.

    The SALT said she would keep him on her caseload and see him every 4-6 weeks but like i say i have heard nothing for just over 6 months. I feel i should make a formal complaint yet i dont normally do complaints.

    I dont wish the diagnoses on my son of course, but a true diagnoses i feel brings an acceptance and understanding. Correct me if i am wrong!

    Thank you also crystal 12 your input makes me think i really should be contacting SALT to find out where the support is for my son!

     

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