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Undiagnosed

NAS10051

Hi,

I am new to this site and wondered if anyone has had a similar experience to my own.

My 5yr old son has been on a waiting list for asd assessment for a year now. We have recently started to get help for his needs through a disability team. We have recieved help through SLT and education psycologist and are awaiting a statement for him at school.

I recently rang the team that carries out assessment for asd and they said my son still has a long wait for diagnosis ( i think they are talking years). Has anyone else had a similar experience? I find it difficult to work out my sons level of understanding at times and on bad days when I'm feeling the strain I start to really doubt my own parenting. I wondered if diagnosis would give me a clearer understanding of his needs.

Parents

  • Hi,

    thankyou for all your replies.

    I suppose we have had a provisional diagnosis from the Educational Psycologist written for my sons statement. We have had some support (from respite care and the adaptations team have put up some safety gates in our home) even without a formal diagnosis from the local authority diagnostic team.

     Over the Easter holidays i struggled with some of my sons behaviour and I am just drawing breath now he's back at school.

    My son doesnt use words to communicate and this leads to confusion on everyones part. As he's got older he seems less flexible and more likely to meltdown.SLT have said that they think he is ready to use PECS and we waiting to hear..... i think because he is stronger and bigger I find his meltdowns harder to manage and I wonder if he will eventually slip out of my grasp and under a bus or into the road. i feel that I'm scared of going out with my son (5yrs) and his sister (7yrs) because i end up running down the street after him or wrestling with him on the kerb or repeatedly putting his clothes back on when hes taken them off in the street. We also struggle with incontinence at times. We recently redecorated his room and now it is trashed.

    Intense World I'm not sure why they have these NICE guidelines as noone seems to have read them, they dont seem to have made any difference. i am pretty sure that I am not the only parent who is in this situation. I could look into private diagnosis but the cost puts me off. Its all a big learning curve for him and for me!!

Reply

  • Hi,

    thankyou for all your replies.

    I suppose we have had a provisional diagnosis from the Educational Psycologist written for my sons statement. We have had some support (from respite care and the adaptations team have put up some safety gates in our home) even without a formal diagnosis from the local authority diagnostic team.

     Over the Easter holidays i struggled with some of my sons behaviour and I am just drawing breath now he's back at school.

    My son doesnt use words to communicate and this leads to confusion on everyones part. As he's got older he seems less flexible and more likely to meltdown.SLT have said that they think he is ready to use PECS and we waiting to hear..... i think because he is stronger and bigger I find his meltdowns harder to manage and I wonder if he will eventually slip out of my grasp and under a bus or into the road. i feel that I'm scared of going out with my son (5yrs) and his sister (7yrs) because i end up running down the street after him or wrestling with him on the kerb or repeatedly putting his clothes back on when hes taken them off in the street. We also struggle with incontinence at times. We recently redecorated his room and now it is trashed.

    Intense World I'm not sure why they have these NICE guidelines as noone seems to have read them, they dont seem to have made any difference. i am pretty sure that I am not the only parent who is in this situation. I could look into private diagnosis but the cost puts me off. Its all a big learning curve for him and for me!!

Children
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