Diagnosis limbo - what to do while I wait?!

Hi, my son is two in a couple of weeks - last week we were told by a paediatrician at the Child Development Centre that she thinks he may be on the autistic spectrum. She has referred him for a full autism assessment in 9 to 12 months time.  He has had some hearing problems due to glue ear, but got grommets 2 months ago - I had been hoping that it was the lack of hearing that has caused his speech problems, but his audiologist says that isn't the case.

My son has no speech at all - he makes some noises, but mainly a very loud 'dah' sound which is like a claxon going off!  The paediatrician says he has poor eye contact, impaired social interaction and that his language is well below what she would expect from a 1 year old.  A few months ago I started using basic sign language with him because he was getting so frustrated at not being able to tell us what he wanted, he was banging his head on the floor and walls and biting himself.  The sign language has helped his frustration and since he got grommets, he does seem to have 'woken up' to the world more.

He was babbling and had started to say 'birdie' at 12 months old, which dissappeared around 13 months and never came back.  He is also very poor at pointing to show us what he wants. 

I want to keep an open mind until the assessment but that could be a year away.  My concern is that it could be another 12 months until we get an answer and maybe I should be doing something to help my son in the meantime.

My son is really lovely (I know I'm biased!) and in many ways he's much less work than his older brother because he is so independant, but I don't want to let him down by missing something I could do with him at home. Also, he really hates the speech therapy group he goes to - he resorted to head banging the floor and hitting another parent the last time I took him.  The Paediatrician says he needs one to one, but when I said to the SALT's that I didn't want to bring him because it makes him distressed, they said they used the same techniques with kids on the spectrum and thought I should bring him.  I don't know what to do now.

Any advice would be so welcome - many thanks in advance.

 

Parents
  • Hi, Many thanks for all your replies - lots of useful advice here.  I'm going to try the photo communication with my son and ask about Portege.  It's been a difficult time for us and getting your replies have meant alot.  My husband and I have been trying to not think about our son's problems by keeping an open mind about if he is or isn't on the spectrum.  But we've found that is a) impossible and b) unfair to him to not start to really look at the ways it affects him and try to help him. All the best to you all and I hope you enjoy a really nice festive season.xx 

Reply
  • Hi, Many thanks for all your replies - lots of useful advice here.  I'm going to try the photo communication with my son and ask about Portege.  It's been a difficult time for us and getting your replies have meant alot.  My husband and I have been trying to not think about our son's problems by keeping an open mind about if he is or isn't on the spectrum.  But we've found that is a) impossible and b) unfair to him to not start to really look at the ways it affects him and try to help him. All the best to you all and I hope you enjoy a really nice festive season.xx 

Children
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