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Diagnosis limbo - what to do while I wait?!

frogger

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, this is my first post on here and after reading your story, felt the need to reply.  My son was exactly the same.  I always knew deep down that something just wasn't quite right.  Would not look when his names called, big lack of eye contact, doing weird things like only eating things on his plate if cut up in a certain way, wouldn't upzip his coat unless standing exactly by the front door, running out of the room if a certain advert came on tv etc etc.   He had one word of speech up until he was about 14 months old then lost that.  It wasn't until I sent him to a pre school at aged 2, that the difference was really noticeable when comparing to other kids the same age.  I kind of hoped deep down that it was just a speech and language issue and that he would catch up eventually. 

    Anyway to cut the story short a bit, the SENCO worker there mentioned that a lot of Charlie's development was of a 1 year old or even younger!  Went to see HV who referred me to inclusion services and Speech and Language.  I waited over 6 months before finally seeing a paediatrician who diagnosed ASD.  However, during this time of waiting for a formal diagnosis, I continued the games and practice that Speech and Language had given me to do and also carried on sending him to preschool (who have been fab).  He is now 3 and a half, still not toilet trained and still with extremely limited speech - 2-3 word sentences, however, its an improvement that I don't think would have happened had we not worked hard at home with word games.  Something else to do is to take photos of certain things and stick them with some blu tack on a board in the kitchen where your little one can reach.  If he could bring you a picture of his juice to indicate that thats what he wants, it really helps with speech development if you say the word with the picture.  Or picture of slide to indicate you are going to the park etc etc.  It can help ease the frustration when the tantrum starts if you don't quite understand what they want! 

    It may seem like a long time to you but I'm not even sure its made us feel better by getting a diagnosis.  A couple of weeks ago he was just our son who had "issues" but such a happy little boy and far easier to handle than my elder two.....Now he's our son with ASD. 

    Sorry for babbling.....keep up the work with little one.  Every little "improvement" is a step in the right direction! 

Reply

  • Hi, this is my first post on here and after reading your story, felt the need to reply.  My son was exactly the same.  I always knew deep down that something just wasn't quite right.  Would not look when his names called, big lack of eye contact, doing weird things like only eating things on his plate if cut up in a certain way, wouldn't upzip his coat unless standing exactly by the front door, running out of the room if a certain advert came on tv etc etc.   He had one word of speech up until he was about 14 months old then lost that.  It wasn't until I sent him to a pre school at aged 2, that the difference was really noticeable when comparing to other kids the same age.  I kind of hoped deep down that it was just a speech and language issue and that he would catch up eventually. 

    Anyway to cut the story short a bit, the SENCO worker there mentioned that a lot of Charlie's development was of a 1 year old or even younger!  Went to see HV who referred me to inclusion services and Speech and Language.  I waited over 6 months before finally seeing a paediatrician who diagnosed ASD.  However, during this time of waiting for a formal diagnosis, I continued the games and practice that Speech and Language had given me to do and also carried on sending him to preschool (who have been fab).  He is now 3 and a half, still not toilet trained and still with extremely limited speech - 2-3 word sentences, however, its an improvement that I don't think would have happened had we not worked hard at home with word games.  Something else to do is to take photos of certain things and stick them with some blu tack on a board in the kitchen where your little one can reach.  If he could bring you a picture of his juice to indicate that thats what he wants, it really helps with speech development if you say the word with the picture.  Or picture of slide to indicate you are going to the park etc etc.  It can help ease the frustration when the tantrum starts if you don't quite understand what they want! 

    It may seem like a long time to you but I'm not even sure its made us feel better by getting a diagnosis.  A couple of weeks ago he was just our son who had "issues" but such a happy little boy and far easier to handle than my elder two.....Now he's our son with ASD. 

    Sorry for babbling.....keep up the work with little one.  Every little "improvement" is a step in the right direction! 

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