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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.

 

  • 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 

  • 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! 

  • Get back in touch with the Child Development Centre and ask how to get your son on the Portege list. Portege would come round once a week and work with you and your son to help with his development and help give you tips on how to help with his develpoment during the week between their visits.

    Are you not receiving speech and language sessions? If not, then ask about getting these sessions started. My son is now four years old and still doesn't speak. He's been receiving speech and language sessions since he was two years old and that was before his official diagnosis. The speech and language therapist will also help you with advice and pointers in supporting your sons overall development.

  • Hi Frogger,

    i'm in a simlar situation to you, i have a 2 year old boy who will be 3 in march. i have known since he was young that something wasn't quite right with him. he does very stange things like rubs his noce up the tv, very specific to how he has things EG his bed has to be a certain way before he'll get in it, very fussy with food......and the lost goes on. He has no speech, he did used to say 2 words in a babish voice but then that all stopped around 19 months. He uses pointing and makes noises for things he wants. We have major issues with sleep also (i'm a very tired mommy ha)

     

    My son also has epilepsy, his eplielsy doctor agreed with me that things weren't 100% with him, we are due to have a full assessment in Febuary which we have waited 10 months for, we have to wait till feb for speech therapy.

    I have asked myself the same question what should i do while we've been waiting, i think just going about your day as you do maybe take him to play groups, we pay for my son to go to pre school for 2 days a week, which has helped him and the staff there are amaxing.

    Things will get sorted for you i know the wait is horrible it drives me mad, this website has loads of information. I'm currently looking for groups and people to talk to who know how i feel and my situation, even though i have great support from family it's sometimes hard for them to understand, and i ofeten feel like i am on my own (even though i'm not)

    This is my first post on here, not sure if i will have helped you much, if you want to know anymore about my situation feel free to ask, were new to all this and the journey is going to be a long one.

    Keep your chin up hun x