Hi everyone,
I'm new here but feeling very despondent. Will try and be brief!
I have a 4 year old boy, who has been under c/o SALT for last 18m due to speech delay. He now has vocabulary - has always had good comprehension - but can't communicate any feelings. At least 50% of the time he communicates via long strings of echolalia (a minute or so in duration). He has made no friends at nursery and doesn't care. He is very close to me bt can't sustain a conversation - can only present a series of statements. Can answer very rudimentary questions only.
Has multiple sensory issues. Frequently has meltdowns at people laughing (other than me) and can't cope with certain noises or layers of noise. Develops odd and sudden phobias - the music to In the Night Garden is the latest - a show he previously adored.
Gross and fine motor skills below average - been referred to OT.
Has lots of rages when the tiniest thing goes wrong or sometimes just in the middle of a meal for no apparent reason. Also slaps me out of happiness without warning too.
Because he is so quiet, it's easy to miss his presentation. His eye contact with me is good - even excessive at times. Hit and miss with other people but can be normal. we have had lots of problems getting his differences recognised but due to a sudden deterioration, lots is now happening.
An assessment by local SEN school agreed he wouldn't cope with mainstream. Nursery also believe that and so does the speech therapist.
We saw a second paediatriacian last week who was AMAZING! Really experienced with autistic children, she 'got' everything straight away..it so refreshing to talk to her. My son has to now be formally diagnosed but she said she believes based on her own observations and what I described that he is definitely autistic. Weird but a relief to hear finally...
Today the specialist communication expert came out to see my son at nursery and I was left feeling really deflated. She definitely was pushing for him to go to mainstream with support - but given his sensory problems, I don't think this is the right environment for him. Even with a 1-to-1 worker, he will struggle with sensory overload and will drift into his own world. She wouldn't commit to whether he would fit an ASD diagnosis but admitted he made no effort to interact but said he could follow instructions...until a conversation started as a group at which point he lost interest and withdrew.She admitted he didn't present as neurotypical but hedged about saying he ticks the boxes for ASD.
We had a long conversation about mainstream and she said he will have to go there anyway until places come up at SEN school. But i don't want to do that. We are just starting statementing process - IF they agree he needs SEN school I don't want to put him in an environment which will cause him distress. He will only be 5 for heavens sake - still a little boy!!!!!
I am worried about how much influence this person will have on the statementing and assessment process - I think they are supposedly quite influential. She also saw him on what nursery described as a very good day (typical!).
I just feel so fed up - why can't so-called experts see what's in front of them??? :(
