Published on 12, July, 2020
Why is it so hard to get a diagnosis?
My son will be 3 in October and we have always known he will be on the spectrum.
Everyone from family, friends, health visitor, nursery staff even strangers at the park have all commented on his autistic behaviour.
At first I was devastated, now...i wouldn't change him for the world ( except having him talk would be everything! )
As a baby he would ignore everyone except mum and dad, loud bangs for attention didn't phase him, toys didn't interest him, not did other kids or babies. We had his hearing tested and it was all fine.
He started babbling very early on and said a few words mama, iggle piggle, dada, bit-bit ( for food ) but then suddenly regressed.
He sat up unaided. Crawled, walked all very early on. Pincer fingers skills were something else, he could find the tiniest crumb of food and eat it from the floor
Tiptoe walking was constant and when excited would go rigid open mouthed and wave his arms
Became very fussy with food, only plain food, mainly beige in colour - chicken nuggets, plain pasta etc if he didn't like the colour he would not even attempt to touch it. We had to shove a taster in his mouth to force him to taste something. Which if he liked he would eat.. Only if we forced that first bit.
Meltdowns... Oh my god... I had never experienced anything like this. Was like he was possessed. Fortunately we have adapted to these and they are less frequent but they come from nowhere, sometimes when he wakes up during the night and can last for a half hour constant chaos...nothing calms him down. Eventually he just drops to a heap. Exhausted and let's me cuddle and comfort him.
He puts toys into piles of colour, texture, shape..its a work of art really lol. He never plays with toys as they should be. Rolling cars etc he would rather spin the wheels for hours
I won't post everytbing as I'll be here forever!
We got him to a fantastic nursery at 2yrs and his progress is fantastic..but still, the autism is definately there..there is no doubt.
He doesn't talk or point, he will take our hand and place it on things he wants so we have him with speech therapy
He is getting psychologist to assess him at nursery this year also.
The help we get is fab but I don't understand why it takes so long for that official diagnosis. We had our 2nd review and the Dr has stated she thinks he's GDD...everyone who knows Harrison both professionally and personally knows this is most definitely not the case! The only delays he has is speech and social..so why is GDD being brought into it? I thought that was it they had multiple learning delays?
He is clearly on the spectrum..so why do we feel like the specialist doctor is trying to come up with other things like she's avoiding giving the asd diagnosis? It's like with each diagnosis you get 1million pound so they don't wsnt to give it to everyone.
I understand if you are diagnosed it's lifelong diagnosis so they are careful at making that decision but why not make it a 3yr review or something?
Sorry for the long post. My heads just fried with all of this. Anyone else have to wait so long when clearly the ASD is there?? What's your experiences of diagnosis?
Thanks for reading my rant
your post feels as if i wrote it. but i had never heard of autism until it mentioned about my boy when he was 18 months old. i never even noticed he was non verbal until it was pointed out to me. hes my first child so i didn't know when they were supposed to start talking! he said a few words and i thought it was normal.
he was diagnosed yesterday - after waiting for 2.5 years! yes, and they cancelled an earlier IND appointment until i rang and rang begging them that the boy had no learning plan in place for September when he starts year 1.
my point - i feel your pain because they couldn't put anything in place for my son in terms of his learning because he didn't have a diagnosis. now they can.
i suggest you go to your gp again, get speech and language involved. get his nursery so they can get the local authority involved. get everyone involved. now. so everything is geared up for when he starts school. good luck X
Thank you so much
Yeah, It was also pointed out to me early on, by other people commenting on lack of eye contact, flailing arms, the arrangement of toys etc.
It's so annoying because everyone who spends proper time with him sees it but it's like the professionals are just so reluctant to give an official diagnosis.
I am going to keep pushing, the nursery and health visitor are on board and are going to write letters supporting what we already know.
It will confirm everytbing for us and means we can get proper help and planning like you say. Before school starts.
Thanks again for your comment xx
you can self refer to the speech and language people which is what i did. they will invite you to an appointment and if they see the need, ask you to attend speech and language therapy. that is the starting point. if speech and language is not involved, you haven't started. even the diagnosis was done primarily by a speech and language practitioner. the doctor and a psychologist just observed him and asked me questions.