Why is a diagnosis so hard to get??

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! Relaxed )

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 Joy

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 Joy

Parents
  • Hi mona0486 sorry I cannot help you regarding the time it takes for assessment, But felt compelled to say a massive thank you for being you! From my perspective you fully understand your son,you are doing the right things,you have accepted who he is,you are pro active in finding out all the things you will need to care and nurture him, he is indeed a very lucky boy to have you as his mum.

    Rest assured he will continue to blossom into a unique caring and understanding man,thanks to you.

    sorry if this is a bit over the top but after years of hiding my true feelings I now just tell it how I see it.

  • Thank you Lonewarrior! 

    That really means a lot to me. Relaxed

    I found it hard to accept at first but I am so grateful for my little boy. I was told I couldn't have kids so he is my little miracle!

    I love who he is, how he is. I love his quirks and how excited he is at Lamposts and fences Joy 

    I feel like a warrior myself. A warrior mum Muscle

  • We all need more positive in our lives,I had nothing but negative from school,family were fine but just that not unhelpful but more"oh he is just whose is". I came out ok. I can come across to friendly in my comments but that's me not knowing quite how far I should go, I now just say it and deal with it.

  • Wow!! Congratulations to you and your family!  You must be over the moon!

  • Hi thanks,emotions are a challenge,I was very emotional today as my daughter went into hospital to give birth yesterday,just heard she gave birth at 10:00 am mum and baby boy are doing fine.So if little things can effect me then that was about as big as it gets. I am a proud dad and grandad now,

    Emotions have always been an issue,I have learnt at my age and realising I am probably autistic that it is now time to be ME,

Reply
  • Hi thanks,emotions are a challenge,I was very emotional today as my daughter went into hospital to give birth yesterday,just heard she gave birth at 10:00 am mum and baby boy are doing fine.So if little things can effect me then that was about as big as it gets. I am a proud dad and grandad now,

    Emotions have always been an issue,I have learnt at my age and realising I am probably autistic that it is now time to be ME,

Children