I just need someone to tell me what the future holds...

[Heytheredelilah1987]

I'm sorry, this post is basically a rant to those who can maybe identify...
My son is 2 and undergoing diagnosis for ASD. Long story short we have been told by various hcp they suspect he has Autism.

He will not be assessed until end of the year due to long waiting lists within the NHS.

Now I know getting a diagnosis will not chnage everything over night. I know the best intervention is probably active parents helping him with his additional needs. But I just feel getting that diagnosis and basic evaluation of my son will give me some sort of reference for how affected he actually he is and thus help me have a clearer idea of what the future may hold.

At present I chnage my mind all the time if he's high functioning or moderately affected. The future is so unkown - will he need a special education? Leave home ever ? Have friends...

I'm. Aware autism is a spectrum and all can be affected greatly despite their level of autism ... but I just felt if we had some expert advice on whereabouts in the spectrum our ds is it will indicate roughly what sort of help he will require in childhood etc.

I can cope with a diagnosis for my son, I just cannot cope with this limbo and level of uncertainty. I know this is me being impatient and I do try and relax and not worry and obsess, but I just feel having some defintive answers could help us all.

I'm the type who needs to know, I feel I will be of greater help to me son without the weight of the limbo on my back.

Anyone else felt this way?

I've been doing some loose aba stuff and also beginning a Hanen more than words course soon. I kmow a diagnosis doesn't equal loads of new support but I just think it'll give some clarity; some light at the end of the tunnel

Hi heythere,
I just wrote a super long reply and lost it!!!!!
So here's a short version.

We are in the same boat, as you might remember! I struggle a lot with the not knowing. I am someone who likes to have ALL the information, but unfortunately we can't have any real idea.
I go back and forth between hoping that DS will be one of the children that come a long way and then trying to be prepared that he may not progress.

He got ASD as his official dx, I thought everything just came under that umbrella?

I have no idea where he is IQ wise, but I have also read that IQ is not the only factor in terms of functioning. A person can have an average/high IQ and still struggle, maybe in some ways more than an individual with low IQ. My understanding is that IQ is a good predictor of functioning but as with everything in the autistic realm - there is no compete answer.

Antiquitted - receptive language is my biggest concern at the moment so hearing how amazingly far your DC has come makes me very hopeful - Any tips would be welcome!!

OP, i think you are at a really tough stage DX wise. I remember the time DD was 2 and the question what it means in the long term drove me potty.

at 2, nobody will be able to tell you. I very much doubt you will get a DX of HF (versus severe or moderate) autism, especially if his speech and language is behind. Only time will tell. DD has ASD and severe LD but I can tell you that she is far less challenging and a lot morehappy than some children with HF i know.

in general, I would not worry about DX that much. It didn't bring us more therapy neither. we had a dozen session if Salt back then (DD has also a severe speech and language disorder/delay). but that was it.

if finances are tight, apply for Dla. it may help to fund therapy and if you get at least middle rate care, you could also get Carers Allowance (if you earn less than £110/week). This may make certain things a bit easier.

Hey 2boys ! Been wondering how you're doing. Thanks for the message :) always good to hear we are not alone in all of this. Like you I go back and forth with my hope and fears for the future...

Coffee - we have applied for dla and are using that for funding the Hanen course and considering doing an ABA one after. I work part time so I cannot apply for carers allowance ... but may do in the future. I'm glad your dd is happy - it's really promising to read these experiences. Thank you for taking the time to help me.

Zzzz - that's a bummer. How's your ds with school?

not sure how much you earn but i got CA whilst working part time. They deduct NI and Tax and 50% of your pension and childcare fees. if this brings you under £110/week you still can get CA. I was just a little above this threshold and just ramped up my pension contributions to get under the £110/week. may not work for you but worth checking it out.

2boys I don't think I have any tips! We supported and support his language understanding with visual aids. Though we never could use picture cards as they were his Thing and he would just cycle through them! He picked up Makaton from hours of watching Mr Tumble and we discovered he thought all body movements while speaking were linked, even if used only once! So we could use some Makaton but also our own arm movements! We didn't expect him to understand when things were noisy, or busy, or he was stressed or be wasn't looking at us. We simplified language right down to speak to him so he didn't get puzzled by trying to decipher extra words and always using the same phrases for the same thing. And he always had bedtime stories. Although sometimes it was the same bedtime story for months on end. So stories and tv were good examples of more complex sentences while our communication with him was simple so he could understand. I can't say he wouldn't have done what he did without that, but simple and visual meant he wasn't always frustrated and stories made him happy!

I have to agree with zzzzz about "early intervention". What is the aim? Our aim for ds2 was to have as free and happy childhood as ds1. His play didn't look like play "should", but it was his play and his enjoyment. Demands would leave him a screaming mess, so demands were massively reduced, that included the demand to perform NT. I gave him as much positive feedback as I could, even just smiling, because an NT baby/toddler/child has masses of positive feedback while out and about from smiling and chatting strangers. ds2 spent a long time crying and screaming when out. No-one wanted to smile at him, mostly they just frowned at me.

Thanks everyone for your helpful input. The bottom line is I just have to know. I just cannot wait a year for answers for my son . Have contacted some people regarding private assesment.

My aim is for my son to have the happiest life he can, with minimal meltdowns and sensory issues causing him stress... early intervention is basically all the things you've listed. Floor play, makaton, salt , hanen courses to help me interact better with him. I do not wish to change my son completely- but I wish for him to have a happy and fulfilling life and realise that helping him with this as early as possible is paramount to his long term well being. Whatever you wanna call it ; I want to help my son as best as we can and as quickly as we can.

I realise a diagnosis of anything will not equal instant help .... I realise we have to put the effort in to help our kids regardless of labels..however I still feel a diagnosis will open doors and at least five closure on the limbo of not knowing

Thanks zzzz... so many hcp have said it's likely he has ASD. We have genetic testing results back soon, if it's not anything like that (unlikely) then asd is looking highly likely. He ticks all the box for ASD.

Antiquitted - Thanks for you reply! We started using PECS and DS picked it up very fast so the visuals have definitely helped. He is progressing... just achingly slowly!! He is only 2.6 and his attention and interaction has improved loads over the last few months so I am hoping that this will help with his listening and understanding.

Heythere - I'm not sure where you are based, but we were given details of someone who does private assessments from a close friend with an older child with Autism that she highly recommended - I can dig it out and PM you the details if you like? She was based in Surrey I think?

I think a methodical approach to any therapy or intervention is a good way to feel you are doing something, or it was for me at least.
As I said, the main priority is communication for us, so I researched loads, read heaps of books and online forums/medical journals/websites and tried different things with DS. If he didn't like it or it didn't seem to have any benefits then we dropped it. I wasn't keen on PECS to begin with and worried it may reduce DS motivation to talk, but it has been great for him.

We have started an ABA program, but it incorporates Floortime, Hanen and basically whatever DS enjoys. I also bought stuff from the absorbent minds website (thanks for that zzzzz - although my bank balance doesn't thank you so much!!) Montessori stuff is really good for DS and fine motor skills etc.

The not knowing is so hard, but even with a dx I still have no clue how DS will progress. It has however opened up support for us - SALT from November last year and Music Therapy and OT starting next month.

Thanks 2 boys we have contacted ones closer by , but thanks anyway.

Sounds like you're doing all the right things for your little man. It's all we can do. I wish I was as patient about it all as you!