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

(44 Posts)
Heytheredelilah1987 Sun 26-Mar-17 19:31:43

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?

notgivingin789 Mon 27-Mar-17 01:06:57

Whether his high- functioning or low functioning shouldn't be of a concern as hard as it is know. If you did know it wouldn't end the anxieties, you will still be worried about his future never the less.

What your going through is normal, the uncertainty, new things to learn about. We've all been there

notgivingin789 Mon 27-Mar-17 01:11:52

Posted too soon hmm.

....been there smile. You need to put whatever diagnosis he has on one side and focus on his needs. Knowing wherever his on the spectrum wouldn't give you an indicator of what help he will need ( if that's what you mean). Focus on his needs... does he have a receptive delay ? How his speech and language skills, does he have any sensory needs. Focus on that, not on the diagnosis or where he is on the spectrum.

The future is uncertain and it also doesn't exist. What you need to do is focus on the present.
Take one day at a times. Hang in there.

zzzzz Mon 27-Mar-17 08:03:48

Nobody knows what their child's future holds. My ds is autistic and we don't know, I do know he won't be a drug addict or a criminal in any real sense (he might accidentally walk off with your Lego!). I know he will not be pointedly unkind.

Heytheredelilah1987 Mon 27-Mar-17 08:15:35

Thank you zzz and not giving- glad to hear what I'm going through is part of the norm. I feel so guilty for nor handling the not knowing well. On the whole I've been very proactive and focused on "doing" to help my son. We are paying 800 for a Hanen course to help with his communication and we have implemented a sensory diet to help with his sensory needs - he's a seeker. We also have adapted massively as a family.

zzzzz Mon 27-Mar-17 10:14:39

Is he happy? Can you see not very nursery/school that you can access? Can you foster friendships for him? Do you have peaceful space and a therapeutic environment? How are relationships with the wider family? Are these going to be helpful going forward and how can you help them be more so?

Assessment will not lead to support. There is very little anyway.

Is he verbal? If not does he have outlets for his intelligence and socialising that DON'T involve speech.

zzzzz Mon 27-Mar-17 10:14:56

Whoops .=?

Heytheredelilah1987 Mon 27-Mar-17 10:57:45

Hey zzz. Yes he's happy on the whole. Suffers with bad meltdowns which result in head banging and biting- this tends to be cyclical though. We have tried various things to try and tackle the biting. It has decreased. He has a friend of sorts but prefers solitary play. He goes to a SN group every week and begins nursery in September who have assured one on one support will be in place. His speech is regressive. He's behind by around a year with communication and social skills the NHS SALT has said. He has good relationship with immediate family, others he can take or leave and sometimes barely notices dependent on his mood. I am.confident early intervention is going to help him. Come on.

I am unsure if he will be diagnosed hfa or moderate ; I've looked at the dsm diagnostic criteria and if I'm honest he appears moderate according to that. Which is fine. So long as he's got the help of his family I kmow he will be ok, but doesn't stop the worrying and frustration of no diagnosis.

Allthewaves Mon 27-Mar-17 11:11:56

In our case it changed. Ds2 who nearly 6 presents generally as milder hfa BUT in school he is presenting as quite severe due to agressive meltdowns and school are looking a 1:1 for him

zzzzz Mon 27-Mar-17 11:18:07

I doubt they'll say either way. I don't think it's the norm to dx HFA/LFA, in tests are notoriously challenging on both toddlers and individuals with communication deficits.
I think they either dx ASD or Autism. The impression I got was that Autism was more often given when children were less able Day to day and ASD for the rest. I suspect it changes from area to area.

Ds is severely language disordered. So at preschool only individual words, no names. He argued quite convincingly not to go to school this morning at 11 grin

zzzzz Mon 27-Mar-17 11:39:33

Not "in tests", IQ tests

Heytheredelilah1987 Mon 27-Mar-17 11:50:38

Ah ok. I thought they did levels ? 1 2 or 3. I think it varies county to county... from what I've read of classic autism my son seems to have many of those traits. However other times he seems relatively high functioning. It's a minefield

zzzzz Mon 27-Mar-17 11:54:51

High functioning means IQ over 70, not how autistic he is. It is relevant because higher IQ probably helps overcome deficits more easily, but it won't indicate how well he will cope with life.

zzzzz Mon 27-Mar-17 11:55:26

We weren't given levels (Devon)

Heytheredelilah1987 Mon 27-Mar-17 12:33:22

Ah ok zzz I know it is the main component for hfa but I have read other things also make up the diagnosis

zzzzz Mon 27-Mar-17 12:56:08

Where did you read that?

gamerchick Mon 27-Mar-17 13:02:12

It's impossible to answer any questions really at that age. Here they won't diagnose until 7. All you can do is go day to day and you'll know a bit more when he's older.

Mines 10 and it's only in the past few months I've made a positive choice on what kind of secondary education he'll need. It was impossible to really tell until now.

It's one long slog... battle after battle. That's all I can really say.

Heytheredelilah1987 Mon 27-Mar-17 13:38:43

Thanks gamer. I'm amazed they don't diagnose until 7 where you are. Early intervention is key. Why so late?

gamerchick Mon 27-Mar-17 13:52:05

It's something to do with a lot of autistic traits picked up when young a lot of kids 'grow out of' by 7. The road becomes clearer type of thing. I'm assuming it's a resource thing but early intervention seems to be picking up speed lately in mental health in kids. so things may have changed since our diagnosis.

AntiQuitted Mon 27-Mar-17 14:45:11

My ds was diagnosed at 2 (he'd regressed at about 17 months). Everything I read around that time was that you can't tell and it was true in our case. 2 year old ds understand almost nothing. When I took him for his two year check and we were waiting he mostly ran backwards and forwards shaking his head or stroked the reflective surface at the desk area. He was very sensory defensive, he ran in circles and flapped a lot. His diagnosis only says "autism".

He's in mainstream reception right now with only basic support plus speech therapy and a friendship/communication group. He still has a speech delay, his understanding is literal and in the present, his phonics and maths are at the top of the class. At 2 there was little sign that this would be in his near future.

Heytheredelilah1987 Mon 27-Mar-17 15:21:14

Oh I see gamer.

Anti - that's for sharing your experince. Very promising to read.

minifingerz Mon 27-Mar-17 15:39:51

By 'spectrum' they don't mean 'from mild to severe'.

zzzzz Mon 27-Mar-17 15:48:59

What sort of early intervention do you feel is key?

Heytheredelilah1987 Mon 27-Mar-17 16:25:58

Thanks mini I'll read the article. Apols for my ignorance ! Hope I don't offend anyone. This is all new to us.

Zzzz I have heard early intervention for communication is key ... nice guidelines state as much.

Heytheredelilah1987 Mon 27-Mar-17 16:26:55

I know asd is lifelong and I am not one to try and cure. Nor do I belive you can. I love my boy for who he is , but with that I also want what's best for him and his future

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