My whole world is falling apart

[sleepyhorse]

Hi there

Gosh don't know where to start....please bare with me
DS1 is going to be 3 next week and has language delay (says about 20 single words and his speech is very poor - only we can understand what he is saying!)

So he has been seeing SALT since March and has had about 4 sessions so far. The therapist hasn't mentioned the word Autism to us as presumably she's not in a position to make that judgement, however she made her concerns for him very clear by session 2 - saying that his eye contact is reduced, has short attention span etc etc and as a result she has referred him to a paedetrician. We now have an appointment for him in June which Im dreading as unfortunately Im not dealing with all this very well. Im really trying to be strong and positive but I keep bursting into tears and just feel like Im in such a dark place. Keep hoping Im going to wake up from a bad dream!

It's clear he has issues but DH seems to be in denial....keeps saying he is fine, that he just has a language delay and that it will all be ok. Whenever I point out to him that he is spinning again...he tells me that all kids spin and thats part of being a child. Then I point out that is banging his head on us...he tells me he is just doing it for attention. He does admit however, that the constant tantrums are a worry. Also he walks on his tip toes and ocasionally hand flaps...but again DH said its normal as he is excited. I would like nothing more than for DH to be right, I really would but right now when I see that DS is ticking all the boxes for ASD I can't see that Im going to be wrong here. I know it doesn't help that i am constantly going on the internet, I am literally driving myself crazy!

Then I will have days where I do think I'm imagining it. Family members will call me up and convince me that he so isn't ASD because when we were on holiday he would throw things in the pool and look straight at us to see our reaction, that he is affectionate, happy, understands and follows instructions etc etc. Then they remind me also that he can't be that bad if nursery aren't concerned about him (he only attends 2 morning a week though so don't see that much of him). So then I will feel all positive again and that its all in my head.

And now to top things up we are having major money worries, struggling to pay mortgage etc etc but thats another story! But now because of the money stress in addition to everything else, things in this house are really bad right now and DH and I are constantly arguing. And tonight was the last straw when we decided we are going to have to cancel DS1 and DS2 joint birthday party next week as just can't afford. Feel so guilty that we are having to do this to our gorgeous little boys.

Sorry I know there are people on here with much worse problems so excuse me if I sound dramatic but I just needed to let it all out as just don't feel like I can cope anymore. Just feel like running away right now. How is one supposed to cope with the not knowing? And if he is diagnosed with this, will I find strength from somewhere to cope?

Thanks for listening :-)

amberlight, that's a brilliant explanation. Thank you for sharing it.

amber Thats what confuses me though....he is so affectionate! From what little I know of ASD one of the main symptoms seems to be "emotional detachment" (?) (lack of eye contact/not being abel to read facial expressions etc)

He is constantly telling us he loves us and is very cuddly and snuggly BUT last week my dnephews other nan died very suddenly - she was only just 50 Ds1 knows this...and yet he has not once asked about it/seemed upset. Whereas the other night he - yet again! - mentioned that damn ball he lost on hols 2 years ago!!!!!

He loves nature documentaries...we have EVERY David Attenborough dvd there is!!! and will quite happily watch some poor animal get eaten/torn apart by a rampaging lion/crocodile BUT cannot watch a cartoon of the same thing....eg: the jungle book/madagascar etc Its so odd. I just dont get it. Surely it should be the other way around???? Surely he should be ok with cartoons (that arent real) and more scared of real footage????

I feel like I dont understand anything

Can I ask...what is "stimming"???

Becaroo, the whole of autism can be summarised as "too much and too little". Depending on which bits of the brain wiring we've managed to connect up manually, we're either going to be lightning-fast at recognising something and responding to it, or so painfully slow that it defines all belief.

There is a myth that we're all emotionally detached. Many of us are the exact opposite - overfriendly. It has its own risks. Again, it's all to do with 'too much, too little' and you'll see it over and over again in the responses of children on the autism spectrum. There are many mysteries and even I can't explain all of what makes me 'me' - there aren't the right words for it.

Stimming is what many of us do as either a way to work out where our bodies are, or to calm down. It's any repetitive movement/sound/action, e.g. rocking, hand flapping, spinning, etc.

You explain things so well!

Would "stimming" include "prancing" on tip toe up and down the room (pretty much constantly?? Ds1 also has quite rigid hand movements/arm movements at times too.

Yup, any repetitive action counts. Working out which bit of us is 'us' and which bits are 'something else/someone else' is harder than it looks. Stimming can play an important part in keeping us focused on which bits are us (the bit that's moving).

I see.

He has always done it....the tip toe walking, the "prancing", the arm movements etc More so when excited/agitated (?)

I guess we are used to it, but I know it looks odd/strange to others (SILs new boyfriend commented on it recently) and he doesnt really do it at school AFAIK

I suppose I have always felt that there was something but teachers/TAs/SENCOs etc have always made me feel like an idiot for voicing my concerns

Becaroo, I'm on a steep learning curve and am by no means an asd expert, but it seems to me that there's a difference between affection and empathy.

Ds1 is and always has been extremely affectionate with close family and friends, and I don't think it runs into being inappropriately over-affectionate, although he did go through a phase of yelling that he loved me, e.g. while in the middle of a preschool sports day egg and spoon race Can't say iminded too much. But now he's 5, it seems to me that he's having to study how to take someone else's perspective- like amberlight said so well, it's not that he can't do it, it just has to be learnt so it's effortful, whereas it comes naturally to most people. For example, he's learned (off his own bat) that if I've had a bad night with the baby, a cuddle from him usually puts a smile back on his face.

So I think it can be subtle, and certainly not all asd kids are emotionally detached.

my face

All of ds's preschool carers have looked at me like I'm mad when I've voiced concerns too.. Paediatrician's taking us seriously though.

ahh..he sounds very sweet woofie

Yes. I think you are right. Affection and empathy are different. Like yesterday, he cried because my dnephews wobbly tooth fell out when they were wrestling....not sure if it was due to empathy though...I think he thought he was in trouble!

(he wasnt)

I think ds1's problems are very subtle...not at all obvious unless you spend time with him/teach him.

He has an amazing vocabulary....he can remember facts and figures better than me...yes, a 7 year old is better at maths than me but its like english is not instinctive to him IYSWIM?

Thanks for the replies, it really helps x

Becaroooo, yup re the language thing not being instinctive to a good number of us. For the first 20-odd years of my life I had to think carefully before saying anything at all, and even now if I'm in a strange environment I have to rehearse sentences in my head before saying them out loud. It's because I see words as pictures, so I'm fine with 'tree' 'car' etc, but what the heck is a 'to be' and what does it look like? Any words that don't make pictures are really hard to know how to use. Concept words can be almost impossible to understand. But maths, symbols, pictures etc - easy. Not the case for everyone, but certainly our visual skills are generally hugely better than our verbal ones, especially for talking about emotions etc.

Thanks becaroo- he is! Your ds sounds quite similar to mine in some ways. I can imagine ds having a similar response to someone he didn't know very well dying suddenly. I always notice that if we're talking about smth that provokes empathy, eg recently evacuee children in WW2, he studies my face, as if he realises that an emotional response is required but isn't sure what it should be, then mimics my facial expression.

Ds1 also good at maths and words, though I wonder how he'll get on when they start doing creative writing at school.

It's great that they have these strengths, but it does make spotting the difficulties harder.

Sleepyhorse, I hope you've found some comfort from this, I have so thank you for being brave enough to post. We are at a similar stage, our son is 3, has only 2 clear words, and we're in the awful waiting stage. Had first paediatrician appointment, now waiting for lots of other assessments before some sort of diagnosis meeting.

It's being in limbo that hurts. I don't even feel we can start dealing with it, cos we don't know what 'it' is. My husband isn't dealing with it at all, and gets stressed out anytime we attempt to go out as a family. But we have 2 other children, so we have to keep going somehow.

Each day I'm feeling a little stronger and I'm sure you will too. I'm trying to remind myself it's ok to feel rubbish, that this "grieving process" is normal, and giving ourselves time to acknowledge it's hard and hurtful is probably the way to coming out the other side ready to get on with it.

Sorry if that makes no sense! But wish you lots of luck and hugs x