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Other people playing down DS's problems

(9 Posts)
Shakirasma Sat 08-Oct-11 23:36:13

it has long been apparent that DS's development is severely delayed and 9 days ago he was diagnosed with ASD. It was no shock but I am heartbroken and scared for his future.

So over the couse of the last week we have been telling family and friends the news and every single one on them has said 'oh, but he must only have it mild' then they reel off a list of things he can do, so therefore in their opinion it's not a big deal. Or they give anecdotes of distant friends and relatives whos autistic child was like this, that or the other and start comparing him.
I then feel like I have to justify his diagnosis by reminding them of all he cannot do, it's just so dam depressing.

I want their support in the fight to get him all the help he needs. I want them to see how hard things are at times, to see my pain.

Sorry, just having a rant. It's all so fresh. I am a parent of a SN child and I feel like Im now a member of a club I never asked to join. And I feel so alone because I don't know any other SN parents in RL, and although my support network do care they just don't really have a clue.

WetAugust Sat 08-Oct-11 23:41:53

Hi Shakirasma - and welcome.

Sometimes relatives etc play it down in the misguided thought that they are cheering you up!

They'll never understand just how much you have to deal with every day - they are not living with it as you are.

This board is a very useful place for SN parents to ask advice or just come for vent when things get on top of us.

Just keep battling on as we do smile

MangoMonster Sun 09-Oct-11 08:45:37

shakirasma, I feel exactly the same sometimes. This board has been a great help to me though and my family are more supportive by the week.

I think people have a natural reaction to down play it, I probably would too but having been on the receiving end of it, I know it can be frustrating at an already stressful and worrying time.

dottynosleep Sun 09-Oct-11 09:23:49

Hi Shakirasma, I'm sorry to hear about the diagnosis it is a very traumatic time sad

I think what you're experiencing with family members is quite common; a combination of their grief & fear, denial & perhaps a misguided attempt to cheer you up. My parents in law are still in complete denial about my son's difficulties & believe he is 'perfectly normal' despite reams of evidence. My parents are slightly more realistic but still hope that it will all magically get better. After diagnosis I found myself in the strange position of having to support everyone else.

Stick around, I've been (mostly lurking) here for years & have found it a better source of information than any thing the NHS or LA have provided.

Shakirasma Sun 09-Oct-11 10:12:00

Thank you all for your comments.

It really is helpful to know that others understand. I will stick around smile

fanjoforthemammaries7850 Sun 09-Oct-11 10:15:49 DD has severe autism and learning difficulties..and my family keep telling me she is a "genius".

willowthecat Sun 09-Oct-11 11:52:59

Unfortunately, it is as others have said, entirely typical an normal for family members to downplay and to offer cheerful advice 'He probably won't even be autistic by Christmas' etc. It is an area of life that really needs more research and is something that if (and it's a big if) professionals were doing their job, they would warn parents of what lies ahead and how to deal with it. As dotty says, you have to work out a way to cope with their incapacity to face up to things at the same as coping with your own feelings. You could try telling them directly that you don't find false re assurances helpful and that really they are actually quite destructive.

jandymaccomesback Sun 09-Oct-11 17:20:40

I think most people face this. Grandparents, in particular, seem to find it hard. This is possibly because Autistic Spectrum Disorders weren't recognised until comparatively recently. They probably think they are being helpful and "looking on the positive side", not realising how lonely it makes you feel.
We just didn't tell people (apart from professionals and a very few friends) how bad DS was when he was at his worst, and that probably made them think everything was OK.
Support groups in RL can be a mixed blessing. Often the people who are most vocal are the ones with problems that seem relatively minor. I went to one where all a mother talked about was her DS' refusal to do homework. At the time mine was throwing furniture and threatening us with knives. I just felt even more down as a result. (He doesn't do that now by the way.)

Becaroooo Sun 09-Oct-11 17:38:39

Yes, I think GPs are the worst in this respect. My PILs have found it very difficult to accept that ds1 has problems and that he is anything other than "normal".

Also, friends you dont see to often can be tricky....have to say its got better for me with one friend recently as, instead of saying "oh yes everything's fine!" as I ususally do I actually told her how hard it is atm.

I told her what we have to go through every day and how hard it is to even go out. Dont think she will be making any silly helpful comments again any time soon!!!

And its important to realise that they are trying to be positive and point out your dc's good points....they dont understand that it feels like by doing so they are denying the very difficult issues we and our dc have to deal with every day.

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