They just dont get it

[bluefish]

I am so frustrated with people simply not understanding the problems e encounters on a daily basis and the way they seem to take no notice of what I say. ie e does not like parties, they respond with dont be daft all kids like parties! When I tried to explain to my father about hfa he said " I wouldnt take it too seriously you will be laughing about this in a year" I have had it with explaining! If he looked different they wouldnt question it.

[TheNeil]

Trust me, it gets no better. If anything, the very people who are supposed to understand are often the worst. When I had to have a chat to a woman from the DWP last week about Asperger Syndrome (a chat about 'disabled' people in employment that she requested) she was totally non-plussed and genuinely surprised at what it actually means and how it 'manifests' and can affect people (in her defence she did say that she'd read a website...once ).

 

The problem is that people have great difficulty seeing beyond their own experiences and judge by their own experiences a lot of the time - if they've never experienced something, how can they understand it? That said, if people would just swallow their pride and say 'I honestly don't know about X, Y or Z - please tell me' then they might actually learn something. A lot of people assume that everybody is exactly the same as them and that everybody does things in the exact same way but until you've lived a life as somebody else, what do you have to compare things against?

 

I know from experience that even people close to you can be really dismissive but it's not always their fault. I found that when I disclosed to my mum that I'd been dx'd that she responded a lot better when I could point out the little things and go through points in great detail, constantly relating it back to what she might understand and have experienced (e.g. trying to explain about the panic that I feel in a crowd, I related that to her fear of snakes (i.e. something she can understand) and used that as a 'link').

[Karen A]

<'> <'> It is so frustrating when other people have so little awareness.I have been thinking a lot recently.

In my understanding people with ASD tend to find it difficult to be flexible.......however so often so called ''NT'' individuals are the ones who expect everyone to act in the same way and to like exactly the same things...to be honest I think some people do question things even when people look different.Karen.

[loobylou2]

<'> <'> I know exactly how you feel, its so fustrating. like you say, if our kids looked different, people would be more tolerant towards them. keep your chin up wev've all been there and understand what you're going through.

[Frangipani]

<'> <'> <'> <'>

[Mumble]

Unfortunately TheNeil's right and particularly so about people who are supposed to be 'closest' to us.

 

The problem is that we do always see the world through our own experiences (this goes for all NT & ND). Even when someone with a different perception tries to explain something, we will interpret what we hear through our own perceptions. Objectivity is not possible in dealing with perception and understanding of others - it will always be subjective, influenced by our own understandings.

 

People may empathise, but they cannot acctually know. And in empathising, they may create more problems in that they are bringing their own interpretations to bear on what they see in the way they see it. And sometimes some knowledge can be as damaging as no knowledge.

 

This Christmas will be the first time I've been home since my dx - and I'm really not looking forward to it because I now know why some things are more difficult for me but I can't use coping strategies I would normally employ - spending time on my own etc. - because my Mum refuses to accept who I am - and this is undoubtedly going to result in all sorts of arguments - the usual surrounding my coping/lack of coping with sensory stimuli plus her telling me how pathetic I am and that my dx is total nonsense. Hmm, the tinted glasses should be fun Hopefully she won't notice.

 

Sorry I didn't mean to be depressing. This discussion has come up several times. Often it's said that it's a generational thing, and I think that is part, but not all of the difficulty. From what I've seen, people will only change their perceptions or accept alternative perceptions if they want to. I don't know if we can do anything with other people. This just seems to be another type of hate/descrimination that I hope will slowly work it's way out of society, but as we know with issues such as racism and homophobia, people will retain descriminatory positions, often out of fear or needing to 'fit' a particular group. I don't know the solution to this. Sorry.

[oxgirl]

I am so frustrated with people simply not understanding the problems e encounters on a daily basis and the way they seem to take no notice of what I say. ie e does not like parties, they respond with dont be daft all kids like parties! When I tried to explain to my father about hfa he said " I wouldnt take it too seriously you will be laughing about this in a year" I have had it with explaining! If he looked different they wouldnt question it.

 

It is so hurtful, isn't it, Bluefish. The very people who's support and understanding we desperately need often can't allow themselves to hear about AS. I think this is particularly common in grandparents, who constantly tell us that 'in their day' this or that behaviour wouldn't be tolerated, etc. etc. I see that your lad is very young and I think it's that much harder for granny and granddad to 'see' problems when children are so little. Often it's a question of time, as your lad grows older maybe they will allow themselves to 'see' more and accept the situation more fully. I know this was the case with my DH's parents. They were terrified of hearing anything we had to say about our lad's AS, they didn't want to hear bad things, they wanted to pretend that he'd 'grow out of it' or that 'all children are like that', etc. etc., the same old stuff. It came to the point where I couldn't talk to them at all because they wouldn't listen to me about the very thing that was of most importance to me and I really resented it. Now, at 14, they can't hide away from his problems any longer. They are forced to see them, if you like, because they are that much more obvious now and can't be brushed under the carpet in the same way they could be when he was four.

 

It's not easy, because you need their support NOW, not when they are ready to accept and see, but sometimes you just have to let others see what they see and hope that they gain understanding in time.

In the meantime <'>

 

~ Mel ~

[pearl]

I can echo what mel says, bluefish. We were told in no uncertain terms by MIL that JP was the way he was because we'd babied him. Her knee jerk reaction was based on fear of him being labelled.

 

15 years down the line, its a very different story. She is so thrilled & proud of him, & full of praise for us for fighting hard for him, but if she'd had her way at the time we would have just let him be or given him a good smack!

 

I sometimes think I'm hearing things the way she talks now when I remember how she used to be, but I'm very glad she has changed her tune.

 

Give it time <'>

[stressedmumto2]

Bluefish I just wanted to let you know I am thinking of you <'> my son doesn't like parties too and wont explain what it is he doesn't like. This week he refused to stay at a friends tea-party (we left after about 5 mins) and he wouldn't get out of the car for his cousins disco party. My family tend to ignore it now and just say to him to stop being silly, so the understanding is not there from them, his grandma is starting to understand him more now.

 

Try not to worry too much about what your family think, I know that's easier said than done as I still get upset with my family for them not understanding, could you give your family a book about HFA for them to read, I know the National Autistic Society have some great books on their website.

 

Take care and I hope you have a good christmas <'>

[bluefish]

Bluefish I just wanted to let you know I am thinking of you <'> my son doesn't like parties too and wont explain what it is he doesn't like. This week he refused to stay at a friends tea-party (we left after about 5 mins) and he wouldn't get out of the car for his cousins disco party. My family tend to ignore it now and just say to him to stop being silly, so the understanding is not there from them, his grandma is starting to understand him more now.

 

Try not to worry too much about what your family think, I know that's easier said than done as I still get upset with my family for them not understanding, could you give your family a book about HFA for them to read, I know the National Autistic Society have some great books on their website.

 

Take care and I hope you have a good christmas <'>

Thanks so much. I have had a horrible day cant stop crying, I guess it has all caught up with me. I have been Sooo upbeat about this to everyone and have had so much going on ie Earlybird course and appointments for e that it has only just sunk in. last week e had an invite to go to a birthday party and became hysterical when I read him the invite. I took a present in to nursery for the little girl and told her mum that e was not good with parties, she said "he will be fine when he gets there" etc S many people tell me there is nothing wrong with e. I know they are trying to be kind. there seems to be such a stigma still atatched to being in any way different and I am quite sad that my dad just cant except it. Also (quick moan coming) Its Christmas and e is not interested at all! It doesnt matter as he is the most amazing little boy but today it matters to me!I thought this would be the year I heard him shout "hes been hes been!" Does that sound silly

[forbsay]

It does not sound silly at all. Sending you lots of hugs.

 

My little boy was diagnosed when he was 2.5 and showed no interest in Christmas at all. He is now 7.5 and he is alot more interested

 

PM me if you need me and remember you are not alone.

 

Take care

 

Forbsay

xx

[Karen A]

<'> <'> <'> No it does not sound silly at all.

It is very tough.

I don't know if e is at a mainstream nursery.One of the hardest things I found when Ben was first Dx was the fact that my experience felt so different to many of the other mums.People found it difficult to understand how some ''everyday'' things could be so difficult.They would try to be helpful but still say things that made me feel worse. I used to really appreciate the support group for parents at the local ASD specialist school but then felt more at home there than with the mums at school.

It is a couple of years since we first found out that Ben might have ASD and I have many good days now.But there are still momments when I feel sad that some experiences for Ben and all of the family are not what I anticipated they would be.

I have to say that I have done things I would never have done had it not been for been for Ben.I have found many fantastic people here and elsewhere.But it does not take away the ''ouch'' momments. <'> <'> Karen.

[Sallya]

..I don't think we should ever stop trying to explain..aren't we the best people to help those who don't understand..understand?? Our children can't explain for themselves so isn't that our job??

[oxgirl]

Bluefish, do you think it could be balloons that worries your lad about parties? It's just that when my lad was that age he was terrified that balloons would burst unexpectedly, he couldn't cope with the anticipation of them bursting. I took him to a party when he was four and he spent the whole time cowering on my lap in the corner, I didn't bother after that, not that he got invited anyway.

Be gentle with yourself, you have a lot of tough feelings you're dealing with and it takes time, but you'll get stronger. <'> <'>

 

~ Mel ~

Edited December 21, 2007 by oxgirl

[pearl]

JP was terrified of balloons, even if they werent inflated. We once lasted 10 seconds at a girls party, he screamed as soon as he saw the helium balloons marking each place, so I simply lobbed the kids present over to mum, & said, sorry cant stay, ring you later! Bewildered incomprehension when I rang to explain.

 

This year, at his 18th birthday meal, the waitress tied a helium balloon to his seat. He brought it home in the car, & kept it in his room till it deflated, its little corpse is still there somewhere.

 

I know its probs not much help when yours is so little yet, but things do improve.

[stressedmumto2]

Interesting about the baloons my son is the other way around, sensory seeks and loves me just buying baloons so that he can blow them up and then pop them!!

[bluefish]

E loves ballons too, I think it is going to peoples houses that he is scared of or perhaps the children the excitment and noise? hopefully as he gets a bit older he will be able to tell me what he doesnt like.

Thanks for the advice and support.I feel so much better today for having had a good cry a good moan and a good nights sleep! Lyn

[Karen A]

<'> <'> Glad you feel better today.Karen.

[bluefish]

Thanks Karen! feel a bit daft for feeling so low. I sobbed to a friend for the first time ever and really unloaded, it did me the world of good. I guess sometimes the pot needs to be emptied in order to cope! Lyn

[BusyLizzie100]

Bluefish and everyone else,

 

I had tears in my eyes reading this post because I know just how it feels.

 

We went down the park this afternoon and bumped into some friends; some little comment was made but I can't remember what, because DS1 took it upon himself to explain to them why DS2 can't do what they were talking about or reacted because of it... OK, he ended up talking AT them for ages about autism and AS, but I think they got the message!! Well done, my little Aspie !

 

Glad you're feeling better today, Bluefish. A good old cry really does the trick sometimes. I feel long overdue myself!

 

Lizzie <'>

[bluefish]

I have been in denial for so so long and had even convinced myself that the pead etc were going to tell me I had wasted their time by having e at the centre and going on the Early bird course ,I even woke one night and had drempt I had to pay money for being on the course! when I was not entitled!! Its stange when the fight for the dx is over and that was all I thought about for months, then you get it and its not what you wanted??!!!!! I dont know why I am so suprised that people just dont get it as before it affected me I am ashamed to say I knew nothing about autism and had never heard of hfa or aspergers.

I just wish when you tell people they could grasp it....

[stressedmumto2]

Bluefish I am glad you are feeling a bit better today and that you did unload, sometimes a good cry is definatly what is needed. I know the other day when we was at my friends and having to leave within a matter of minutes because son didn't want to stay at the party I felt myself welling up, thinking why can't he just enjoy it There are some very noisy enviroments he doesn't care about being in i.e. ball pit's but when it comes to visiting friends and family he just refuses, even with family members he wont get out the car sometimes.

 

You will I think go all the way through life having up's and downs and having some incrediable funny moments too, I do with my son!!

 

Sometimes I think there are some people whop will never grasp it, in my family there are some members who wont and just say he's normal and others who think he's naughty and needs a smack and then some who actually see him the way i do and who love him regardless and I think I am lucky to have just a couple in my family who do care. I am one of 5 children and only one sister really understands, my son's grandma (his dad's mum) is also really understanding too although she finds it hard to accept and it has taken time. You will find that one day there will be someone who will see what you see and care but it may take time.

 

Have a good christamas and just take each day as it comes <'>

[hobbityhole]

I am so frustrated with people simply not understanding the problems e encounters on a daily basis and the way they seem to take no notice of what I say. ie e does not like parties, they respond with dont be daft all kids like parties! When I tried to explain to my father about hfa he said " I wouldnt take it too seriously you will be laughing about this in a year" I have had it with explaining! If he looked different they wouldnt question it.

 

 

Hi there, apologies for being last in long line of replies but 1st time in ages I've had chance to log on due to ds December onset anxieties & viruses etc! I know exactly where you are coming from - my son was diagnosed with HFA in August 2006 so when he was 3 - prior to that I'd been banging my head against a brick wall with the so called health professionals, told it was our parenting skills, sent on parenting course by 'know-it-all' health visitors. It was me bursting into tears in fromt of my son's pre-school teachers that finally got things moving - they said they'd known right from the word go that something wasn't right but due to legal rules couldn't tell me until I broached it with them. Got sick of being told 'that's boys for you' or 'he's ok with me' or the worst at that time 'it's because he's an only child you need another!' As you say, I needed support from the grandparents and didn't get it - I still get even now - 'well, he's not daft is he?' 'He's very clever' 'He'll grow out of it'. I even tried to get them to read books or info leaflets about it but they said there was too much for them to read or they didn't understand it. They still don't think before they open their mouths and say really silly things to my son. The worst was the supermarket - it freaks my son due to the noise and the lights and well meaning people who think he is so cute that they must ask him questions - he just looks at them and if he does reply - it'll be something like my Daddy's mum died. He used to kick off all the time in shops and I got so fed up trying to justify his behaviour to older people who asked me things like 'is he deaf, is that why he's screaming/shrieking and banging his head or sweeping things off shelves?' It does get better or at least it has for me. I had the help of my son's pre school who put me in touch with The TOPS project and he has come on leaps and bounds. There was no Earlybird project near where we lived and no support groups so it's been rough but keep smiling through the tough times and focus on little positive things that your child does - they are that bit more precious as these kids try so hard to fit into our world. Like you say, I often feel ppl would be a bit more sympathetic and think more if he had a limb missing or something but I now accept my son for who he is - an active, intelligent, fun individual with a bit of quirkiness thrown in, life would be boring if we were all the same (even if it would be easier and less frustrating at times!) chin up - contact me if you need a shoulder to sob on as I've been there a heck of a lot! <'>

[brooke]

Im a bit late in coming to this too. I know just how you feel <'> We had inlaws staying over xmas and although i knew they doubted ds1 diagnosis they'd never realy said too much untill now. The first night they were here FIL turns round and says "well i dont think Ds1 has autism I couldnt belive my ears. I just said "there is a huge spectrum and ds1 happens to be on the high end, that doesnt mean he doesnt have difficulties you just dont see them in the same way you would a child on the low end of the spectrum" and that was that but it is so frustrating that they just pretend that there is nothing wrong At one point i would have been very upset by a comment like that but i think i dealt with it well and didnt feel much resentment towards them as it doesnt matter what they think. He has his diagnosis and placement at school and all the understanding he needs from us and school so ive tried not to think about it. I dont know how they cant see his problems but i think they are still in denial. It is very sad though when the people who are closet to you dont even belive what is going on

[Clare63]

I seemed to have missed this thread, so sorry I am late, I can only agree, I understand totally where you are coming from. I feel so bad for all those years I tried to force DS to parties and the like, only to realise now what I put him through, rather than listening to myself I let other influence my parenting. As adults we are able to choose which social activities we do and do not like, yet children are expected to like them all.

 

Thinking of you Bluefish...

 

<'> <'> <'>

 

Clare x x x

[anita81]

there were only 2 people who were understanding when flynn started showing he was "different".Surprisingly it was my health visitor,who got him reffered for assesments straight away.My nan,bless hear,understood and always said "your his mum and u know when theres something not right".shes the last person i thought would understand(you know what the older generation are like!).my mum on the other hand always claimed i was making it up,or he was spoilt.shes been like this sinse his diagnosis nearly 3 years ago.so i decided to write a blog on myspace,and ask my mum to come to tesco with us .

heres the result:

http://blog.myspace.com/index.cfm?fuseacti...logID=286231027

 

She needed to see the real flynn so i took her on an hour long,meltown,laying in the eisles,trying to eat people that came near him filled shopping trip!!as you can see,she seems to know what i have to go through on a regular basis.shes even offered to have him for the weekend to let me have a break!!

so to the people who say to you "all kids like parties",ask them if they want to take your child to the party.they wont say it again !!

[bluefish]

there were only 2 people who were understanding when flynn started showing he was "different".Surprisingly it was my health visitor,who got him reffered for assesments straight away.My nan,bless hear,understood and always said "your his mum and u know when theres something not right".shes the last person i thought would understand(you know what the older generation are like!).my mum on the other hand always claimed i was making it up,or he was spoilt.shes been like this sinse his diagnosis nearly 3 years ago.so i decided to write a blog on myspace,and ask my mum to come to tesco with us .

heres the result:

http://blog.myspace.com/index.cfm?fuseacti...logID=286231027

 

She needed to see the real flynn so i took her on an hour long,meltown,laying in the eisles,trying to eat people that came near him filled shopping trip!!as you can see,she seems to know what i have to go through on a regular basis.shes even offered to have him for the weekend to let me have a break!!

so to the people who say to you "all kids like parties",ask them if they want to take your child to the party.they wont say it again !!

Hi anita81 and everyone

I have just sobbed and laughed through your post, All of you understand and that feels so good I cant tell you!

Christmas was fine,I didn't wrap anything for e and just bought Thomas stuff for his ever growing track he enjoyed his day as did I as I did not expect anything and that made it easy for us both. We went for a walk before lunch and went through the town all the shops were closed and E went into a blind panic it was awful! at that point I thought I guess some people will never understand that my son could become so frightened by something so trivial to most! Happy New Year x

[allsetuk]

ive pretty much isolated myself from people , especially family in terms of my sons ASD/ADHD, if one more person says , "its becuase his father isnt around " or "Youve been too easy on him, leave him with me for a week and il whip him into shape " ...these are the kind of things ive had said to me more frequently than i care to mention, it makes me so mad. no one has a clue do they unless they live it

[Pippin]

My in-laws are forever saying "I wouldnt let him behave like that" or suchlike. But when he went to stay with them for a few days they wimped out after 2 and said he wanted to come home...we soon got the truth out of him.........but it doesn't stop them blaming us. My parents were both so understanding about him but they're both dead now and all we have is the ******** in-laws!

[hev]

im soooo glad that stevens dads family disowned us when we split,that sounds terrible but that was before steve dx and they would have had a field day going on about my parenting,they used to go on about it when he was 2 so i dread to think what they would think of it all now!