Aspies For Freedom

Oh my gosh - that article was - well unreadable - too many "like an invasive weed" similes --- The right treatment (and by that I mean treating a kid right), treating him correctly, with respect, compassion and empathy, understanding his sensory issues, setting him up for success, not pushing him too fast. The only hard part for parents is being misundestood and/or fighting with so called professionals that think like autism speaks and worse seeing no positives and they want to change who your kid is. That is stressful to the kid and hurts a kid, that in turn hurts the parents. AND in the US - medical coverage is not free. That is a problem for parents of any kid. Shame on us (the US) for stressing parents out with bills they cannot afford to pay but can't afford not to.

EvilZakkie Wrote:

atypical Wrote:

Shame on us (the US) for stressing parents out with bills they cannot afford to pay but can't afford not to.

I will point out that the therapy they mentioned is ABA, and the reason they "can't afford" it is because they're expected to put their child through 20-40 hours of it a week.
Given that much of this time is usually spent on "normalising" activities (removing stims, demanding eye contact, etc), it's entirely unnecessary and borderline abusive to do so.

ahhhh, sorry, I stopped reading after it seemed to be the same old genre of pity. I could not agree with you more - absurd "full-time" brainwashing isn't worth a dime, in fact to my way of thinking forcing change is abuse. Love, kindness and inelligent finesse is quite different -
First do no harm. hipocratic oath

atypical Wrote:

EvilZakkie Wrote:

atypical Wrote:

Shame on us (the US) for stressing parents out with bills they cannot afford to pay but can't afford not to.

OOPS sorry, to be clear - I stopped reading the article as I sadly knew there was nothing I could do for those written about - that is what I meant by genre of pity.

Note to self: Must be careful not to post too quickly and unintentionally be taken out of context.

DogBrain Wrote:

What about that other group--Autistic parents!?

Well, what if you have sensory problems and your kid screams all the time? It's difficult no matter who you are, raising an autistic kid. Depending, of course, on the kid.

Honestly, it is hard; unless they're fudging stats the only problem I see with this article is the rhetoric. I really don't like rhetoric.

GuessWho Wrote:

When we had enough of the Saddam family on CNN, we went to the movie theater to watch the Addams family. I love the 90s.

the 90's were great but i REALLY miss the 80's. some of the best times of my life....i actually bought part of the addams family box set a few months back Smile

wow! carolyn jones (morticia) had an interesting life. i didn't know she was in so many films:

http://en.wikipedia.org/wiki/Carolyn_Jones

Callista Wrote:

Okay. This article has all the usual hyperbole and sensationalism--that's obvious. But there is an issue here that's real, and that is the fact that parents suffer when their autistic kids are rejected, stereotyped, etc.; and they suffer when there is too much to do to raise the child and nobody helps them. Autism almost always means "difficult child" as well as "isolated parent". And that's a state of affairs that shouldn't continue.

When you have an autistic child and you go to the grocery store and that child has a meltdown, most other people have no idea they are looking at a scared, overwhelmed child. They think they are looking at a spoiled brat. You may be left out of the "parents' groups" that form around children's activities because your child doesn't have the skills or stress-tolerance to participate; and even when he can, you will always feel different because your child is different. For a neurotypical parent, the shunning for being "a bad parent" can be truly painful. They feel shut out of other parents' lives, isolated, because there's a stigma attached to disability that makes it hard to talk about life as an autism parent, hard to be open, hard to brag about your child's accomplishments or talk about their day. Most moms with typical kids will just look at them with pity or deluge them with the latest fad autism cures.

For high-functioning kids, the moms will get things like, "You just need to discipline him better." Being told you are a bad mother is very painful when you are trying as hard as, or harder than, everyone else. And remember, these are neurotypical moms. They NEED that social contact the way we need food and water. The reputation of autism shuts them out of a lot of social groups.

On top of that, raising an autistic child can be hard work. I've heard it described as "parenting squared". Maybe your child is an insomniac--sleeps four hours a night on a good day. Maybe your child doesn't have a good sense of danger, and you're forever having to pick him out of trees and make sure he doesn't run onto the highway. Maybe he has frequent meltdowns, and you're getting headaches from the screams and beating yourself up because you don't know what's wrong and you so desperately want to make it better. You need a break, but you can't figure out where to get one, and when your stress level rises, your child's stress increases too and things get worse. You have to deal with the school system, which probably wants to do the bare minimum. You have to deal with relatives who think anything from "He needs discipline" to "Find a good residential placement; he's ruining your life."

And everybody seems to want to pity you and tell you your child is either an angel or a demon, either has to "overcome" his autism or else will never amount to anything. You have to deal with the knowledge that your child is being bullied at school. You have to wrestle with special ed teachers who would rather just warehouse the child than teach him anything. And most likely you have to do all that alone, because autism's reputation doesn't leave much room for a reaction other than pity and subtle but ever-present shunning. And when you need a break, how do you get one? Getting someone to take care of a special needs kid is more than just calling up the neighborhood babysitter. Respite care is expensive or unavailable in many places; or else it's allotted in such tiny increments that it might as well not be there--two hours a month was one figure I heard. And then you have to wonder: If my child is not independent in adulthood, can I expect that he will be treated with respect by anyone who assists him? What happens if I die? How do I know if he's being abused or belittled or ignored?

Autistic people do suffer from the prejudice we get. But so do our parents. There's not enough support; they're not included in the community; and in general there's much more trouble coming from prejudice and isolation than there ever was from autism itself.

Very true, true enough.

But what GuessWho said/ wrote :" am guessing maybe the little kid has sensory overload issues of some sort and the outburst is not knowing how to deal with it. " ***** is right - just don't try to "make" your kid sit at a restaurant or try to "handle" parties etc., leave him/her somewhere comfrotable and safe until they show you they can - a little at a time - I wish (yup wishing and should again) people wouldn't "Expect" and have "expectations" and set arbitrary timelines for "compliance". I don't think that is helping (in my opinion)this particular kid. And as far as parents not being included in a community or isolation for the parents - I don't think that is true (or that it need be true) at all - they are adults they can plan and adjust and facilitate their own lives without making it seem or feel like a burden. If their kid is made to try to change and work hard- why not the parents - it doesn't cost anything to research at the library, ingenuity is free. They are responsible for their own happiness - and if they don't nourish themselves, (and their marriage) how can they be whole enough to properly love and parent. Just my opinion, I only walk in my own shoes after all.

By the way, I probably wasn't clear - and I may be WAAAY off, but I think that sensory issues are the #1 issue - remove the strain of them and I don't think the kid would act so out of hand. Oh I meant to suggest - I know people cannot pay for and arrange for sitters when they have to get groceries - I am hoping that it is a two parent home - but if it isn't a two parent home or not much family - go at night or when it is quiet - that is what I mean by ingenuity.

Also, I have never looked into it - but if your kid is DX'd and you don't have money and you are a single parent - I am guessing that there are programs and money available so that a parent can stay home with her child? no? Isn't that what SSDI, social security disability income is? (in the USA) I agree when you are rich you are better off and it is tough to be in the middle - cuz you make too much to qualify .. okay callista it is hard.

Tigger_the_Wing Wrote:

Great post, Callista!

I recently saw a small boy having a melt-down outside the supermarket. I could see he was trying to pull a toy out of the bag in the tray under his sister's pram. I went over and squatted so I was his height and calmly asked him if he wanted the toy. I asked him if he had asked his mummy nicely for it. He stopped sobbing and looked at his mum, and said "Please". She simply said "No." So I explained to the lad that it would not be a good idea to take the toy as it could be broken or lost on the way home. He accepted that, and turned to his mum for contact. She, poor thing, looked exhausted. I told her that I have four autistic sons, and they all need proper explanations. I hope that I helped her more than all the other passing shoppers who had tut-tutted. Her face was a picture. I wonder if she had thought of autism before, because her expression wasn't one of denial that her son could be autistic; more like "If a stranger can see he's autistic, perhaps I need to take it seriously" Or perhaps I'm not very good at reading facial expressions! Tongue

She certainly didn't argue with me; indeed she simply left, looking thoughtful (and very, very tired).

A little while later I saw an NT child throwing a tantrum outside another shop. It was quite obviously the behaviour of someone well aware of the effect their behaviour was having on the accompanying adults; both of whom were treating the display with good humour and a refusal to give in to the demands (again a dispute over a toy, this time one the child had brought with her and no longer wished to carry).

I was a little surprised by the title of the original article. I had got the impression that a lot of modern parents were brought up as little princes and princesses by permissive parents and simply couldn't cope with the idea that the world doesn't actually revolve around them; & that their children won't accede to their demands the way their parents did. I think now that I was being a bit harsh. Raising any child is hard work and I think that the popular view (encouraged by advertising and entertainment) that it should be easy and predictable does no-one any favours.

I just didn't think that parents were 'hidden' victims because all the propoganda I have read recently has been weighted in favour of the parents being 'victims' of their child's autism; rather than the child being a victim of misplaced expectations and wrong (for an autist) child-rearing practices.

Tigger - I couldn't pick just one line or paragraph to focus on here - so I will just say - Bravo! you have just explained the way the world goes around better than anyone -

and that part in bold is so well put - that is exactly how I feel as well.  Dreaded expectations!

and earthmonkeywrote:"I certainly don't fault parents who have a difficult time understanding/negotiating life with their autistic kid(s). I just don't like the pity atmosphere, which as you've mentioned only works to accomplish negative things for the autistic people and families. My mom got so exhausted, and so frustrated, and got really worn down raising me, but she never would want this kind of talk of tragedy, before and after diagnosis.

and was it Zed that said:** "The only way they (parents)become 'victims' is if they MAKE themselves a victim" true enough"** - though many cooler heads have clarified that feeling like one isn't always the same as actually succumbing to acting like one.
And the absolute (only) certainly doesn't apply, but what will this thread do for those parents who are unlucky enought to have their specific situation be untenable? Those that are abused by insuracne companies, those that themselves weren't lucky as children to be born into a family with money and therefore don't have obvious innate confidence...etc., I digress...

ZED wrote: "There is little point in serving warm food to a child who has such an adverse reaction. If cooked food is essential, then it should be prepared well in advance eg the day before. For any meal, the plate can be chilled while food is being prepared."

seriously right on -(this may sound bad, sorry) It doesn't take a rocket scientist to figure out that your child (MY SON) doesn't eat the food when it is warm (or chunky or juice with pulp)- day one, didn't eat it - 20 minutes later - eats it, the next day I served his food cold.  Also I served his food not touching each other - why CAUSE stress over such minor things?

WHo wrote this bit, was it Zed again : ***" It has nothing to do with tantrums; the child is distraught. He probably sleeps badly, eats little, and has sensory perceptual difficulties. If you can imagine going to a shopping centre toy sale on Christmas Eve, when you have a migraine, insufficient money, no sleep, and there are flashing lights, loud noise, people everywhere, bad smells, it's very hot inside, you haven't been eating for the past few days because of a tummy bug, and your family are angry and upset, then you might have a glimpse of what the poor kid goes through whenever he comes out of his bedroom. Professor Tony Attwood fronm Queensland in Australia says that we are 'not autistic when we are alone'."*****

I have had to explain to our non-aspie (though I don't think our son#2 is an NT exactly - might be atypical like me) alot lately about Fair is not always Equal - as our aspie has lately been having some "minor" (not to him) troubles self-modulating and compensating because of outside sensory and other factors at school - and is venting at home - ... so we have been requiring less of our aspie 11 year old and our 9 year old is like, (no fair - aren't you going to DO something about that!) hey I'm stressed too, you think school is a picnic for me, these kids are nuts! I just told him (paraphrased) this exact thing last night - what Zed wrote about what it would feel like to him - would we ask/require/expect HIM to do A, B or C if he was feeling like THATwhen we required our 9 year old come out to a mass last night (hour long May crowning/rosary) and didn't make his older brother come.

BUT how to help those parents who can't see their ways clear - all on here have it figured out - it seems.  How to get Tiggers message out there or Zed's or earthmonkeys attitudinal suggestion... ?

Ivar T Wrote:

Kinda harsh calling people bad parents, everyone can learn to do better though - often with abit of help.

Like Ivar said...

Callista Wrote:

Or being able to tolerate it, even if you can do it. Learned to take showers at eight... didn't learn to tolerate them (or take less than two hours) 'til eighteen.

Our son barely tolerates getting his hair washed - it's so hard for him. Last month he suggested he wear swim goggles - I can't see how it helps, but he submits himself better. He likes baths but not washing his hair in the bath.... My husband and I have been mentioning this idea to our 11 year old , like once a week suggesting... um, well how about a shower, it's getting warm out you're getting older... He's not interested - he says, well our pool will be open soon... (no shmapoo in the ppol though so it doesn't count ya know?) I figure just like everything else, when he can, he can. He does care baout what he looks like, he likes to keep his face and skin and hands very clean - and will not tolerate body odor - but his hair-- it's been getting pily fast... I'm sure I'll miss washing his hair someday.

oily... soory about typing errors.

Anyone, have hard time having their hair wet? Our ds won't go to bed with wet hair - can't wash his hair wth clothing on- he doesn't want his clothes to get wet, but not in the bath either...can't put his shirt on over wet hair - has taken to covering his head with a towel and wriggling into his open collared shirts. I realize these quirks and others I may have mentioned may make our son sound difficult or complicated. But, really these idiosyncroses are charming and not really any trouble. His routines are just different then mine, but I am not rasing a dupliate of me and how boring would that be?!

alectrum Wrote:

atypical Wrote:

Callista Wrote:

Or being able to tolerate it, even if you can do it. Learned to take showers at eight... didn't learn to tolerate them (or take less than two hours) 'til eighteen.

Our son barely tolerates getting his hair washed - it's so hard for him. Last month he suggested he wear swim goggles - I can't see how it helps, but he submits himself better. He likes baths but not washing his hair in the bath.... My husband and I have been mentioning this idea to our 11 year old , like once a week suggesting... um, well how about a shower, it's getting warm out you're getting older... He's not interested - he says, well our pool will be open soon... (no shmapoo in the pool though so it doesn't count ya know?) I figure just like everything else, when he can, he can. He does care baout what he looks like, he likes to keep his face and skin and hands very clean - and will not tolerate body odor - but his hair-- it's been getting oily fast... I'm sure I'll miss washing his hair someday.

I've just had a bit of a mad idea involving cutting the top of a cap and leaving the peak so that the soapy water doesn't run on his face and he can still get his hair washed.

even whenhe is at the hair salon they wash his hair and he dosn't get wet at all.. It's about his perception/worry that he might get wet (I think). We actually put in a pool, it helped him get over alot of water concerns - he swims under water and gets all wet - he just doesn;t seem to like having only one part wet... fine with me.

Do you mean a swim cap? He is a big inventor, I may give one to him and see what he comes up with.. he is motivated tomake the prcess better. I am hoping he will just shower (alone) eventually wouldn't he then have control of the water?

Yup, not worried -

Callistas post rang true for me is all - he is probably on course for age 18 LOL! Sure marches to his own beat!

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