Feedback sought from caregivers of kids with an ASD and/or intellectual disability

[Number One]

Natasha Browne is currently completing her Master’s Thesis in Psychology.

She wants feedback from anyone who has a child with a disability living with them (caregivers and/or siblings).

"The thesis project is aimed at identifying the difference in quality of life for caregivers of children with Autistic Spectrum Disorder and/or an Intellectual Disability when compared to caregivers of children without these conditions.

This study hopes to highlight not only areas that need addressing, but also to highlight the positive aspects of the caregiving role. We are not assuming that quality of life is in any way lessened by having a child with a disability to care for—in fact many families report a whole host of positive outcomes.

However we are especially interested in your feelings about the kinds of supports and service you receive.
Finding out more about how support services might be improved is one of the goals of this research project."

To read more about and complete the questionnaire click HERE (http://psych-research.massey.ac.nz/browne/index.htm)

[scissorhands]

My ex girlfriend who won a scholaship to Saint Cuths is still living with her mother, who's autistic brightspark nutso as well. So yeah, their both intelligent mental as fuck man hunting women, now with a baby in the house(not mine).

Fortunately for you, privacy laws forbid me from divulging further

[riffer]

Grrr.

Autistic Spectrum Disorders are NOT disabilities.

[Number One]

Autistic Spectrum Disorders are NOT disabilities.

I both agree and disagree with you good sir. It shouldn't be seen as something that makes a person considered 'less than' - however the harsh reality is that most of society seems comfortable recognising and valuing only 'NT' (Neurotypical) type behaviours and so if you don't fit into that thin band of 'normal' (I call it MUGGLE) you don't fit and often are not included or even welcomed.

I think this quote from a speech I read recently summed it up well for me....

"The idea that disability involves a personal deficit requiring treatment in separate settings is challenged by the New Zealand Disability Strategy. The Strategy sees disability results from environments that are designed to meet the needs and wishes of a non-disabled majority and that may therefore exclude the disabled."

BTW - I spoke at length with this lady today via phone. She is genuine, mothers an ASD girl herself and is serious about advocating for special needs kids (and their parents) rights.

Please if you are able to help do but be aware (it's not very clear unfortunately) that you need to complete it as part of a pair. That is I the mother of a special needs kid complete it and then have to get a friend who is the caregiver of an 'apparently normal' kid to also complete it. You are asked to choose a word that the other person can also use to have the results linked up and tracked for reporting. Without that other person your comments won't be included in the findings.

BTW Scissorhands - your post sounds like that of a nasty small minded muggle...clearly the nutso was good enough to go out with, and have a relationship with...sorry to be blunt but that kind of talk is really unhelpful and it fuels nasty and ignorant people and allows them to feel and act superior towards non muggles.

Anyway how the hell is it that as a society we are more aware and yet less tolerant! How we manage diversity as a society is so shite....humans suck

[scissorhands]

I both agree and disagree with you good sir. It shouldn't be seen as something that makes a person considered 'less than' - however the harsh reality is that most of society seems comfortable recognising and valuing only 'NT' (Neurotypical) type behaviours and so if you don't fit into that thin band of 'normal' (I call it MUGGLE) you don't fit and often are not included or even welcomed.

I think this quote from a speech I read recently summed it up well for me....

"The idea that disability involves a personal deficit requiring treatment in separate settings is challenged by the New Zealand Disability Strategy. The Strategy sees disability results from environments that are designed to meet the needs and wishes of a non-disabled majority and that may therefore exclude the disabled."

BTW - I spoke at length with this lady today via phone. She is genuine, mothers an ASD girl herself and is serious about advocating for special needs kids (and their parents) rights.

Please if you are able to help do but be aware (it's not very clear unfortunately) that you need to complete it as part of a pair. That is I the mother of a special needs kid complete it and then have to get a friend who is the caregiver of an 'apparently normal' kid to also complete it. You are asked to choose a word that the other person can also use to have the results linked up and tracked for reporting. Without that other person your comments won't be included in the findings.

BTW Scissorhands - your post sounds like that of a nasty small minded muggle...clearly the nutso was good enough to go out with, and have a relationship with...sorry to be blunt but that kind of talk is really unhelpful and it fuels nasty and ignorant people and allows them to feel and act superior towards non muggles.

Anyway how the hell is it that as a society we are more aware and yet less tolerant! How we manage diversity as a society is so shite....humans suck

Thanks for the heads up #1. True I have been negative and cynical this week, I appreciate the admonishing:yes: beneath my blokey scorn I hold a deep appreciation of these women...even if they screwed most of my mates

You close extremely disappointed... its always a battle for me to exorcise my mugglyness...my apologies...
....as much as this blokey place is unfair sometimes, the girly place is not always better, but at the end of the day, its good to be made aware.

'Nutso' for me is a person torn to the edge from the worlds corruptions, I'm never brave enough to look over the edge, so I am a coward in comparison. PS can you please improve my poor grammar in your sig, or am I eternally a constructor of bad sentences?

[Number One]

I have been negative and cynical this week

Sorry to hear that - lifes a shit sandwich and every hours lunchtime sometimes eh?!




IYou close extremely disappointed... its always a battle for me to exorcise my mugglyness...my apologies...

My bad...that deep disappointment wasn't aimed at you it was more a reflection about how fed up I feel about the treatment that people like my son (and other kids and adults) suffer from the apparently oh so perfect 'normal' members of society.


PS can you please improve my poor grammar in your sig, or am I eternally a constructor of bad sentences?

lol - will sort that for ya - hadn't bothered noticing to be honest ;)

[Paul in NZ]

I have daughter and 2 grandsons living with us now... (messy, not relevant why but probably for some time)

Youngest (5) has, erm, issues and most likely mild spectrum Autistic or Aspergers. Because of budgets, moving, issues and incompetence he has yet to earn his label and the associated budget for the school (who have been fantastic)

If you can help us with a diagnosis - maybe we can help you? :innocent:

[Number One]

If you can help us with a diagnosis - maybe we can help you? :innocent:

Good to hear your school has been good - unfortunately I am beginning to wonder if official diagnosis is at all helpful (other than to family) it seems that school have used it as a tool to separate and ostrasize him and of course any naughtiness on his part is ALWAYS his and only his fault :rolleyes: of course the fact that little Tommy (whom Sully One had kicked hard) was actually following him around all day calling him an idiot and pushing him and spitting at him and getting other kids to be mean to him too...shit little Tommy (who by the way is one of the glorious normal lot) is lucky I didn't get my foot on him! Of course I handled it maturely and discussed how hurting others is never acceptable (biting my tongue from saying except for that little shit) and that there are other ways to handle things...equally as hideous...become a rat - yeah that'll make you popular....arrrgh

Anyway - many kids do seem to go 'undiagnosed'...in our case it wasn't until the behaviours started to 'make life difficult for the teachers' that we got any attention on it at all...sadly then it was only due to one wonderful woman who kept hammering the head teacher over it all to get things followed up properly with GSE...however getting what is required to help him while he is getting to grips with himself is a constant and mostly quite unsatisfying battle.

I know of others who paid to go private to get their 'labels' unfortunately their experiences seem to suggest that if you pay for it yourself you get even less support than those with public system diagnosis.

Best of luck to your grandson and kia kaha to your daughter...give her lots of support - it's tough and at times heartbreaking. Feel free to have her contact me - I am very happy to speak with anyone that is just starting this parenting journey.

[Paul in NZ]

Best of luck to your grandson and kia kaha to your daughter...give her lots of support - it's tough and at times heartbreaking. Feel free to have her contact me - I am very happy to speak with anyone that is just starting this parenting journey.

Its been a bit of a trip all ready as I'm sure you are aware... Not sure Vicki and I are up to this as we were expecting to be departing on our second childhood by now but seeing how the dead beat dad certainly isnt up to anything at all and has left daughter in all sorts of bother - well there is no one else .... If nothing else, theres a big ole bucket of love in the house...

Huge progress made all ready though. Amazing what a caring secure environment and love has achieved all ready...

[riffer]

I have to admit that all the help that people offered (which wasn't a hell of a lot as no-one had any name for what I had when I was growing up) was fuck all use at all. I got used to people thinking I was a bit weird. Kinda liked it and took ownership of it after a while. Learned to enjoy the solitary.

I find most people think too slow - life is a constant series of waiting for the rest of the world to catch up sometimes it seems - and people most often just mistake that for arrogance so I tend to alienate and piss people off. I'm lucky that my aspergers seems to come hand in hand with a very high IQ and unlucky that I have absolutely no social skills except those I've learned to fake along the way. Also I discovered that if you ignored the people that only pissed you off, tried to keep away from the ones that could hurt you and dealt to the ones that you knew you could win a fight against you could get through - but I don't recommend it. And occasionally I've met some really great people that I can be normal around. But they're pretty rare.

Sorry Sherie, other people do suck. And there is no acceptance if you're different. In the end you have to learn to deal with it or you will hurt other people or yourself. It's a shitty road to travel and I wish you and your young feller the very best but its really, really hard and sometimes it will get too much.

Just give him love and acceptance, and hope like hell he finds a way to come through to the other side. It's worth it. The teenage years are the worst. I got through thanks to music, motor vehicles and a lot of drugs. Now it's just the first two. The last one took a while to get over but I'm glad I did. Still, anything you survive's an experience isn't it? LOL... I think.

Does this help? Probably not... sorry if it doesn't.

[Number One]

Sorry Sherie, other people do suck.

I think that they can be influenced however...I guess I am holding out in hope and am prepared to advocate along the way for better treatment, awareness and understanding.

Thank you for sharing your story mate :hug: I am sure you are not alone on here (SkidMark aside) and I hope that others will stop and think about what has been written here before they jump to judgement and meanness.

[scissorhands]

I have to admit that all the help that people offered (which wasn't a hell of a lot as no-one had any name for what I had when I was growing up) was fuck all use at all. I got used to people thinking I was a bit weird. Kinda liked it and took ownership of it after a while. Learned to enjoy the solitary.

I find most people think too slow - life is a constant series of waiting for the rest of the world to catch up sometimes it seems - and people most often just mistake that for arrogance so I tend to alienate and piss people off. I'm lucky that my aspergers seems to come hand in hand with a very high IQ and unlucky that I have absolutely no social skills except those I've learned to fake along the way. Also I discovered that if you ignored the people that only pissed you off, tried to keep away from the ones that could hurt you and dealt to the ones that you knew you could win a fight against you could get through - but I don't recommend it. And occasionally I've met some really great people that I can be normal around. But they're pretty rare.

Sorry Sherie, other people do suck. And there is no acceptance if you're different. In the end you have to learn to deal with it or you will hurt other people or yourself. It's a shitty road to travel and I wish you and your young feller the very best but its really, really hard and sometimes it will get too much.

Just give him love and acceptance, and hope like hell he finds a way to come through to the other side. It's worth it. The teenage years are the worst. I got through thanks to music, motor vehicles and a lot of drugs. Now it's just the first two. The last one took a while to get over but I'm glad I did. Still, anything you survive's an experience isn't it? LOL... I think.

Does this help? Probably not... sorry if it doesn't.

I was bullied by my own family and parents for being clever. It infuriates others when they cant keep up. Then you react to their hostility....no one likes a smart arse I suppose.

Maybe I have a labelled condition too... up till now I always though I just brought out the worst in people because of my poor social skills

[Number One]

MANY people have poor social skills...doesn't mean you need diagnosing ;)

[scissorhands]

MANY people have poor social skills...doesn't mean you need diagnosing ;)

Thanks for that, iif I wanted to check, where would i go in Aucks? I have many symptoms of aspergers....

[Paul in NZ]

MANY people have poor social skills...doesn't mean you need diagnosing ;)

Exactly - I mean I think I'm frigging fantastic but - appartently its not an opinion commonly held? :innocent: Of course they are wrong but thats another story :shifty:

Dude - people are awfully judgemental but not all the people are all the time, stress less and follow your star, placing your happiness into the hands of others approval is not a good plan...

[yungatart]

I am of no help to you, #1, except to say that the young man I work with, who has autism, was, as a year 9 (Form 3) student, difficult, 'strange' and hard work. As a year 13, he is delightful, reasonably well integrated with his peers, accepted and just downright charming.
Patience, boundaries, reasonable expectations and encouragement work wonders!

[riffer]

I am of no help to you, #1, except to say that the young man I work with, who has autism, was, as a year 9 (Form 3) student, difficult, 'strange' and hard work. As a year 13, he is delightful, reasonably well integrated with his peers, accepted and just downright charming.
Patience, boundaries, reasonable expectations and encouragement work wonders!

Exactly Janet. Couldn't have put it better myself. That whole puberty stage is horrifically difficult.

[Paul in NZ]

Exactly Janet. Couldn't have put it better myself. That whole puberty stage is horrifically difficult.

Oh shit - now you tell me. I've got a funny feeling I've signed up for a bit of a suicide mission with these two as it is... Argh!

Oh well - its time I had a new hobby or three. Sadly, bikes might have to go to fund puberty and the extras required when you have additional needs, I never planned on doing that, the bikes were supposed to be my retirement interest.

[Number One]

Thanks for that, iif I wanted to check, where would i go in Aucks? I have many symptoms of aspergers....

Not sure to be honest and I guess the question is...why would you WANT the label now? Will it help you do you think? I think the only way you could go for a diagnosis now would be to pay for it privately...not sure the system gives a crap about adults getting retrospective diagnosis unless they make complete public nuisances of themselves.


placing your happiness into the hands of others approval is not a good plan...

Indeed it is not a good plan however if everywhere you turn you are facing judgement, intolerance and just plan nastiness how does that NOT affect your happiness overall - seems to sure as shit be bothering my little boy right now...despite what we tell him about how those that matter don't mind and those that mind don't matter.

It's funny to think that we can buld tolerance and acceptance towards black people and it is commonly accepted that we are not to mistreat them because they are black...SO how come society still seems to think it's ok to behave poorly towards people who think or act differently to the thin wedge of members that congregate and belong in 'the normal zone'