[email protected]

All...I am wondering what the benefits would be, if there are any, of
looking into a formal diagnosis. My son, who is 5.5 years old I am sure, or I WAS
sure that he has sensory issues, as in SPD. Now, however, for various reasons,
I'm thinking it's Asberger's. I'm wondering - with me attempting all RU with
him - is there a benefit to getting a diagnosis? Right now, the only one *I*
can think of is for his Papa. My DH comes from a place in which such things
like SPD, Depression and PMDD (all things we face in this home) are things
that one needs to manage and deal with and use will power and pull yourself up
by your bootstraps kinda stuff. Not that's he's not a loving Papa - he is -
but he's rather closed to a lot of this, though moving forward well over time.

So those of you with kids or with experience in these types oif things -
pros/cons re a formal diagnosis?

Thanks!

Karen



**************Wondering what's for Dinner Tonight? Get new twists on family
favorites at AOL Food.
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[Non-text portions of this message have been removed]

Melissa Gray

In our experiences, diagnoses are helpful when in a school setting.
However, outside of a school setting, they really are not necessary
unless dealing with family who would actually otherwise be accepting.
However, I know in our case it has been difficult because many family
members criticize our choice to unschool kids with "disabilities".

We have two with diagnoses, and three without. The psychologist we
see regularly has said, "If you ever needed them, you could come
right in. However, as unschoolers, what's the point?" lol

Now, if he does have aspergers, it could be helpful when he turns 18
to have a diagnosis because he could qualify for SSI as well as other
assistance. The cool thing about that is that you can't have an
evaluation that's more than two years old at that point, so you'd
have to get another one regardless of anything else you do in the
next, say, eleven years.
Melissa
Mom to Joshua, Breanna, Emily, Rachel, Samuel, Daniel and Avari
Wife to Zane

blog me at
http://startlinglives.blogspot.com/
http://startlinglives365.blogspot.com



On May 16, 2008, at 12:41 PM, Kidgie@... wrote:

> All...I am wondering what the benefits would be, if there are any, of
> looking into a formal diagnosis. My son, who is 5.5 years old I am
> sure, or I WAS
> sure that he has sensory issues, as in SPD. Now, however, for
> various reasons,
> I'm thinking it's Asberger's. I'm wondering - with me attempting
> all RU with
> him - is there a benefit to getting a diagnosis? Right now, the
> only one *I*
> can think of is for his Papa. My DH comes from a place in which
> such things
> like SPD, Depression and PMDD (all things we face in this home) are
> things
> that one needs to manage and deal with and use will power and pull
> yourself up
> by your bootstraps kinda stuff. Not that's he's not a loving Papa -
> he is -
> but he's rather closed to a lot of this, though moving forward well
> over time.
>
> So those of you with kids or with experience in these types oif
> things -
> pros/cons re a formal diagnosis?
>
> Thanks!
>
> Karen
>
> **************Wondering what's for Dinner Tonight? Get new twists
> on family
> favorites at AOL Food.
> (http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)
>
> [Non-text portions of this message have been removed]
>
>
>



[Non-text portions of this message have been removed]

swissarmy_wife

I have a son whom I'm absolutely positive would have been given a
multitude of diagnosis'. SPD being one of them. For a very long time
I wavered back and forth on having him evaluated. Usually, when I
was thinking about evaluations we were going through a particularly
rough patch, with me not knowing what in the world to do to "solve his
problem". What I realized was that I was ACTUALLY trying to solve MY
problem!

I personally think labels/diagnosis can be quite limiting sometimes.
A child can certainly feel a lot of negative stigma attached to their
given title.

I think it would be important to ask yourself:

WHO with the evaluation/diagnosis help? You? or your child?

What needs does your child have that you cannot meet without a "proper
diagnosis". My son has MANY needs. But through unschooling and
mindful parenting we've been able to uncover his specific needs. A
diagnosis can put a child into a category leaving out some needs and
adding to ones that aren't there.


And very importantly, remember this: many childhood diagnosis would
not exist if it weren't for school and the habit of comparing children
to each other.



>My DH comes from a place in which such things
> like SPD, Depression and PMDD (all things we face in this home) are
things
> that one needs to manage and deal with and use will power and pull
yourself up
> by your bootstraps kinda stuff. Not that's he's not a loving Papa -
he is -
> but he's rather closed to a lot of this, though moving forward well
over time.
>
> So those of you with kids or with experience in these types oif
things -
> pros/cons re a formal diagnosis?
>

Deb

It really depends - IF a diagnosis will provide access to something
that your child is needing (by their own needs, not what you want
them to do) that you absolutely can not get any other way, then it
MAY be worth it. One of the hard things, though, is using the
diagnosis ONLY for that and ignoring it the rest of the time. For
example, the difference between "He's autistic" and "He's Jimmy, he
has some challenges that put his behavior on the autism spectrum"
Notice the difference? One classifies Jimmy as a diagnosis, the other
sees Jimmy as himself and these are challenges we're working on
helping him navigate. Sometimes a diagnosis can be freeing but mostly
it tends to pigeonhole. Not on the same level really, but it was
helpful for me to read materials on spirited/explosive kids - I read
the material, absorbed the parts of it that made sense for us to
incorporate in understanding DS, then left the 'labels' off and just
kept the tools that were helpful(and in the process gleaned info that
applies to DH as well - he thought it was cool to find out about it,
and it also helped to understand that it wasn't that DS was willfully
pestering DH but rather it was their *similarities* that struck
sparks and made certain situations more difficult between the two of
them than it was with me and either of them).

--Deb

Jamie Minnis

I think that, as others have mentioned, a diagnosis is most "helpful" for a school setting, but if your spouse is having a hard time understanding or dealing with your son's behaviors, it might help.  It made a big difference for my husband to see that our sons' behaviors and meltdowns were not because of my parenting (I am a stay-at-home mom and he works a lot to keep it that way) and a lack of discipline, but a "real" issue that is somewhat out of your control.  I do agree, however, that a diagnosis can be frustrating and can sometimes cause parents to unconsciously limit what they think the child can do.  But that is something that you will have to figure out for yourself -- remember to trust yourself and your instincts about what is right for your child and your family.  Good juck.
Jamie



----- Original Message ----
From: Melissa Gray <autismhelp@...>
To: [email protected]
Sent: Friday, May 16, 2008 1:42:01 PM
Subject: Re: [unschoolingbasics] A question about diagnosing differences


In our experiences, diagnoses are helpful when in a school setting.
However, outside of a school setting, they really are not necessary
unless dealing with family who would actually otherwise be accepting.
However, I know in our case it has been difficult because many family
members criticize our choice to unschool kids with "disabilities" .

We have two with diagnoses, and three without. The psychologist we
see regularly has said, "If you ever needed them, you could come
right in. However, as unschoolers, what's the point?" lol

Now, if he does have aspergers, it could be helpful when he turns 18
to have a diagnosis because he could qualify for SSI as well as other
assistance. The cool thing about that is that you can't have an
evaluation that's more than two years old at that point, so you'd
have to get another one regardless of anything else you do in the
next, say, eleven years.
Melissa
Mom to Joshua, Breanna, Emily, Rachel, Samuel, Daniel and Avari
Wife to Zane

blog me at
http://startlingliv es.blogspot. com/
http://startlingliv es365.blogspot. com

On May 16, 2008, at 12:41 PM, Kidgie@... wrote:

> All...I am wondering what the benefits would be, if there are any, of
> looking into a formal diagnosis. My son, who is 5.5 years old I am
> sure, or I WAS
> sure that he has sensory issues, as in SPD. Now, however, for
> various reasons,
> I'm thinking it's Asberger's. I'm wondering - with me attempting
> all RU with
> him - is there a benefit to getting a diagnosis? Right now, the
> only one *I*
> can think of is for his Papa. My DH comes from a place in which
> such things
> like SPD, Depression and PMDD (all things we face in this home) are
> things
> that one needs to manage and deal with and use will power and pull
> yourself up
> by your bootstraps kinda stuff. Not that's he's not a loving Papa -
> he is -
> but he's rather closed to a lot of this, though moving forward well
> over time.
>
> So those of you with kids or with experience in these types oif
> things -
> pros/cons re a formal diagnosis?
>
> Thanks!
>
> Karen
>
> ************ **Wondering what's for Dinner Tonight? Get new twists
> on family
> favorites at AOL Food.
> (http://food. aol.com/dinner- tonight?NCID= aolfod0003000000 0001)
>
> [Non-text portions of this message have been removed]
>
>
>

[Non-text portions of this message have been removed]






[Non-text portions of this message have been removed]

The Patersons

I'm a pro-diagnosis girl.



Read here for my thoughts about it.
http://rainybutclearing.blogspot.com/2007/04/labels.html



My child was SOOOOO difficult that I thought it was something the matter
with me.



It was great to be able to say, "Ok, he has trouble with this because his
brain is functioning in a different way. Now I can understand him more. And
now I can work on finding a way through it." My child has autistic spectrum
disorder, and the best thing I've found is called Relationship Development
Intervention (RDI). It works in pretty well with unschooling. Lots of
parental involvement! It's changed my life and led me to unschooling.



Good luck.
Cecily





[Non-text portions of this message have been removed]

Ren Allen

--- In [email protected], "The Patersons"
<tuipiri@...> wrote:
>
> I'm a pro-diagnosis girl.



Rather than thinking about it in terms of "pro" or "anti", I like to
think about it in terms of "what is most helpful". That will vary from
family to family and child to child. A diagnoses would not help my
child in any way, shape or form. I've done all the research and know
in my heart exactly what they'd want to slap on him. I know what
supports my child and I know what isn't helpful. I've had a
psychologist concur with my own gut feelings about it, after doing an
intake for Neural feedback.

Anyhoo, the point is that in an unschooling setting there may be a
time and place for diagnoses. It certainly isn't necessary though. I
do think that reading and learning about "difference" (I don't see
them as a "disability" that's where we especially have a difference of
opinion) might help some parents like it helped me. I wanted to
understand. Beyond that, I support him for where he is right now, and
a diagnoses won't help me do that.

I found this part a bit perplexing at your blog: "and the fact that
he thinks about things a little bit differently, so we're helping him
to learn to think better."

The support I give my child doesn't help him "think better" (what is
"better" anyway? Maybe he thinks just fine for HIM) it does help him
COPE better to have the support and nurture he needs. But we're not
trying to change the way he thinks. Only time will do that. Time and
nurture and meeting his needs will enable him to gather tools to cope
with this world in his own way, thinking about it in only the way that
he can.

Ren
learninginfreedom.com

[email protected]

-----Original Message-----
From: The Patersons <tuipiri@...>

My child was SOOOOO difficult that I thought it was something the matter
with me.

It was great to be able to say, "Ok, he has trouble with this because
his
brain is functioning in a different way. Now I can understand him more.
And
now I can work on finding a way through it."

-=-=-=-=-

I understand where you're coming from; and if that's what it *takes*,
then fine. But did you need a diagnosis for that? Wasn't it obvious
that he thought differently?

Is that not true of every single person on the planet? No two people's
brains function in the same way. I think a lot of parents assume their
kids will "think" like them/act like them/BE like them. But they aren't
little "us's"---they are completely and amazingly NOT "us's". (that's
hard to figure out: us's? uses? usses? <g> grammatically, it would be
we's or wees <g> Making up plural words here. <BWG>)

If we look at our children as different, from the beginning...and
forever, we can understand them *all* better and work on finding a way
through with a better attitude.

I mean: it's *not* just aspie/autistic kids that should get this gift!
All children have brains that function in different ways, and certainly
not all need diagnoses!

It still boils down to it's being about *you* and not the kid. If we
can accept him How He Is, we don't need to label *ourselves* as "mother
of an aspie"---we can just be mother of a great kid.

My biggest issue with the aspie/autistic stuff is how much is being
tried to FIX these kids. They are not broken. They just Are Who They
Are. We can choose to work WITH them or we can choose to try to FIX
them. Working WITH them will have such sweeter benefits!


~Kelly

Kelly Lovejoy
Conference Coordinator
Live and Learn Unschooling Conference
http://www.LiveandLearnConference.org

keetry

--- In [email protected], kbcdlovejo@... wrote:
>
> I understand where you're coming from; and if that's what it
*takes*,
> then fine. But did you need a diagnosis for that? Wasn't it
obvious
> that he thought differently?
>
> Is that not true of every single person on the planet? No two
people's
> brains function in the same way.
>
> If we look at our children as different, from the beginning...and
> forever, we can understand them *all* better and work on finding a
way
> through with a better attitude.
>
> I mean: it's *not* just aspie/autistic kids that should get this
gift!
> All children have brains that function in different ways, and
certainly
> not all need diagnoses!
>
> It still boils down to it's being about *you* and not the kid. If
we
> can accept him How He Is, we don't need to label *ourselves*
as "mother
> of an aspie"---we can just be mother of a great kid.

================

I agree with all of this. I have one child who was diagnosed with
ADHD while he was in school. Having that diagnosis did not help him
in any way be more successful in school or out. All it did was give
people even more fuel for pressuring me to medicate him.

When my middle child was 3 the pediatrician suggested he had SID/SPD
and referred us to OT. I declined. I didn't need a diagnosis to know
how my child was or how to respond to him. There's nothing that he
does that interferes with his life so much that he needs
intervention. If it ever becomes a problem for him and he decides he
needs extra help, then we can look into getting a diagnosis and that
extra help. For now, though, he's fine with it all so I'm fine with
it all.

Alysia

[email protected]

In a message dated 5/16/2008 11:42:32 A.M. Pacific Daylight Time,
autismhelp@... writes:

However, outside of a school setting, they really are not necessary
unless dealing with family who would actually otherwise be accepting.


Melissa, thanks. That is right where I'm at with it. It seems the only
benefit would be for his Papa - wether SPD or Asberger's. thanks so much for your
comments. I look forward to reading the others I see in my box :)

Karen



**************Wondering what's for Dinner Tonight? Get new twists on family
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[Non-text portions of this message have been removed]

[email protected]

In a message dated 5/16/2008 1:42:58 P.M. Pacific Daylight Time,
debra.rossing@... writes:

Not on the same level really, but it was
helpful for me to read materials on spirited/explosive kids - I read
the material, absorbed the parts of it that made sense for us to
incorporate in understanding DS, then left the 'labels' off and just
kept the tools that were helpful(and in the process gleaned info that
applies to DH as well - he thought it was cool to find out about it,
and it also helped to understand that it wasn't that DS was willfully
pestering DH but rather it was their *similarities* that struck
sparks and made certain situations more difficult between the two of
them than it was with me and either of them).

--Deb


Deb, I bolded and enlarged that part that makes me want to do this. The
other parts, I totally agree. I don't want to pigeonhole him in the LEAST. I'd
like to think that I could use a diagnosis as a tool - def. NOT who Julian is,
but rather a part of him that helps me learn about his creative behaviors :) I
love all of him - maybe it would help with some of the more challenging
behaviors - to understand them more, kwim? And that may help me to be more
patient and creative too, as far as the RU and CL lifestyle goes...

Db, thanks for your input and thoughts. It's helping me a lot to listen to
others.

Karen



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[Non-text portions of this message have been removed]

[email protected]

In a message dated 5/16/2008 6:17:30 P.M. Pacific Daylight Time,
jamieminnis@... writes:

It made a big difference for my husband to see that our sons' behaviors and
meltdowns were not because of my parenting (I am a stay-at-home mom and he
works a lot to keep it that way) and a lack of discipline, but a "real" issue
that is somewhat out of your control. I do agree, however, that a diagnosis
can be frustrating and can sometimes cause parents to unconsciously limit what
they think the child can do.


Hi, Jamie. Thank you, too! I see I keep copying and marking the same ideas
in the responses I've been getting - interesting. Def. all about DH, but I know
for me too (I just replied about that in a different note), it could help me
- give me more tools for my tool box. In some ways, I actually see his
abilities increasing and getting rid of limitations. Freeing - but maybe I'm in a
fantasy land, lol!

Jamie, thanks for your input. I appreciate all of this a lot.

Karen



**************Wondering what's for Dinner Tonight? Get new twists on family
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[Non-text portions of this message have been removed]

[email protected]

In a message dated 5/17/2008 5:40:15 A.M. Pacific Daylight Time,
tuipiri@... writes:

http://rainybutclearing.blogspot.com/2007/04/labels.html



My child was SOOOOO difficult that I thought it was something the matter
with me.



It was great to be able to say, "Ok, he has trouble with this because his
brain is functioning in a different way. Now I can understand him more. And
now I can work on finding a way through it."


Cecily, thanks for the link! I'm a link-freak, lol, so that's a great help
to me. And you said it - so I can help him.

wow...this is great you all.

Karen



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[Non-text portions of this message have been removed]

[email protected]

In a message dated 5/17/2008 5:51:20 A.M. Pacific Daylight Time,
starsuncloud@... writes:

Rather than thinking about it in terms of "pro" or "anti", I like to
think about it in terms of "what is most helpful". That will vary from
family to family and child to child. A diagnoses would not help my
child in any way, shape or form. I've done all the research and know
in my heart exactly what they'd want to slap on him. I know what
supports my child and I know what isn't helpful. I've had a
psychologist concur with my own gut feelings about it, after doing an
intake for Neural feedback.



Ren, thank you! We have a GREAT doctor that has said he backs my parenting
"110%" :) He has supported unschooling, extended breastfeeding and no vaccines,
so I don't worry about what he would say - but the diagnosticians, I do have
concerns about. Thanks for aspect. I clearly need to ruminate on this and
discuss it with not only Julian himself, but also with his Papa.

Karen



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[Non-text portions of this message have been removed]

[email protected]

In a message dated 5/17/2008 5:57:51 A.M. Pacific Daylight Time,
kbcdlovejo@... writes:

My biggest issue with the aspie/autistic stuff is how much is being
tried to FIX these kids. They are not broken. They just Are Who They
Are. We can choose to work WITH them or we can choose to try to FIX
them. Working WITH them will have such sweeter benefits!





I soooooooo agree! I don't see Julian as being broken or damaged in the
LEAST. I just wonder if more tools will help me be more supportive of him and his
lovely uniqueness. He doesn't need fixing. His Papa, and I (and his older
siblings!) need to understand him better.

So much to think about. In the mean time, I have been trying to really see
him again - I feel like I lost out a bit on that recently. It's been a rough
few weeks especially here, but it feels lighter today and yesterday (severe
PMDD and family stress) and I am feeling like I can really BE here with him and
learn with him again. It's good to know too, that I can bounce this off of
you all, and get some interesting insight and ideas. I really thank all of you
for this.

Karen



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[Non-text portions of this message have been removed]

Jodi Bezzola

Hey Karen, just a quick request that you mark the person you're quoting somehow to separate it from your response for those of us trying to follow the discussion...I don't want to miss anything, and I'm having trouble keeping who said what straight. thanks :)
Jodi

Kidgie@... wrote:

In a message dated 5/17/2008 5:57:51 A.M. Pacific Daylight Time,
kbcdlovejo@... writes:

My biggest issue with the aspie/autistic stuff is how much is being
tried to FIX these kids. They are not broken. They just Are Who They
Are. We can choose to work WITH them or we can choose to try to FIX
them. Working WITH them will have such sweeter benefits!

I soooooooo agree! I don't see Julian as being broken or damaged in the
LEAST. I just wonder if more tools will help me be more supportive of him and his
lovely uniqueness. He doesn't need fixing. His Papa, and I (and his older
siblings!) need to understand him better.

So much to think about. In the mean time, I have been trying to really see
him again - I feel like I lost out a bit on that recently. It's been a rough
few weeks especially here, but it feels lighter today and yesterday (severe
PMDD and family stress) and I am feeling like I can really BE here with him and
learn with him again. It's good to know too, that I can bounce this off of
you all, and get some interesting insight and ideas. I really thank all of you
for this.

Karen

**************Wondering what's for Dinner Tonight? Get new twists on family
favorites at AOL Food.
(http://food.aol.com/dinner-tonight?NCID=aolfod00030000000001)

[Non-text portions of this message have been removed]







[Non-text portions of this message have been removed]

[email protected]

In a message dated 5/17/2008 1:55:18 P.M. Pacific Daylight Time,
jodibezzola@... writes:

Hey Karen, just a quick request that you mark the person you're quoting
somehow to separate it from your response for those of us trying to follow the
discussion...I don't want to miss anything, and I'm having trouble keeping who
said what straight. thanks :)
Jodi


______________

did'nt i do that? oops! it shows up as if i have on aol..I'm sorry!!!

Karen




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[Non-text portions of this message have been removed]

The Patersons

"I understand where you're coming from; and if that's what it *takes*,
then fine. But did you need a diagnosis for that? Wasn't it obvious
that he thought differently?"



Yes, it was incredibly obvious! That's not what I needed the diagnosis for.
I needed it because I didn't understand just how his thinking was different.
Having the words 'autistic spectrum disorder' gave me a handle to go and do
some research and find out exactly what the characteristics of ASD. For
example: he screamed a whole lot for a year or more. So I needed to know
what was behind that. Is it a characteristic of ASD that he needs to do
something with his voice, or is it that he not handling the uncertainty and
thus is expressing his anxiety? (FYI it's the anxiety).


Is that not true of every single person on the planet? No two people's
brains function in the same way. I think a lot of parents assume their
kids will "think" like them/act like them/BE like them. But they aren't
little "us's"---they are completely and amazingly NOT "us's". (that's
hard to figure out: us's? uses? usses? <g> grammatically, it would be
we's or wees <g> Making up plural words here. <BWG>)

If we look at our children as different, from the beginning...and
forever, we can understand them *all* better and work on finding a way
through with a better attitude.

I mean: it's *not* just aspie/autistic kids that should get this gift!
All children have brains that function in different ways, and certainly
not all need diagnoses!

Absolutely. No one is the same. You just have to do one of those personality
tests to see that you can quantify the obvious - In the Myers Briggs scheme
I'm an INFJ - my husband is ENFP. It's helpful to us to be able to
understand each other better so that we don't fall into the easy pit of
thinking his messiness is laziness, or my organisational skills are
arrogance. My daughter is very different from me. She needs heaps more
friends around than I do. She hates dancing, whereas I would have given my
right arm to do ballet lessons (although on second thought that wouldn't
have done my ballet skills much good...)

However, with all our differences though, there are basic similarities in
human child development. Eg. We expect every child to walk (eventually),
unless they are missing their feet or have some muscular difficulty etc. We
expect every child to use the toilet eventually - whether you start with EC
or nappies - unless they have some bladder issue etc. The things that are
missing from the development in autistic children are the things we don't
even think about like - responding to and being able to use: facial signals,
tone of voice, gestures, following gaze to find something, following a
point. Most of the non-verbal relationship skills that babies under 18
months develop automatically, autistic kids lack. Why do they lack them?
Because for whatever reason, their brains are not connecting in normal ways.



My biggest issue with the aspie/autistic stuff is how much is being
tried to FIX these kids. They are not broken. They just Are Who They
Are. We can choose to work WITH them or we can choose to try to FIX
them. Working WITH them will have such sweeter benefits!

There are a few things to say. Firstly, numbers of ASD children has
increased greatly in the last 20 years, such that they now say that 1 in 160
children is 'on the spectrum'. Of course, levels of intensity vary greatly.
So someone has to ask the question: why is this? And how can we stop the
increase?

Secondly, if you want to use the word 'broken', I think they are broken - in
the same way that if your kid had a problem walking at the age of 10, you
could consider something 'broken'. 'Broken' only refers to not being the
same as the majority - the same as what we would consider normal/usual. I'm
not saying there's anything bad or wrong with being broken. Just that
whatever it is is not working as well as one would expect, given the regular
state of the world. And if you can do something about it, why wouldn't you?
Why do we do surgery on club feet and hare lips? Why do we find ways to
balance body chemistry of children with diabetes? Because 'fixing' these
things helps the children who have them work in the way most others work and
relate to others better.

Autism looks a little bit different because you can't see a physical
difference, and it's not life-threatening in general. But I would argue that
relationships are the key to a happy and fulfilled and joyful life. And if
someone is lacking those basic relationship skills because their brain has
not had the opportunity to get 'wired' in that way, why wouldn't you want to
do something about it if you could?

The limited research that has been done on autistic (mostly Aspergers)
adults (three major studies) shows that only about 10-20% are able to hold
down a regular job. Less than 10% have a friend or intimate relationship.
Less than 6% live independently. Over 80% suffer depression and other mental
health issues. It's not a great scenario for an autistic kid. But if you can
do something to help that kid live a happy and joyful and relationship
filled life, why wouldn't you?

Thirdly, frankly, my child did need 'fixing'. There are different ways ASD
affects people, but when my child was diagnosed at 3, he had screamed all
day every day for months. He couldn't go in or out of a doorway without
screaming. Noone could look at him without him screaming. He couldn't
understand a simple concept like "we'll have that later". He couldn't answer
a question or make a simple choice without screaming. He didn't have one
child he liked or played with. He could speak, but he would only recite
scripts from TV shows. He talked about Thomas the Tank Engine all day (when
he wasn't screaming). He was visibly anxious and unhappy. He needed help -
more help than I knew how to give.

One simple thing was changing his diet to exclude gluten and casein. Within
three weeks he was happier, brighter, more connected. It made a big
difference. Starting RDI therapy made another big difference. He still has a
long way to go to building his relationship skills, but he's well on the way
and he's absolutely gorgeous and adorable. I love him to bits.

Another thing: I'm pretty sure my older brother (now 37) has autism. He's
unable to think flexibly and gets confused in conversations. He is mildly
affected and is one of the 10% who does ok as an adult, but he's never had a
girlfriend and I know he'd love to be married. He's only ever had one friend
with whom it was a real relationship of peers - every other relationship
I've observed him in has had the other person doing all the work and 'being
nice' to him as opposed to relating to him on the same level. I think that's
sad. I would have loved him to get the therapy my son has. It would have
made his life a lot happier and more joyful.


It still boils down to it's being about *you* and not the kid. If we
can accept him How He Is, we don't need to label *ourselves* as "mother
of an aspie"---we can just be mother of a great kid.

This is something I have had a lot of trouble with, and a lot of grief
about. I've had a lot of soul-searching to do about my ideas of 'perfect'
and 'acceptable'. It has been a journey for me and I'm extremely grateful
for it. No matter how my boy comes out in the end, I will love him and
accept him just as I do now. But that doesn't stop me wanting to get him the
most effective help I can.



Thanks for your thoughts.

Cecily



_._,___



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keetry

--- In [email protected], "The Patersons"
<tuipiri@...> wrote:
>
> Secondly, if you want to use the word 'broken', I think they are
broken - in
> the same way that if your kid had a problem walking at the age of
10, you
> could consider something 'broken'. 'Broken' only refers to not
being the
> same as the majority - the same as what we would consider
normal/usual.

=============

I would call that different, not broken. Once you call it broken
that does mean you see it as a problem that has to be fixed.

=============

And if you can do something about it, why wouldn't you?

===========

Because the child may not want anything done about it. The person
may not think there's anything "wrong" with them until other people
start pointing it out or reacting to it.

===========

> Why do we do surgery on club feet and hare lips? Why do we find
ways to
> balance body chemistry of children with diabetes?

=============

I don't know about club feet but a hare lip might need to be
repaired so that a person can eat. If a person can't eat, s/he will
die. That's about survival, not getting along better with others or
fitting into society better.

===========

I would argue that
> relationships are the key to a happy and fulfilled and joyful
life.

=========

Not everyone would agree with you.

=============

And if
> someone is lacking those basic relationship skills because their
brain has
> not had the opportunity to get 'wired' in that way, why wouldn't
you want to
> do something about it if you could?

===========

Because it should be up to the person with the "problem" to decide
there is a problem that needs to be fixed. It's not up to someone
else to decide that for the person.

Alysia

Jodi Bezzola

~~Secondly, if you want to use the word 'broken', I think they are broken - in
the same way that if your kid had a problem walking at the age of 10, you
could consider something 'broken'. 'Broken' only refers to not being the
same as the majority - the same as what we would consider normal/usual.~~

This reminds me of the recent thread about 'rules' and 'principles' and some were using the word 'rules' as gentle guidelines and some as RULES. I think it's funny that sometimes we get stuck on what a word means to us in our own lives and kind of forget that that word means something different to most people and has for a long time. 'Broken' is one of those words I think. I bet if there was to be poll conducted, most people when hearing the word broken, would likely picture cracked, in pieces, unsalvageable, something that needs throwing away, etc. So when the general use of the word is to describe something in this state, I'm not sure it's the best adjective to describe a child. I actually wouldn't consider my child 'broken' even if they couldn't walk at the age of 10. I would surely consider it 'different' though. The only reason it would even be considered 'different' is because most kids walk around 1. Who says it wouldn't be just perfect for that child to
walk at 10???

Jodi



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