Survival Rules

[Guest guest]

Very nice, Judy. I will think about this some more and see what other

ideas I can come up with.

Best,

~CJ

JUDY BARROW wrote:

>

>

> My first draft of 'rules to live by' for Aspergers, would be to

>

> 1. Be prepared to explain.

> If the situation suits, explain what Aspergers is: don't assume others

> will accept your behaviours or know the facts about AS.

>

> 2. Never fear.

> If you are unsure, or you have sensory issues, are frustrated because

> you feel you are right, are feeling lost - sit down with a close friend

> or family member and talk it through. Don't hide away or puzzle at it.

> Seek understanding. Someone will listen.

>

> 3. Work out your routines.

> What feels safe, what do you hate, what do you aim towards? Set out your

> ambitions and do something about them, in a way that is feasible. Lists,

> programmes, and support from others will facilitate this. Above all, a

> timetable of your plans. This let's others know, too.

>

> 4. Accept that meltdowns can happen. (and on a lesser scale, fallouts

> with others)

> If they happen to you, prepare yourself and others and have a system.

> Set out a place to go if at home; and what to do if you

> meltdown outside; and afterwards, have a look at the usual triggers; try

> to avoid these when you can.

>

> 5. Know your traits.

> Sensory? ( light, smell, touch, noise). Boredom? ( needing stimmies).

> Lacking in social perception? Match these with avoidance, planned

> activities, and work on the creative, intelligent stratas of your AS to

> show what a superb person you are. Don't be appalled if others dont to

> fall down laughing at your jokes, or be perplexed if they are not

> instantly in thrall to you, don't try too hard. And try not to despise

> others. There is a place for everyone, it's quality that counts.

>

> 6. Accept that NT's cannot be like you.

> NT's can be able to compliment your own traits, and support you to live

> your life your way, fill in the social gaps, explain how they see the

> world in a different way.

>

> Well that's my starter pack. Now, everyone, time for you to amend,

> append, and do your rules to live by- no hard and fast rules, but a set

> of helpful tools, really. I now bow to you all.

>

> Compiled with no help from Ian, whose reaction was ' you NT's should

> just let us take over' ( Tongue in cheek...). When he read them he was

> in agreement, though, and accused me of being a mind reader. A reader

> of AS minds - now wouldn't that be something. Xx

>

> Judy B, Scotland

[Guest guest]

What an awesome list Judy!

The first addition that comes to mind is " reach out, don't be afraid to ask for

help " .. or wording that effect

Sometimes it escapes us Aspies that if we can't solve a problem, and/or we are

overwhelmed, others would help, if only we asked them! When it eventually dawns

on us that we can't handle this alone, we are stuck again because some of us

don't know how to properly for help. I feel embarrassed when I am overwhelmed or

don't have the solution. I don't want to bother people for something that I

" should " know, or " should " be doing myself.

Can members fill in the " how to " on this one? LOL!

- Helen

>

>

>

> Subject: PLEASE READ

> To: aspires-relationships

> Date: Friday, 9 September, 2011, 16:17

>

>

>  

>

>

>

> Hi all,

> Attacks on members without public apology results in moderation, and since

subsequent offlist correspondence indicated no apology was forthcoming, the

member was removed. Removal is an extreme last resort, and is a rare and

regrettable occurrence on ASPIRES.

>

> The thread about survival rules for those of us on the spectrum had potential

for an interesting discussion, but quickly took a wrong turn, ironically

demonstrating that " communication " tops the list of skills that will make or

break an Aspie, or an NT for that matter!

>

> Again, we are sorry for the attack made towards CJ, and thank all those who

rose to her defense.

> - Helen

> Moderator of ASPIRES

> for , Listowner of ASPIRES

>

[Guest guest]

Hi Judy,

The conversation between you and Eyre - pure gold! Thanks.

However, I couldn't find your attachment " Survival Rules " - perhaps because I

have a Mac.

Bob

>

> Here you go all,

>

> I've put this together, as promised. It's based on posts, and answers, that

have been given by myself and others over past years'.

>

> Very much open to comments, and suggestions for its use.

>

> Judy B, Happy New Year, Scotland.

>

[Guest guest]

Oh Dear! How are you, London Bobby? Are you still in Spain - will ensure to get a chat with you soon .

I will save the document in a different format and see if that works - I have a Mac and PC so can have a fiddle with the text on my Mac and see what happens...

Best to you as always, Judy B

Subject: Re: Survival RulesTo: aspires-relationships Date: Friday, 6 January, 2012, 10:52

Hi Judy,The conversation between you and Eyre - pure gold! Thanks.However, I couldn't find your attachment "Survival Rules" - perhaps because I have a Mac.Bob >> Here you go all,> > I've put this together, as promised. It's based on posts, and answers, that have been given by myself and others over past years'.> > Very much open to comments, and suggestions for its use.> > Judy B, Happy New Year, Scotland.>

[Guest guest]

Hi Bob

I've changed it to a PDF which seems to work on my Mac. I would have pdf'ed it in the first place, but wanted to send it in a changeable format in case anyone wanted to append/amend.

Hope this works, so that you can read it.

Cheers me old mucker

Judy B

Subject: Re: Survival RulesTo: aspires-relationships Date: Friday, 6 January, 2012, 10:52

Hi Judy,The conversation between you and Eyre - pure gold! Thanks.However, I couldn't find your attachment "Survival Rules" - perhaps because I have a Mac.Bob >> Here you go all,> > I've put this together, as promised. It's based on posts, and answers, that have been given by myself and others over past years'.> > Very much open to comments, and suggestions for its use.> > Judy B, Happy New Year, Scotland.>

[Guest guest]

Hi Judy,

You can upload the file to our files section. In the Yahoo Groups help section,

type " how to upload a file " into the search box and that will explain how. This

is certainly a " keeper " in this group!

- Helen

--- JUDY BARROW wrote:

<snip>

> I will save the document in a different format and see if that works - I have

a Mac and PC so can have a fiddle with the text on my Mac and see what

happens...

[Guest guest]

Thanks Helen!

Didnt know I could do that, and thanks for letting me know, and for letting me upload the document on the illustrious Aspires site.

Thanks too, for all your help

Judy B <snip>> I will save the document in a different format and see if that works - I have a Mac and PC so can have a fiddle with the text on my Mac and see what happens...

[Guest guest]



Hi Judy:

Thanks for downloading it in word doc & .pdf format. Wow! You spent a lot of time and energy on this! I know this was a group effort bases on discussions back in December. When others have had time to read and digest it and you are happy with the final product and that can be just as you have it now, I would love to publish it on our website with permission from those that contributed or however you want the credit or intro to read.

As would say, "Nicely done!"

I was at the book store yesterday and drawn towards Temple Grandin's book, "The Way I see It, Revised & Expanded 2nd Edition. - A Personal Look at Autism & Asperger's." For those looking for a good book on AS/Autism, I recommend this one as well as other's. It is a very easy read and covers childhood to adulthood. Temple has a very unique way of looking at life.

She is also a product of her environment of which I can relate to as I was raised in the same era with the same social norms with a mother was who very strong on social rules and etiquette. Plus like Temple's mom, my mother was a champion on consequences if those rules were broken and very consistent with punishment for broken rules. It was an era of authoritarian parenting as oppose to this era of permissive parenting. lol Neither style is considered good parenting these days. Some believe it is the combination of the two....

Temple is very big on consequences. She has a chapter in her book titled: "Disability versus Just Bad Behaviors". She has a chart of what "she" considers inappropriate behaviors vs. behaviors that are triggered by sensory issues and may or may not need accommodations. I notice she lists: "Manipulating adults by throwing fits at home, school or in the community," under the heading of unexcused behavior. But I guess it might depend on what triggered the fit? She is very BIG on consequences for bad behavior, but that is just her perspective from one person "with" AS/autism.

She also offers a lot on pearls of wisdom for families and those "with" AS/autism.

Just me.

[Guest guest]

> Temple is very big on consequences. She has a chapter in her book titled:

" Disability versus Just Bad Behaviors " . She has a chart of what " she " considers

inappropriate behaviors vs. behaviors that are triggered by sensory issues and

may or may not need accommodations. I notice she lists: " Manipulating adults

by throwing fits at home, school or in the community, " under the heading of

unexcused behavior. But I guess it might depend on what triggered the fit?

I agree with Temple.

An explanation is not an excuse.

Throwing fits is *never* an acceptable response to anything, even though there

may well be a very good reason. Our job as parents is to teach our kids more

acceptable ways of freaking out when necessary.

… which may include abruptly walking out or other socially " bad " actions which

are less unacceptable than screaming violence. Even running out of a room

screaming " I can't take it any more " is better.

My ex saw nothing wrong with having anger meltdowns in front of his kids or me,

especially is we didn't trigger the meltdown. He expected us to have no reaction

when he'd swear at his computer and bang on the dining table for 10 minutes

straight. When I told him how his behavior affected us, he's reply " Stop

stomping on my feelings. I can bloody well say anything I f-ing want. " As an

adult, I found it hard to manage this … I think my kids will carry the scars

from their father's meltdowns for life.

--Liz

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[Guest guest]

my comments = **, K.

>

> > Good advice....but everything seems to be for the young. Particularly

> > the young who have someone to understand and teach them. What about us

> > adults who never had those advantages - do we just give up?

>

> No, no, don't give up, but I absolutely agree with you. It's all for

> kids and we Aspie adults are left out in the cold.

** That's why I created Greater Chattanooga Aspies, when I knew there was

*nothing* around here for adults. Besides, one of my advisory board members and

I conducted a simple survey of national autistic organizations in the United

States. We discovered over 90% of these organizations have a picture of

children on their website, and none of adults (except one where both a child and

adult was shown at the same time).

Yes, don't ever give up. If there is a huge need in your community and it needs

to be filled, consider filling it yourself (like what I did). I bumbled and

stumbled around, trying to figure out what to do. Once I was able to get things

figured out and such, it got easier for me.

> Yep, totally agree, and the smaller the city you're in, the less

> chance you have of finding any adult support. If you moved to a big

> dirty noisy city, there'd be a better chance of finding adult support,

> but that comes with all those extra sensory aggravations, so would it

> be worth it?

** My city is one of the more environmentally friendly cities in the southeast

United States, once better known as the worst city in the United States to live

in the late 1970's (Chattanooga, Tennessee). It was so bad, that Chattanooga

made Pittsburgh, Pennsylvania look like an angel of a city during Pitt's steel

manufacturing heyday during the same time (and Pittsburgh was not an ideal city

to live either at that time).

While 30-35 years have gone by and the pollution which once sooted Chattanooga

is long gone (I moved to Chattanooga in mid-2007), there was not anything in the

way of services for adults with Asperger's until I got my organization going.

So while it might be true that the smaller the city the less available services,

that should not keep anyone from starting a support organization for adults with

AS. Sometimes, us Aspies need to extend our comfort zone outwards to try things

that we might not have otherwise considered. If we don't try, we will never

know what could be. But if we try, then we can say we tried.

>

> > I still have to deal with crowds and noise and sunlight - and the fact

> > that most of the people around Just Don't Get It. I hate sounding like

> > I'm making excuses, especially when added to all the things I won't help

> > with or volunteer for because of dyspraxia and executive dysfunction. I

> > don't LOOK disabled.

** Dealing with noises, crowds, etc. are just a part of life. The only excuses

in life we make are the ones we limit ourselves. That is why it took quite some

time until I realized that AS or HFA are nothing more than labels and " alphabet

soup. " When I chose to make excuses for why I live with AS and HFA, I limited

myself from what I was capable of achieving. I wanted to say to people

mentally, " Woe is me... look at me.. I have AS/HFA.. this is only what I can

do. " But really, is that all I can do? Is that all we can do?

Sure, society wants to condemn people who are " different " than they are, because

they have AS or HFA or anything else. It wants to condemn people because they

are not young and virile. It wants to condemn people because of whatever

reason. However, we can make a difference, if that is what we choose to do.

Society may look at me and so many others in here and elsewhere and think, " We

don't need you, even though you have all this untapped knowledge and energy that

can make a difference in the world. "

Guess what, society? When I said to myself between 2007-2009, " The best years

were in front of me, " I was not kidding. Society is only beginning to hear from

me. When I have come full force, it will be in such a way society has never

felt before.. and that's a promise and I stick by it.

> Correct. Why follow other people's rules anyway? Better to make your

> own rules and then work on making the necessary changes to your social

> and your physical environment such that keeping those rules just comes

> naturally to you.

** The status quo of society is to confine people's thinking to 'inside the box'

instead of what possibilities might exist. The status quo says, " There is only

one rule, one process to A, B, C, X, Y, and Z. How can you possibly think there

is more than one rule, more than one process for the same thing? " When we

limit ourselves by status quo thinking, we limit ourselves to other potential

processes of arriving at the same solution. Thus, by reflecting and seeing what

works for us, as people who are on the Spectrum, we can arrive to other ways for

a solution that works best for all of us.

K.