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Next up is the character known as Michael E Robinson, Jr. (link to original article) He is an acquaintance and all of his ‘facts’ are what he professes to be true. As you take a look at the article, the fact checking shows that most if not all his facts to be false. He has great zeal and passion about what he’s doing. The problem is, he has been alleged to have scammed money from parents, taking others work as his own, and tends to over-embellish his abilities. His numerous claims identifying him as an ally to the Neurodiversity community are false.

It does leave the question, why would he do such things?

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Lastly, Autism Speaks has nominated John Elder Robison to their Scientific Advisory Board. J.E. Robison is most famous for writing the memoir Look Me In The Eye: My Life with Asperger’s. On the surface, this looks promising. Autism Speaks is finally accepting a person with an Autism Spectrum Disorder into their community.

But what looks good on the surface is not so widely accepted by the Neurodiversity community at large. Mr. Robison states in his acceptance:

Research into causes of autism is important, but I want to see more research aimed at remediation of specific components of autistic disability.

While he sees remediation as a goal, the troubling part is that he wants to still research in causation. The subject has been rehashed again and again. The only true reason to research causation is to find a cure. A cure many do not want for themselves.

To go on, this is just one appointment. The Scientific Advisory Committee has 30 members. He can make an impact in the committee. Perhaps another 5% of research grants will go to Quality of Life research. This does not help their Awareness campaigns that show Autistics to be trapped and hopeless. They do not preach Acceptance. If they did, more than just one Autistic person would have been nominated. They continue to take desperately needed donations out of the communities. What little they do for the Adult Autistic community is hold online “townhalls” that cost $100s to get into which circumvents most Autistic Adults attendance!

This is very displeasing to many. To try to work from within is…

Now, without a doubt, I have met people that meet this rule. I just find myself not. Then again, I don’t think it has anything to do with neurology. I know some people I went to college with that are still maturity wise at a 20 yr level. I attribute a lot of it to the fact that I have kids. My own instinct was to mature with the birth of each of my children. This does not hold true for everyone. Again, I know someone who has a child that doesn’t have maturity.

Also, does being articulate change your perceived maturity level? I was complimented that I am one of the most understandable of the ‘Aspies’ that attend this support group. I’m sure it doesn’t hurt that I am raising Autistic children. So I can understand where the parents are coming from as well as the adults in the group. Have any of you witnessed this phenomenon? Especially those of you raising Autistic kids as well?

I think the 2/3 Rule is very subjective though. It really depends on the circumstances with your life.

When I get the chance, I will see if I can connect to Google Buzz for those that are interested in that as well. I do have a current Buzz page set up for my private use that our twitter site is linked with. But it might be nice to have all social domains covered (except for MySpace because I loathe MySpace).

As most are aware now, DSM-V proposed changes were released today. I’ve had a chance to look over the criteria changes for Autism Spectrum Disorder.

Autism Spectrum Disorder

Must meet criteria 1, 2, and 3:

1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:

a. Marked deficits in nonverbal and verbal communication used for social interaction:
b. Lack of social reciprocity;
c. Failure to develop and maintain peer relationships appropriate to developmental level

2. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:

a. Stereotyped motor or verbal behaviors, or unusual sensory behaviors
b. Excessive adherence to routines and ritualized patterns of behavior
c. Restricted, fixated interests

3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

I look at this from both an adult stand point and a parent stand point. My primary concern is with Criteria 1b. Social reciprocity can often be for children not noticeable until later in years. This can possibly lead to a lower rate of diagnosis in those children in the early years. I suspect though, that most children that don’t show the difference are probably not diagnosed until later at this point anyways.

But as an adult, I know the rules of social reciprocity. If someone does something nice for me, I must do something back. If someone compliments me, I should also compliment them. I can perform these responses. Whether or not they are learned or out of genuine feelings is where the problem lies. As an adult that didn’t get diagnosed until I was an adult, I can see where other adults that may seek a diagnosis would fall through the cracks on this one. Many of us have learned and adapted our skills, but still have other areas of concern.

I can honestly say I have a hard time making and keeping friends. Only those that have stuck by me out of sheer determination from their point of view are the ones I keep. When I try to keep track of friendships, I ultimately fail. And again with the 1a, I know there are times when I miss nonverbal cues. It’s the idea that you have to meet all 3 that is troubling to me. Especially since it’s all speculation on the part of the diagnosing party whether this is a learned response or a genuine feeling.

However, I am very happy to see the addition of Sensory behaviors added. My youngest certainly doesn’t do any of the stereotyped behaviors any more, but has more than enough sensory behaviors to make up for it. This addition I think will help a lot of parents that are on the fence. Not seeing the spinning or flapping hands no longer means that you ‘might’ have a child with Autism.

Parents avoided our gaze, for the most part. Not those that have come to know our family, but some of the others. I tried to keep him away from others because he was flailing and I didn’t want anyone, including him, to get hurt. Every so often, he would rejoin his classmates/friends for a little while.

The older brother of the birthday girl (here forward pseudonym ‘John’ will be used) was very interested and kept trying to talk to myself and my kiddo. He reassured me. He reassured my boy. After a little while, I decided to go ahead and tell him that Daniel has Autism. We haven’t put a word to it with the boys yet because within our household, they are pretty ‘typical’. John said in an instant, ‘I thought so after he came inside the house.’

John went on to explain the horrible things that Autism does. He was describing a boy he knew at school. And by the sounds of it, the boy he was describing was non-verbal and possibly violent. He didn’t seem to feel the same way about his classmate as he did about my son. After a little while, I told him I have a lot of the same problems, but with age have overcome them.

He was instantly confused, I think. He started asking me questions about how I overcame it. What was it like to be Autistic? How did you overcome it? I tried to explain that large crowds still are difficult, and that for some issues I have to take medicine. But this little boy, no older than 11-12, had never heard of being able to help some of the disabling aspects of Autism. In an instant explaining I had Autistic characteristics, it was like his world changed. I was there, with my Autistic son, being Autistic myself.

The part about this that is most complicated, how do we change the perception of these kids? When adults, parents, are showing them the ‘bad’ parts of Autism, that is what they’re learning. We may be combating the parents, but I think we also need to help these NT kids understand Autism isn’t a bad thing. We will be fighting against this message for generations to come because they don’t hear anything else.

I’ve gone to another group that I don’t feel really meets my needs. I continue to go to it, because I feel like some of the younger Aspies could use a role model, even if I’m female. But last night was different. The adults with that were there were mostly my functioning level. Though, I can tell that their major perservation is not the study of ASDs.

One of my biggest ‘obsessions’ is definitely studying ASDs, both for kids with any form of Autism and adults who are more independent. I was responding to everyone’s concerns with my thoughts and ideas. And as I explained more and more, I was drawing more attention on myself. Finally, a ‘mother of’ looked at me and asked who I was and why I was there. It was pretty scary. While I didn’t mind the attention when I was responding, the thought of having to explain myself, even for a good reason, was petrifying.

I think I looked like a typical Aspie last night. I tend to not in day to day things, but when you get me in large groups like that, I don’t exactly know what to do. So I was sitting on the floor (all the chairs and couches were taken), not making eye contact, or even face contact, rocking back and forth, and writhing my hands. When I went to speak, I did so in a stutter until I knew it was truly my turn to speak.

I plan on creating (and have a meeting to discuss this tomorrow) a meetup for ASD adults. Nothing as formal as last evening. Definitely not like the other group. But just something to get together and talk or eat or play games. I don’t have the energy to create something that was structured like last night. The event alone was overwhelming and I had to take a good 15 min after it ended to calm down enough to drive in the car.

It’s also something I’ve been working on in therapy. I was to be able to push those boundaries. Where I’m comfortable without feeling so tense. Do any of you have any tips on how you get through those events?

I will say, out of all the ‘adults with’, I was the only one that expressed having children. Quite a few expressed not being in relationships. And others were working or attempting to find a job which seemed to mean they weren’t looking for a relationship. There was a couple there with one partner that is AS. It seemed to be fairly distributed independence levels.

The reasons for this were many:

1. My grandmothers both made me baker’s helper from the time I could walk.
2. My mother always shoo’ed me out of the kitchen while cooking.
3. My mother was terrified of us kids even making a sandwich with a butter knife.
4. My mother’s OCD tendencies did not allow for us to leave a crumb in sight.  (Funny, I married her male counterpart, huh?)
5. I could not possibly conceive of having more than one thing “going” at a time.  It seemed like utter chaos to me.

I should mention that the chaos thing follows me.  I have the Chaos Arrows tattooed on my right arm.  It is ever-present in my life.  I can NOT function in chaos.  I shut down.  I need order, but I have a hard time keeping order.  The minute I get a hint of things (house, work, kids) getting out of order, instead of fixing it, I shut down and then it becomes a mountain.

But enough about all that…That’s just background.  Here’s what I REALLY wanted to talk about.

What Do You Do When Your AS Munchkins Start Cooking – Unsupervised?

About 18 months ago I started cooking.  The kids were coming to Germany.  I got re-married.  I wanted to take care of everyone.  Turns out, I’m kinda good at it.  I treat it like a puzzle.  I LOVE puzzles.

So does Max.  Max and I are very much alike in many ways.  The whole order/chaos thing.  Well, there are a lot of parallels…

From the time he was born, Max was always very deliberate.  When he was 2 & Madison was 3 1/2 we went to the swimming pool at our hotel.  I would not let go of Madison, but Max didn’t worry me.  He watched every step and I knew he wouldn’t accidentally fall in.  Madison, on the other hand, would watch everywhere BUT where he was going.  (He still does!)

Max has started cooking.  He’s a regular Egg-Aficionado!  He’s woken me up to a plate full of delicious eggs.  I’ve asked him not to cook while Mommy isn’t there to watch, but tonight I realized he’s still been doing it.

I went to get eggs for the dinner I was making and we were out.

I am completely overcome with pride and absolute fear at the same time.  Pride because he loves doing it and feels good about it.  Absolute fear because if something went wrong – Max would shut down.  Just like when the TV comes on too loud on a static channel.  Suddenly, he can’t find the remote.  He can only clamp his…

In all actuality, I am an addict of sorts.   I am addicted to the world I live in.  It is one of constant surprises and amazing wonder.  Sure, I spend a couple of months a year ready to move to a cave and never see the light of day again, but those are just moments.

I am a mother, a writer, war veteran, dog lover, wife, soon-to-be student (again), medic, housekeeper, music nut…Are you getting the general picture?

I have resisted my own dx for years and will likely continue to do so.  I like me.  I don’t want to change me.  Even when me, myself and I are at complete odds with one another.

I followed a very interesting path via Twitter and found this site.  I answered the Call to Arms and perhaps my life can (if nothing else) give YOU some comedy, me some catharsis and “them” some insight.

Without further ado – here are the players in this world of mine.  I like to call it Schizamore.  Crazy Love.  It works for us.

Holly – Me.  I am all over the map.  I love a lot of things, but I lack the patience with most everything in the world.  I am terrible in a crowded room, loud noises and I cannot talk on the phone if there is any outside stimuli.  My friends have often referred to me as having “a lot of layers”.  Even I haven’t figured them all out.

Kris – Husband & Stepdad (OCD, ASocial, Borderline…Anyone else wanna scream it with me?  SPECTRUM!!!)  Kris has no filter and doesn’t play well with others.  He won’t come up a lot as he’s still in the Army and, well…it just isn’t a good idea.

Morgan – Daughter (Artist, actress, sweetheart who has no problem being her own person – closest thing to NT we have here)

Madison – Son (In process of dx but verified Oppositional Defiant Disorder)

Max – Son (Aspie with a lifelong love affair with science.  Sound & touch sensory input issues…Best friend is the dog)

Loki – Our Siberian Husky.  Works hard at keeping us together and functional.  Has a nose for oncoming meltdowns and reacts like you might expect a trained service dog to.

This is my immediate family.  These are the people I can’t live without – Even when we think we can’t live with one another.  It’s all a matter of staggering our “moments”.

Nice to meet ya!  Pull up a chair and get comfy, ya hear?

ASParenting was started with the idea that all parents with Autism Spectrum Disorders could find a place of support and strength. What I have found, though, is that I’m not supporting all ASD parents. I’m only one person with one set of experiences. I know nothing of raising NT children, or a mix of NT and AS children. I know nothing of the perspective of a father. Nor do I know what it’s like to be a parent with adult children.

So today I’m asking those of you who peruse this site,  if you or someone you know would like to help blog on this site, to send an email. No matter your background, whether self-diagnosed or professionally. I would like to give the chance for other parents to blog about things we all could benefit from.

If you or someone you know is interested, please send me an email. You can use the contact form, or email directly to melody@asparenting.com. Just a little introduction is all that’s needed. I will also make a post on the forum if you’d like to drop your info there.

1. ‘All children are different.’
   • This one seems pretty self explanatory. But in my case, my son seems to be different than ALL children.
2. Peer pressure is not always a bad thing.
   • We’ve discovered that my youngest will go potty at school, but not at home. So I explored this. What was different? We use the same methods. We have same premise of First-Then. Then it dawned on me when his SLP from school was here. She said he realized he got to go back to centers faster if he just pee’d.
   • She also said that they didn’t have anything as eye-catching as Super Mario Kart Wii. It turns out they have something even more so. They have his friends. You can pause a game. You can take a game with you. But friends? They keep going whether or not you’re there.
3. Reinforcement only goes so far.
   • He LOVES the idea of a potty party. He LOVES stickers. He LOVES edible treats. Combining these together and it still doesn’t help him go. Though, I wonder if I had a big gift wrapped box with party hats, stickers and candy just out of reach if that’d work.
   • Tomorrow will be the test on this. I am going to create a sticker chart tonight. In the morning, there will be a ziplock baggie of skittles. He knows we have cupcakes and party supplies waiting, but they will go into a big box. Everything will be right in front of him waiting for him to go pee.
4. You don’t actually WANT to know what everyone else has done to potty train their kids.
   • This ends up being an off-shot thing I’ve learned. Many parents seem to think abuse is the way to go. No wonder some kids don’t train for years. I’ve been told to stick my son in a cold shower. That I should spray him with cold water when he goes poop in his pants. IE torture.
   • I should only buy one pair of underwear. And each time he makes a mess in them, he has to watch the washer and dryer until they’re done. IE seclusion.
   • Some things you just don’t want to know about people. I know that there are abusive parents out there. But these suggestions came from people who in every other area treat their children well! Parents will go so far as to abuse their child to get them trained.
5. ‘Positive Practice’ may be the sure fire way to train.
   • But I will never ever EVER use it again. I’m sorry, but the use of aversives on Autistic or any disabled or non-disabled child should be outlawed. This goes right along with Restraint and Seclusion to me! Apparently, conditioning is not only used for dogs, but for CHILDREN as well. I’m sorry, but there is something wrong with the practice. Why reduce a child to the level of an animal,

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