CAFE Bonnie: Coffee Autism Faith Explored

CAFE Bonnie: Coffee Autism Faith Explored

This is a new blog that I discovered that Bonnie writes. She is the speaker, author, and the founder of National Autism Resources and she has a son who is on the spectrum. I found her blog to be very informative and quite enjoyable to read. There is no rambling and going on about personal problems but just pleasant insights and great resources.

I plan to highlight the National Autism Resources blog and business website very soon, so be on the lookout for that because they are fantastic and full of information as well.

Griffin was at his worst last night as far as getting his homework done. His behavior was not bad but he was just so distracted it was just horrible! I swear that I have tried every trick in the book: the timer, the schedule, taking breaks, taking away privileges, being firm, being super patient, reward system, doing work in the morning vs. doing it at night, always sitting with him to be there for help when he needs it and to help him focus, reminding him every 4 minutes to do his work and to stop staring out into space, I have tried giving him sensory time when he takes breaks like playing with play-doh or jumping on the mini-tramp or drawing or reading or whatever I can think of...... Nothing works!!!!

Anyone have any ideas? The IEP is scheduled for the 26th and the advocate from the Autism Society is going with me. We are supposed to meet for coffee soon to go over some information about Griffin beforehand. I am so eager to get this meeting started and done with to finally have some goals for Griffin. He has been without an IEP for a few months now and I know that is not legal but they did it. And before that he was on his 1st grade IEP because they wouldn't grant me the meeting that I practically begged for since August.

I am seriously thinking about changing schools in the fall to a school that has an autism program. Even though Griffin would be in a mainstream classroom he would have the expertise of the autism teacher within the school to use as a reference for his teacher. And maybe he would actually get to do some activities with the other autistic students. I will keep you updated.

Autism through the lifespan #1: Diagnosis Autism

Autism through the lifespan #1: Diagnosis Autism

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Getting a diagnosis is often a life-altering event.
Part one of a nine-part series covering autism’s impact through the lifespan. Erika Beras, behavioral health reporter at WDUQ in Pittsburgh, reports.

Autism is a neural-developmental disorder characterized by social and communication impairments and repetitive or restricted interests. The rates of autism are drastically up – some years ago, it was 1 out of 10,000. Just a few years ago, it was 1 out of 500. When I started doing the interviews for these stories the rate was 1 out of 150. Since then, the CDC has released data that it now affects 1 in 110 and possibly 1 out of 100. That’s one percent.

More on autism:Visit our Autism page.

So who are all of these people? Are these new cases? And why? Or are these children or adults who have never been diagnosed or were diagnosed with other things?
We’ll attempt to answer these questions. Along the way we’ll meet dozens of children and adults with autism – and their parents, teachers, doctors- in the Southwestern Pennsylvania area.
For anyone with autism, the journey officially begins with the diagnosis. But before you get a diagnosis, there are signs that something is amiss.
Parents usually notice the signs in the first two years of life.
Sherri Barnett, Joy McDaniel and Patti McCloud.
Sherri Barnett: My brother watched him one day and a friend of his came over, his son was autistic. He looked at my brother and he said ‘Do you know your nephew is autistic?’ And my brother went, ‘what the heck is that?’
Joy McDaniel: We were a military family and I noticed she was just different than the other children. Pleasant. Oh so pleasant, so sweet, so funny. But she didn’t have the vocabulary or like the, what’d you call, like baby-trash words. We went to the military hospital and went to see the pediatrician and he said, ‘No two children are alike.’
Patti McCloud: We have four grandchildren that were born in the same year in my family, I come from a family of ten so there are a lot of grandchildren. Jordan was born first in March and then there were three others born in the same year. Jordan was developing slower than all of the other kids.
Some children develop typically and then around age 3 seem to begin to regress- losing the language or motor skills they had learned. Experts say an ideal diagnosis should occur before age 3 and treatments, such as language and behavioral interventions should begin immediately afterward.
There’s not one symptom but a variety of symptoms. For example, some kids will have great eye contact but no language. And within autism there are different classifications. There’s classic autism, there’s pervasive developmental disorder, there’s Aspergers.
Diagnosis is based on behavior. There is no cause. There is no cure.
More and more it seems like autism is part of our national discourse. But for many of the people I talked to for these stories, autism was something they had never really heard of. Except in one case.
Rainman the movie: Raymond! Raymond! Am I using you Raymond! Yeah… Shut up! He is answering a question from a half-hour ago!
Lynn Cass: Oddly enough, the first movie my husband and I saw together when we were dating was Rainman and that was pretty much all I knew so when the pediatrician said to me, he might have autism, I said to myself, well he can’t have autism because he’s not…I looked it up online and I thought about what that movie was and I thought, oh, well that’s not him. And now, all these years later, I realize if you meet one child with autism, what you’ve met is one child with autism they’re all so vastly different.
That’s Lynn Cass whose son Alex, now 12, has autism.
Much of the last decade has been about her and her husband educating themselves about autism.
He is non-verbal and has his quirks but his parents say he has come a long way. Much of it the result of early intervention behavioral services. Experts say the earlier you get those services, the better the person’s long-term outcome.
In some cases though, a diagnosis may not come until the teen years. Pam Nocera’s son Vince is now 24. From the time he was a year old, she says he didn’t show any interest in interacting with other kids.
Pam Nocera: At the time, I asked questions, I had him tested at various places and nobody could ever tell me what the problem was because he wasn’t a behavioral problem in school, he was smart, his grades were good and those seem to be two things that when they are testing, they look at those two things for signs and he wasn’t exhibiting any of those signs so they weren’t able to tell me what was going on but as a mother I knew something was different.
It wasn’t until he was 15 that Vince was diagnosed.
Vince Nocera: I had uniquenesses about me that I didn’t exactly fit in so to speak with those directly around me, direct peers, but I never thought a great deal of it because in so many words, everybody is different anyway. So…yeah, but still, I did think that I would be unique to a point where it would be conspicuous.
Pam Nocera: Its weird cause its like, sometimes I feel almost easier to think, well, I have a son whose a little bit different, ok, I’ll deal with it but then you have a son whose different and this is an actual diagnosis that goes with it, it changes it up a little bit.
Increasingly there are adults getting diagnosed.
Caitlan Freedman: I was actually diagnosed quite recently. I’m thirty now, I was diagnosed at 29 and this was after several years of research on my part and trying to figure out what was going on because I knew that I was not processing information like other people and I’ve known this from a very young age.
That’s Caitlan Freedman. Asperger’s Syndrome, which she has, wasn’t an official diagnosis until she was 14. Although as a child she exhibited many signs, her parents were very protective of her and didn’t want labeled with anything.
Caitlan Freedman: At that point, autism as a diagnosis was a sentence for being institutionalized. And my parents knew there was something going on but they didn’t want to, I think, to pursue it as aggressively as maybe they should have.
She says it was sort of liberating getting a diagnosis.
Caitlan Freedman: I felt kind of relieved in that I never quite knew whether it was just all in my head because I had so many people tell me, “Oh your just not trying hard enough, oh, if you just tried harder to you know, talk with people, you’d do there’s nothing wrong with you, if you just put a little more effort into it – and I was putting so much effort, I was struggling so much.
Her partner Phil was diagnosed 6 years ago. He’s 46.
Phil Garrow: There was a time after I was diagnosed, there was a period of regrouping, there was a period of saying, OK. Here’s what it is and you are never going to get better from it. There was no amount of therapy, I had had about twenty years of therapy by that time.
It wasn’t an easy thing to hear.
Phil Garrow: I suffered a little bit of a depression, about a month after the diagnosis, to be able to come down and decide what I was going to do with my life now that I knew what the problem was.
For many people, a diagnosis is often coming after they’ve had a wrong diagnosis.
As a child Jeff Hudale was diagnosed with schizophrenia.
Jeff Hudale: When the doctors did some EEGs and the like on me and they saw wait a minute these brain cells don’t match up with a schizo, its like, this is something different.
He was a teenager then and says the new diagnosis didn’t really have much bearing on him.

Jeff Hudale: It was kind of I thought I had this and now I have that.
Its really unsure for some people what it actually means. For some it may be the end. Of sort of wondering and some uncertainty. But for others it’s kind of the beginning. Kim and Richard Antesinis’s nine-year-old son is severely autistic.
Kim Antesinis: We were kind of relieved because we had a diagnosis and we thought that would give us a path to follow and we could work on fixing it and have some resolutions. But there are no resolutions.
Richard Antesinis: The day it happened, it was devastating. The doctor told us our son would never speak to us. Would never be able to take care of himself or feed himself or use the restroom by himself or any of these kinds of things. And he was 16 months old.
Some parents say a diagnosis is sort of its own living entity. It changes with everything else around it.
Lynn Cass: I think that how you cope with a diagnosis evolves over time. I think its still evolving now. Because now that he’s 12 years old, now I’m starting to think about and worry about what is he going to do and be as an adult. Where will he live, what will he be able to do, who will take care of him. Friends of mine and myself we all say to one other, well, I've got to live forever, because who will take care of him 20, 30, 40 years from now.
Erika Beras reports on behavioral health issues for WDUQ in Pittsburg, PA.

"Nerlika" an Autism Service Dog in Canada....Guest Spot

I found this wonderful blog that you can access above and I do encourage you to do so, because there are some beautiful pictures that I didn't include. It is about Nerlika the autism service dog for Anwen who lives in Canada. I got permission by the mother/author of the blog to publish this because I think that it is a great story and that it should be shared with the world. So many people do not realize that there are even autism service dogs out there and available, I have found that most people do not understand that a service dog can help an autistic individual. Getting stories out like this one helps others to understand what it is that they can do to be so helpful in the everyday lives of the individual and the family. This is their story:

Nerlika is a wonderful Siberian Husky, who aids Anwen in her daily functions.

It is hard to explain to a person who does not understand autism, or an autistic child what the role of a working dog can do.

1. My autistic children do not sleep as long as regular children, they are up quite late, and up early, Nerlika is being trained to bark when they leave their bed, or if they are running the taps and/or Nerlika comes to get me if they are doing something they shouldn't in the wee hours of the morning.

2. My children are prone to outbursts, or shutting down in public loud places, Nerlika is like a comforter blanket, or a child’s soother, she is there to calm them down, to give them a constant presence while they learn to deal with the situation, or to wait it out with constant love and affection while they come to terms with the environment around them.

3. They are prone to bolt in parking lots, or wander off, Nerlika is there to make sure they are close at hand, or if they strya a bit to let out a bark, so that way I can juggle all 3 children in public with more ease and confidence.

4. My children had a very hard time with getting their hair wet, or washing their hair, brushing their teeth, or letting me know they were hungry, since they are often at times in their own world, feeding the dog, bathing the dog, cleaning up after the dog, made them aware that they have to do the same things. When the dog has her big breakfast, so do they, and eat they can. When the dog brushes her teeth, they race to do the same.

5. Nerlika has awoken some speech in the kids, they want to interact with her, and to teach her key commands, or speak sit, stay, or down, she is just 2 years old, and still learning, but the kids help out in any way they can. Most of Nerlika's commands are hand gestures, so all 3 children can talk to her.

6. Nerlika is not socialized with other dogs, she is treated like a person and a member of our family unit, she is not encouraged to play with other dogs, or when her vest is on, no one but the children are allowed to touch her.

7. Nerlika is also being trained during this summer, about the kids swimming and being in water, she will wade out and herd them back in, or bark if they are too far, she was the first dog allowed in the West Edmonton mall Waterslides, and did very well. She did not bark, cower, or cause any problems but watched the children and provided Anwen with a constant comfort until she was ready to play, and play she did, she looked like a normal child by the time she got relaxed enough to get wet.

8. Nerlika barks not a lot in the back yard, but a couple times to let me know, someone is close to our space, or my truck. People do not understand that because they look like they are 7, 6 and 4, that they have the mental ability to know stranger danger, My children will go off with strangers, Nerlika is trained and encouraged to let out a couple of barks until I either pop my head out or come outside to see, until she sees my face, she will continue to bark and warn the person to back away. My neighbors have failed to take the time to spend time with Nerlika so she knows them, I asked them repeatedly to do so but gave up a year ago.

* Nerlika is always by Anwen's side since she is almost non verbal. When Anwen has a meltdown it takes me almost 30 minutes to make her more comfortable, since Nerlika has been at her side, she is able to draw her out much quicker, and give her the confidence to get out and see the world around her. This summer has been the best in getting out and about. All thanks to having Nerlika was I able to juggle the children, go to the PNE, Camping, Galaxy Land, Waterslides, and feel that the kids were safe.  I can relax and be a much better parent with Nerlika in our family unit.

Autistic program projects prepare students for the real world

Autistic program projects prepare students for the real world

By Haley Landgraff | Seaholm Highlander

Walk downstairs into the special education wing on any given day during second hour, and chances are you will find 17 kids hard at work, stringing beads together to make jewlery, cutting and gluing cards together, or shaping sticky dough into the form of a dog biscuit.

These are snapshots of the many things that keep Seaholm’s autistic program hard at work on a daily basis, creating tokens to signify their accomplishments as well as things to sell around the community.

“The Christmas cards are the main focus of September and they go until mid-November. We sell them to parents, teachers within Birmingham and we also go to craft shows,” said special education teacher Kristen Ziebell. “Our main focus right now is Christmas cards; we’re expanding soon and doing birthday cards and hopefully thank you cards.”

The sales happen all over Birmingham, helping the kids see the progression of their work.

“We have [sold at] the Bingham Farms School craft fair which is in the fall. I have spent many Saturdays selling these at conferences,” said special education teacher Debra Lloyd. “Hopefully we’ll be able to go to the farmer’s market for a couple of Sundays and have a table set up there. I’ll take some of the boys to help me sell.”

The selling of the dog biscuits uses a different approach.

“The dog biscuits sales are online,” said Ziebell.

“We sell them to staff here,” said special education teacher Karen Mellott.

“We put flyers in their mailbox occasionally.”

The program allows for every child to participate, regardless of their level of autism.

“There are 17 kids in the program, and all of them participate,” said Ziebell. “Each classroom has three different businesses.”

With the three different businesses, there is something for every kid to help them feel like they accomplished something.

“The dog biscuits we make are for the lower functioning kids,” said Ziebell. “Then we do beading. We do key chains which have either bigger beads or smaller beads for each level. And then we have the cards, and both the lower functioning kids and higher functioning kids can participate because there’s gluing, there’s stamping, there’s punching, there’s cutting, so it just depends on their level of what they can do. They each participate in something for each business.”

Every child in the program is given the opportunity to work to their potential, as well as move forward with their work when they’ve improved.

“Half of our kids can do the beading well,” said Lloyd. “We try and get the other half to start with the bigger beads that we may not necessarily sell, but just to get them into the fact that they have to follow a pattern. Hopefully, we will get more ‘beaders’ as time goes on.”

The way the business is set up gives the kids involved a chance to see the process from start to finish, and enjoy every part of it.

“The kids love it. It’s something different,” said Ziebell. “They actually get to see the finished product. They go to craft shows and they go to conferences and sell and they actually see it unfold.”

“I’ve taken a couple of the kids on Saturdays and they help me sell,” said Lloyd. “They can see that we make it not just to make it, but for a purpose.”

The money they make from the business reimburses them for the supplies used, but also helps them to purchase some things for the program and also have a few special treats.

“Most of the money we put into buying more things, but if we have extra money we buy some things for the classrooms,” said Lloyd. “In years past, we’ve taken our peer mentors out with us for a day off of school to a movie and out to lunch. So it’s kind of one for all and all for one, and everybody has fun.”

The reaction the instructors get from their students makes the whole process worthwhile, and the kids feel important for their accomplishments.

“They’re very proud. They’ve actually been interviewed by the news several times and they’ve been on TV,” said Ziebell. “When we play it back for the kids they have huge smiles on their faces.”

The ultimate goal of the project is to prepare the students for their lives after high school, and to encourage them that they can do anything they set their minds too.

“We were trying to find something for them because after high school our kids go to a secondary program and we’re trying to help prepare them for a real life situation,” Ziebell said. “They get jobs after high school, so we thought we would start in the classroom and build it to a real life situation.”

Source: http://seaholmhighlander.com/lifestyles/student-life/735-autistic-program-projects-prepare-students-for-the-real-world

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A Special Photo for Our Irish Friends

This photo is for all my (over 200) Irish friends on Facebook who are so kind and wonderful whom I love dearly. This is one of Griffin's favorite shirts so I had him model it for the camera and for all of our friends. And Abby had to be in the photo too of course.

Still waiting for the IEP by the end of the month, will keep you updated. Griffin is still doing great. I got some great news yesterday.....Griffin and I both got full scholarships for horseback riding therapy! He will go once a week on an afternoon and I will go on Friday morning! It is called Free Rein and they are just super fanstatic people there. I am so excited! Griffin started horseback riding therapy last year but we couldn't afford the gas plus it wasn't a full scholarship so he had to stop but he missed it when he couldn't go. So now he is excited again.

I want to sign him up for special needs baseball but don't think that I will have enough money to do so because I had to replace the window switch on my Volvo and it was $300.00! Then my computer crashed, the one that had all my school work on it and it ended up being $75.00! So financially this month I am not doing too good. Good thing we have enough food, hope we have enough $ for gas to get to all of our medical and therapy appointments the rest of this month. We have so many each week between the two of us.

I feel bad though because I owe so many of my friends money and I was not able to pay them back this month after the car and the computer fiasco. I sure hope that they understand because I know that they were depending on me paying them money this month. I hate it when I can't pay back money that I owe especially when it is to my friends. They were there to help me out when I needed them and now I can't come through for them, not that I can help it but still....

We had a thunderstorm today! It is so nice to have one instead of snow! I just love that spring is just around the corner!!!

NO I.E.P., New Diet is Working Great, and Some Really Good News

I spoke with the same woman who told me that I would have an IEP this week and she re-negged on me and said that they would not finished observing and testing Griffin until the end of the month. She said that there was some question as to whether Griffin needed services or not and there was some who contested that he did need services and that is why it was taking so long. And I asked why I had no say or part in the whole matter and she said that I would get my chance to do so at the IEP. I don't think that that is satisfactory for me and I am going to call the Autism Society and see what they have to say about that.

The woman told me that they are still using the ( expired/outdated 1st grade ) IEP from South Carolina where we moved from in July and he hasn't attended school in a year. Their deadline was Jan. 26th for the IEP and I don't see how they can get around that. I just feel like I am being jacked around here, does anyone else get the feeling that that is happening to me? I swear if I didn't have school myself I would just keep Griffin out of school until I was granted an IEP and tell them to deal with it without him around but that would be doing Griffin a great disservice, it would not be fair to him to keep him out of school.

We went to see his psychologist today and we both agreed that Griffin, now that he has been off of the refined sugar and on the low-glycemic diet, is so subdued that it is time to decrease his Abilify. Griffin is so mellow now it is amazing but most of the time he is too mellow. I swear I thought that I would never be saying that! Even when Griffin went into my doctor's office he said that Griffin was far more calm than usual. Sure I let him cheat here and there but it doesn't make a huge difference that is not unless it is candy and in that case I can see immediate results! But McDonald's now and then is okay and potato chips sometimes is okay....I am not going to expect him to give up all the stuff in life that he loves so much. I haven't decided yet if I am going to tell his doctor yet or not. I don't care if she cares or not frankly, because it is working regardless. I am giving him 1/2 a packet of "good yeast" to replace the bad yeast that may be present in his tummy but I don't think that Griffin has yeast because if he did then he would have had a fit when I took away all his candy and refined sugar because his body would have craved it. He hasn't even asked me for ketchup.

I bought him sweet potato fries at home and he loves them....so do I and they are so good for us too. I found some ice cream that is sweetened with Maltitol instead of sugar and diabetic cookies sweetened with it too. He has had no complaints and I am so happy. He has also been eating fresh fruit when I can find it inexpensive like bananas or apples or grapes.

My computer crashed and I have to take it in tomorrow. Don't know what happened but it won't boot from the hard drive. It only wants to boot from cd. I dread finding out what has happened and how much it costs. It has all my e-mail addresses and ALL my school work on it! I feel impending DOOM!!!!

I do have a bit of good news though......I made a 95 on my first Psychology101 exam!!! I am so happy and I love the class, lots of work though. It is keeping me so busy. I hardly have time for facebook anymore and definitely not for TV (cable) that I just got for Griffin. Wish that I had time to watch a movie or a show now and then but I have so much reading to do! Speaking of.....Got to go do that right now.

Hey, if I had your e-mail address before please send it to me privately (on facebook) so that I can have it  again....Thanks!!

I Finally Have Someone's Attention.....Getting an I.E.P.

I was talking to my apartment manager who also has an autistic son but in another school (high school) and she got upset when she heard me tell her that Griffin's IEP had expired and that they had not granted me another one yet. So she made some phone calls then gave me a number to call. The person who I called was someone very important in the district either the superintendent or someone higher up because I truly got her attention when I told her what was going on.

I told her that I had been requesting an IEP since the beginning of school in August and that the school was dragging their feet and that I had not been taken seriously and just been blown off the entire time, that Griffin has been tested for months and observed over and over with no results. So she said that she would call the school to find out what was going on.

By this time it was already after 5:00 p.m. but she took me seriously and was going to get results for me. She called back and said that she got in touch with a man forgot his position but someone from the district, who was familiar with Griffin. This man said that Griffin had been receiving services special ed and speech that THEY had decided to keep him in. I chimed in very quickly to let her know that I had been left out of the loop the entire time that he had been in school and that I was NOT part of the team and that that was NOT acceptable to me and that I was entitled to an IEP a long time ago. She did the math and figured out that legally they were supposed to have had the IEP by January 26th. So legally they are way out of line and could be in big trouble if I chose to go that route.

She, having realized this mistake, quickly told me that she promised me that there would be a meeting this coming week no matter what. That she would be in touch with me on Monday and let me know when it would be. The only problem with that is that it is such a short notice for the advocate at the Autism Society I hope that she is able to come to the meeting with me. I am going to be so prepared with notes in hand and I am going to take the tape recorder and record the entire meeting. If they do not offer an apology I am going to diplomatically demand one. That is the least that they can do. I want an explanation why there has been no communication with me as to how Griffin has been doing in his class and why he has been regressing since our move to North Carolina......something is going on and nobody has let me know what is up.

His speech teacher told me that he has a self-esteem problem and not a speech problem and that pisses me off and so untrue. Griffin is a happy-go-lucky guy and obviously has a speech problem which his private speech teacher has acknowledged. He never used to have the problem nor with his handwriting but he has regressed since July and I just wish that I knew why. I just hope that he is not being bullied like his psychologist suggested might be happening because how am I to know especially if his teacher is not paying any attention to him? I asked her to show this tape that I have that is a program on bullying but she refused to and I am trying so hard and she just is not cooperating. What else should I do?????? 

Wine....It is Healthy......It's Official....and I Love It!!!!

A Glass of Wine Every Day May Be Good in Six Ways




Health

Debra Gordon


The list of wine’s benefits is long—and getting more surprising all the time. Already well-known as heart healthy, wine in moderation might help you lose weight, reduce forgetfulness, boost your immunity, and help prevent bone loss.



With America likely to edge out France and Italy in total wine consumption in the near future, according to one analyst, and with women buying more than 6 out of every 10 bottles sold in this country, we’re happy to report that wine may do all of the following:



1. Feed your head



Wine could preserve your memory. When researchers gave memory quizzes to women in their 70s, those who drank one drink or more every day scored much better than those who drank less or not at all. Wine helps prevent clots and reduce blood vessel inflammation, both of which have been linked to cognitive decline and heart disease, explains Tedd Goldfinger, DO, of the University of Arizona School of Medicine. Alcohol also seems to raise HDL, the so-called good cholesterol, which helps unclog your arteries.



2. Keep the scale in your corner



Studies find that people who drink wine daily have lower body mass than those who indulge occasionally; moderate wine drinkers have narrower waists and less abdominal fat than people who drink liquor. Alcohol may encourage your body to burn extra calories for as long as 90 minutes after you down a glass. Beer seems to have a similar effect.



3. Boost your body’s defenses



In one British study, those who drank roughly a glass of wine a day reduced by 11% their risk of infection by Helicobacter pylori bacteria, a major cause of gastritis, ulcers, and stomach cancers. As little as half a glass may also guard against food poisoning caused by germs like salmonella when people are exposed to contaminated food, according to a Spanish study.



4. Guard against ovarian woes



When Australian researchers recently compared women with ovarian cancer to cancer-free women, they found that roughly one glass of wine a day seemed to reduce the risk of the disease by as much as 50 percent. Earlier research at the University of Hawaii produced similar findings. Experts suspect this may be due to antioxidants or phytoestrogens, which have high anticancer properties and are prevalent in wine. And in a recent University of Michigan study, a red wine compound helped kill ovarian cancer cells in a test tube.



5. Build better bones



On average, women who drink moderately seem to have higher bone mass than abstainers. Alcohol appears to boost estrogen levels; the hormone seems to slow the body’s destruction of old bone more than it slows the production of new bone.



6. Prevent blood-sugar trouble



Premenopausal women who drink one or two glasses of wine a day are 40 percent less likely than women who don’t drink to develop type 2 diabetes, according to a 10-year study by Harvard Medical School. While the reasons aren’t clear, wine seems to reduce insulin resistance in diabetic patients.

Thyriod Medicine and Progress with New Diet

My doctor deity who is so thorough and whom I love dearly for being the best doctor that I have ever had in my life has found that I have a thyroid problem. He tested my thyroid levels twice just to be sure and definitely I have low levels so I am now taking medicine for it. And I have noticed a huge difference in several different ways. I have more energy, I feel more balanced mood-wise, and I am sleeping much better.....well, that is another story. I don't think that I need my sleep meds any longer because I am oversleeping  and sleeping too hard so I think that I don't need any help with the sleep meds. Tonight I will try to sleep without them. This diagnosis is my blessing in disguise because I have not been able to lose weight no matter how little I eat nor how much I exercise so this should help me a lot now!

Now I feel more confident that I can actually lose weight since my thyroid will be more balanced. I plan to go to the pool everyday if I can and to workout in the gym and weight train if I can as well. I need to strengthen my  upper body so that I will be able to swim more easily.

Griffin made the Geico Legos up above, he is really good with his creations as far as the Legos go, which is great because he needs to work on his fine motor skills. My friend Melissa told me that her son wrote much better on regular paper so I thought that I would give it a try with Griffin and sure enough he did such a great job, so much neater and so much easier to read! His teacher was just thrilled that she could read his writing and that he did such a great job. He seems to be a lot less frustrated doing it that way too, he even corrects his mistakes without getting upset like he used to on that old dotted line paper.

The low-glycemic diet is working great. Griffin is making the transition quite easily with no problems at all. He is eating whole wheat pasta, sweet potato fries, and vegie chips instead of potato chips and he loves them. Oh yes and he is eating much more fruit, yogurt, oatmeal, and the cookies he eats are sugar--free and he doesn't mind. I let him cheat now and then when we are out and he needs to eat I take him to Mc Donald's for a hamburger and fries but that is rare. No matter what he eats his behavior has improved exponentially don't know if is the diet or coincidence. Much fewer meltdowns/tantrums lately, much calmer and when he does have one he recovers so much easier.

Thank You Jazzygal for the Sunshine Award

Thank you Jazzygal for being so kind as to share this beautiful award with me, especially since I have never gotten an award before.....seen some fellow bloggers get them but never thought that I would. I have had this blog for 5 years and have had many ups and downs, great joy and disheartening pain, but it has been a great journey all the way. So, it is so nice to be recognized as having a blog that someone or many enjoy reading.

It is my pleasure to pass this award on to a dear friend of mine who has always been there for me for many years now Melissa H. at I Don't Need Excuses she has been there for me through thick and thin, through all the hell and high water, with all the pain and joy, in fact, it has been so many years I can't even remember how long it's been. I want to thank my genuine and precious friend by sharing this award with her. Thank you Melissa for always being there and lending an ear and listening when I've had to vent. I don't know how I would have gotten through it all without your help. I love ya Girl!!!

All my other friends that are on Facebook have gotten the award from one fellow blogger or another and for that I am glad. It is so nice to be amongst so many wonderful women so many empowered women who fight for their children and at the same time have so much kindness and compassion to go around no only for their families but for me/us the other women on there. I have over 200 friends and most of them are mothers and it is my goal to get to know as many of them as I possibly can because we all have so much in common. I just love the friends that I have already connected with and communicate with on a daily basis, it is so nice to have so much support right here in my very own home. Hugs to all of you!!!!

I've decided to try the low-glycemic diet for Griffin that will eliminate carbs (his favorite foods) and refined sugars and give him whole wheat pasta and bread instead. I think that we might be able to do it because I will be able to find substitutes in the regular grocery store and not have to shop at the natural food store. The doctor gave me some good yeast (not good bacteria) to give to him slowly after I have weaned him off of the carbs to replace the bad yeast (if it does in fact exist) to see if it seems to help his behavior. It should also help him not be constipated anymore which I usually just give him apple juice for and it works. I will try it for awhile and see if he will eat the foods that I offer to him and see if there is any improvement. The doctor did say that if I gave him the good yeast too much too quickly then he will get worse before he gets better so I have to be careful.

I told her that I cannot and will not do the GF/CF diet, I don't believe that it will help, I believe that it is too radical, and I know for sure that I cannot afford it. She understood and that is how we got to this point. We will be testing him for allergies still and his stool and I am very interested in how those come out. He never seemed to have a reaction to food or drink but it could have just been a delayed reaction or a behavior that I didn't interpret as an allergic reaction. Mostly his poor/bad behaviors are when he comes home from school which could be because his blood sugar is off balance from not eating lunch or eating the wrong things at lunch. I know that he must not eat much because he is a grazer and never eats fast so for sure he is not eating much. I don't know if I can do this new diet and buy foods for his lunch.........we'll just have to see. I am keeping a log of what he eats and what kind of behavior he has after eating, that should be of some value.

Autism and Asperger's in the DSM-V: Thoughts on Clinical Utility by Nestor Lopez-Duran PhD

This is a long article but a very good read especially if you are interested in the hot debate on the Autism and Asperger's merge in the DSM-V. It is an unbiased opinion, a clinical opinion on the issue:

Last week after writing about the DSM-V “Temper Dysregulation Disorder with Dysphoria,” I received several emails asking my opinion regarding the proposed merger of autism and Asperger’s disorder into a single ’spectrum’ category. This change has clearly generated some significant political debate in the media and the blogosphere, with some in favor of the change (see for example Dr. Roy Ginker’s NYT article), while others have expressed reservations about the potential impact that this change may have in the autism and Asperger’s community. So I wanted to keep my contribution to this discussion somewhat removed from the political/social issues associated with the change, and instead focus on the scientific/clinical basis for this specific move. Thus, my aim with this post is not to take a position for or against the proposed DSM-V changes. Instead, I simply want to provide some background information about some of the research data and clinical issues that may have contributed to the DSM-V committee’s decision to propose the merger of all ASDs into a single category.




As simple background, according to the DSM-IV, the basic diagnostic distinction between autism and Asperger’s disorder is absence of clinically significant delays in language, cognitive development, and adaptive functioning in the Asperger’s group. The rest of the diagnostic criteria (impairments in social interactions, restricted repetitive and stereotype patterns of behaviors) between autism and Asperger’s is identical. This makes it difficult to differentiate children with Asperger’s from those with High Functioning Autism (HFA; i.e., those who meet the diagnosis of autism but perform in the average to above average rage in intellectual tests). Therefore, two teens with otherwise identical clinical profiles would be diagnosed differently if they differ on their history of language and cognitive delays. The child with a history of language/cognitive delays would be diagnosed with HFA and the child without a history of language/cognitive delays would be diagnosed with Aspeger’s. I mention this because any discussion about the science of the possible differences between these two categories is limited by the fact that both groups have been selected, by definition, to be different. Thus, the question is not whether these two groups are different – they are different because we have defined them differently. The question is whether these two groups actually represent two distinct typologies that go beyond the distinction of language/cognitive delay vs. no delay.



So what would drive the DSM-V to propose the merger between Asperger’s and Autism? In essence, the questions are 1) whether these two conditions represent two different disorders or are simply variations within a larger spectrum, and 2) whether having two categories, as defined today, is clinically useful. If Asperger’s and Autism are simply the same disorder separated by an arbitrary distinction (language/cognitive delays), having two categories would not help us in our understanding or treatment of the conditions, and keeping them as separate categories may be an obstacle for research because it encourages researchers to focus on a domain that may not be relevant or informative. However, if the language/cognitive delay distinction reflects differences between two truly distinct categories, the existence of two categories rather than one should help us make more effective interventions, inform our clinical decisions, or help us better understand the phenomenology of both conditions. Has this been the case?



Let me address the clinical impact of these two conditions from the perception of clinicians (Note: although I am basing these statements on my experience as a clinician interacting at academic/training settings, I admit that this may not represent the experience and practice of all clinicians). I interact weekly with graduate students who are learning how to conduct neuropsychological evaluations for children and adolescents. Often these students have already developed a schema, or prototype, of the child or adolescent with Asperger’s. They would describe such a child as someone who has intense and unusual interests, maybe superior skills in some area such as music or art, rigidity in behaviors and interests, and social and communication ‘deficits’ leading to difficulties interacting and relating to others. The problems begin when we start seeing actual assessment cases. For example, recently a doctoral intern and I sat in supervision to discuss a case of a teenage boy who could be described as having a “perfect” Asperger’s profile, fitting both the student’s schema and the DSM-IV criteria; except for one thing: the client had a documented history of language delays. There was no question about the diagnosis: If the teen had a history of “language delays’ the diagnosis is autism. My student then asked me, so if this is HFA, how does Asperger’s look like? I replied, just like this.



Therefore, in clinical settings, HFA and Aspeger’s disorder look mostly identical, assuming the clinician follows DSM guidelines. But the most important question is whether the current diagnostic difference is clinically useful. When debating the Autism vs. Asperger’s diagnostic question, I have always asked my students and supervisors whether the diagnostic difference would change anything regarding our approach to the case. This is the most critical question: would our recommendations or conclusions change based on the final diagnosis that we provide (autism vs. Asperger’s)? The answer is usually, if not always, no. Given identical clinical profiles, the recommendation for treatment, school accommodations, parental interventions, and so forth, would be the same for two adolescents who only differ on the presence or absence of language delays in early childhood. The provision of a diagnosis of autism vs. Asperger’s may lead to different political/personal/social consequences, but clinically, the current DSM-IV distinction between these two conditions, and the research that has come out of this distinction, has not informed or improved our clinical practice (e.g., selection of treatment, assessment, prognosis, etc). This is likely one of the main reasons that led the DSM committee to suggest the merger of Asperger’s and Autism.



But why has the DSM-IV distinction failed to improve clinical services or lead to a greater understanding of these conditions? One possibility is that these two conditions are variations of a greater spectrum and that the language/cognitive delay difference is arbitrary (see for example Bennett et al., 2008 for a study showing identical clinical outcomes between HFA and Asperger’s). In such a case, the merger of the two conditions would better reflect the true nature of the conditions as a variations within a single spectrum. However, another possibility is that the DSM-IV criteria is simply wrong. Under that hypothesis, research has failed to find utility for this classification because of an erroneous diagnostic criteria which led to the incorrect classification of people. Some support for this later position was provided by the research team of Fred Volkmar at the Yale University Child Study Center (Klin et al., 2005). They proposed a new diagnostic criteria for Asperger’s disorder that was more inline Asperger’s original 1944 observation of his cases. Under this system HFA and Asperger’s would differ on 3 specific domains:



1. Nature of social impairments: HFA would be characterized by self-isolation and lack of interest while Aspeger’s would be characterized by interest in social relations and ’seeking others’ (social motivation) but in a socially insensitive or atypical manner.



2. Nature of language impairment: HFA would be characterized by delayed, echolalic and stereotyped language while Asperger’s would be characterized by adequate or precocious language but with difficulties in the use of language (pragmatics).



3. In addition, the Asperger’s diagnosis would include one-sided verbosity and the presence of factual, circumscribed interest that interferes with the person’s functioning (e.g., education and social interactions).



Interestingly, some research has shown differences between HFA and Asperger’s when using the Klin criteria above (see for example Mazefsky and Oswald. 2006). Thus, it is possible that the lack of clinical utility of the current DSM-IV diagnostic distinction between HFA and Asperger’s is due to a lack of validity of the DSM-IV criteria rather than the lack of validity of the constructs of HFA and Asperger’s as two distinct syndromes. So why did the DSM-V committee recommend the merger of these two conditions rather than a redefinition of the Asperger’s criteria? It appears that their interpretation of the totality of the data is that there is no sufficient evidence to validate these two conditions as two separate syndromes regardless of diagnostic criteria used, and that the differences observed are better accounted for by differences in language, IQ, and severity, rather than features of the disorder.



From the DSM-V committee:



Differentiation of autism spectrum disorder from typical development and other “nonspectrum” disorders is done reliably and with validity; while distinctions among disorders have been found to be inconsistent over time, variable across sites and often associated with severity, language level or intelligence rather than features of the disorder.



Update: I just noticed that Dr. Mohammad Ghaziuddin, an accomplished autism and Asperger’s researcher and clinician working at the University of Michigan, just published an opinion piece on the Journal of Autism and Developmental Disorders arguing for a redefinition of Asperger’s rather than its merger with Autism. He argues that the current DSM-IV definition is incorrect and a new updated definition (following the Klin’s criteria outlined above) would be more accurate and clinically useful. He states:



…what is needed is a revision of its criteria taking into account, its quality of social impairment (active but oddrather than aloof and passive); idiosyncratic interests (oftensophisticated and intellectual); communication style (oftenpedantic and verbose); and age of onset/emergence of symptoms (often around 7–8 years). In addition, effortsshould continue to establish its validity not only from autism but also from other conditions.



References:

ResearchBlogging.org



Klin, A., Pauls, D., Schultz, R., & Volkmar, F. (2005). Three Diagnostic Approaches to Asperger Syndrome: Implications for Research Journal of Autism and Developmental Disorders, 35 (2), 221-234 DOI: 10.1007/s10803-004-2001-y



Bennett, T., Szatmari, P., Bryson, S., Volden, J., Zwaigenbaum, L., Vaccarella, L., et al. (2008). Differentiating Autism and Asperger Syndrome on the Basis of Language Delay or Impairment. Journal of Autism and Developmental Disorders, 38(4), 616-625. doi: 10.1007/s10803-007-0428-7

11 Year Old Autistic Boy Charged with Felony Assault. by Elizabeth McBreen

One day in October of last year began as a normal school day for Zakhquery Price of Fort Smith, Arkansas. Well, a normal school day for a child with autism who attends school in a district that is completely unequipped to deal with his disability.


By the end of that day, the eleven year old autistic boy had been arrested, placed in a cell with typical juvenile offenders and charged with felony assault. Price has no prior record of violence, and although he has been diagnosed as autistic, he has never received proper treatment or therapies. And this was not the first time the police had been called to deal with the boy. Carole Reynolds, Price’s grandmother says that he has become the victim of Arkansas’s “good old boys system”. And she is tired of keeping quiet.

When Price began having problems while interacting with peers in typical classrooms in first grade, the district suggested he be placed in a program for behavioral problems. Reynolds says that when Price’s behavior deteriorated further as a result of the new placement, the family removed him from the program. Since then, she says the district has been trying to oust Price by any means possible. In the meantime, Price has not progressed passed a first grade level.

In March of 2007, Price had a meltdown in school. Without parental consent, the boy was taken to Vista Health, an Arkansas psychiatric hospital. For the next two and a half years, says Reynolds, her grandson was moved from one mental institution to another. Six months after Price arrived at Vista, his Medicaid funding ran out. The court decided that he would be moved to a day program which soon “gave up” on Price, according to Reynolds. Price was then moved to Mill Creek of Arkansas which provides services for emotionally disturbed and developmentally disabled children. When Medicaid funding again ran dry, Price was moved to Habberton House, a residential treatment facility.

Reynolds was shocked to receive a telephone call from a Medicaid office last spring. The caller inquired about how Price was doing at Habberton House. “I told them that he had never been worse. He was released in May of 2009,” says Reynolds. “From the age of eight to ten and a half, he wasn’t in a normal classroom. He doesn’t know how to behave.” It was just two weeks after Price was taken to Vista Health in March of 2007, that his family received results of an evaluation he had undergone. The results stated that Price was autistic. But Reynolds says that every institution and program he has been in since has ignored his diagnosis. “They just have no idea about autism around here,” says Reynolds.

In an effort to start this school year out on the right foot, Price’s mother requested an Individualized Education Program meeting (IEP) this summer. The request was denied. The district said that the IEP would be conducted once the school year began. Price was placed in a typical classroom of 28 students. “Two and a half months after the school year began, he had already been suspended 14 times and they had called the police on him,” says Reynolds. The family was granted a temporary IEP in mid-October. At the meeting, it was decided that Price would be moved to a classroom for emotionally disturbed children. The family believed that was the safest place for Price. In that classroom, he would have a quiet corner of his own. He would go there when he got upset.

On October 30th, when the class turned to Spelling, a known trigger for Price, he began to act out. “Instead of leaving him alone, the teacher said that Zakh could sit by her. You can’t do that, you have to just leave him alone, but she didn’t,” says Reynolds. “So he trashed the room. And he’ll admit that he did it.” Moments later, Reynolds says that the teacher, now joined by the principal of the school, cornered Zakh in his quiet space and attempted to restrain him. Becoming frustrated, he began to push his way out. He kicked the principal and pushed his teacher into a bookcase.

Twenty-five minutes after Price’s meltdown began, the school called the police. Then they called Price’s family, who lives five minutes away from the school. Price was arrested and charged with felony assault, even though, says Reynolds, both teacher and principal did not sustain any long-term injuries and did not miss any school after the incident. Since the case is now in due process, a representative for the school district refused to answer any questions about Price’s case. The lawyer representing the Beard Elementary also refused to comment on the case.

Now Price awaits his court date, which has been pushed from January to April, with no explanation from the court. Price’s therapist made a request for homebound schooling for the duration of the school year. Reynolds says that he has been approved for just four hours a week with an in-home teacher. He receives 30 minutes of speech therapy a week.

Reynolds says that she was advised by several people not to rock the boat by going public about Price’s case, but after watching her grandson suffer and regress for three years, she thought “I’ve got nothing to lose.” Reynolds says that as a result of her talking to the media, the public defender that was representing Price became angry. “I felt forced to hire a private attorney.” Because the family could not afford an attorney on its own, Reynolds says that their community came together and helped raise the needed funds for a retainer.

Theresa Caldwell is the lawyer who took on Price’s case. She says that the actions of the school district were extreme. Caldwell is new to the case and has not yet thoroughly studied the case or spoken to the district, but she says, “It’s as if the district is trying to disrupt the child’s placement. It looks like they do not want him there.” Caldwell also says that it appears that Price’s teacher may have purposely escalated the situation. Caldwell will have a chance to speak with the teacher and principal in February. In the meantime, Reynolds is speaking out on behalf her grandson. Although she fears he is the victim of corrupt system, she continues to hope that she can somehow offer him a safe and fulfilling future.

New Doctor but I am Still a Skeptic

Griffin went to a new doctor today who is a Dr. Andrew Wakefield fan and I had my skeptic hat on but listened to her anyway. I am willing to do all the testing but as far as the radical diets I am here to say that I am not for it for several reasons.

 #1 The days of believing Dr. Wakefield are over....long over! I stopped blaming myself for vaccinating my child years ago and believe that there is a very good reason for doing it and that is to keep my child alive and free from disease! I do not care to have my child die from a simple case of the measles and I don't believe that that is far fetched either, the disease is still around and very real.

#2 I believe that my child deserves to find some comfort in life and if that is in his diet than so be it. If the tests show that he does not have any allergies then I do not believe that I should cut out any foods. There are so many things in this world that he has to cope with and adjust to that it is not fair that his diet is drastically changed and taken away from him. Sure I can adjust his sugar intake which is very low as it is already but to take away all his comfort foods is not fair to him.

#3 My pocketbook will not bear the weight of all fresh foods, I can barely afford to buy the cheap foods that I buy now at the discount grocery store where I can afford to shop. Besides, Griffin will not eat only fresh foods, he had rather starve than to eat vegetables and fresh fruits. He prefers carbs like many autistic kiddos and some protiens but totally dislikes vegies. He takes vitamins and his other doctors have told me that that is acceptable until the day comes that he can transition to vegies and fruits. I plan to get his new O.T. to help me get him to try new foods gradually.

I do plan to make a few changes but only a few mind you and they will be affordable ones at that. Like smoothies with ground flax seed for fiber. He will drink those and he definitely needs the fiber. Constipation has always been a problem but I have always just given him apple juice for it and it works but it is a good time to incorporate something new.

I appreciate that the doctor took two hours and was very thorough with his history up to the present but at the same time I must be realistic and I am not changing my mind about Andrew Wakefield MD or about my choices in the past. We will do the heavy metal testing of the hair, testing the stool, and the allergy testing and then I will remain a skeptic after that and choose carefully where it goes after that. Temple Grandin mentioned that refined sugar was one of the main things to take an autistic child off of in order to quiet their minds and that is sound advice to me so I am gradually going to do so and find substitutes. I think that he can live with that.

I slept last night without the aid of medication which is good news but tonight I discovered that it is not that good because I am feeling depressed and that is why. Everyone keeps telling me that I look tired and yes I am. My meds need to be tweaked because I have cycled down and that is why I am sleeping so easily, like I could fall asleep right now and it is only 7:00 so that is not a good thing. So glad that I am going to see my doctor deity on Monday......so it damn well better not be snowing on Monday!!!!!!!

Move to Merge Asperger's, Autism in Diagnostic Manual Stirs Debate. By Elizabeth Landau, CNN

(CNN) -- For Mary Calhoun Brown, the term "Asperger's" is crucial to conveying to schools that although her 15-year-old son has had social difficulties, he has a near-genius IQ and great speaking ability.
"If I call it 'autism,' that's going to raise a lot of red flags for people who don't know him," said Brown, author of the novel about autism "There Are No Words."

Both Brown and her son William are opposed to new guidelines being put forth by the American Psychiatric Association that would make Asperger's syndrome part of the autism spectrum disorders rather than a separate diagnosis. In the current edition of the Diagnostic and Statistical Manual, which helps mental health professionals identify specific conditions, it is not listed under autism.

The revisions are being considered for the DSM's fifth edition, due in 2013. They were made public Wednesday at DSM5.org, and are available for public comment until April 20.

The clustering of Asperger's and other developmental conditions with autism has generated a flurry of comments and concerns among people with the conditions, as well as parents.

The Asperger's Association of New England, a nonprofit organization with more than 3,000 members, has written a letter to the APA committee in charge of revising autism diagnoses explaining that Asperger's should remain separate, said Dania Jekel, the association's executive director. The group is currently trying to mobilize other organizations to speak out and do what they can to see that the diagnosis remains in the DSM V.
"This is their identity, which is really being taken away," Jekel said. "If everybody's sort of lumped together, we're going to lose that."
Brown cited rumors that such intellectual icons as Thomas Jefferson and Albert Einstein may have had Asperger's, which fuel the positive image that has been cultivated in reference to the condition.

"Autism tends to be defined as a deficit, and people with Asperger's see themselves as having an advantage in life," said Eileen Parker, 46, of Minneapolis, Minnesota, who has Asperger's. That is why the community is split over the DSM issue, she said. She personally agrees that Asperger's belongs under autism for scientific reasons.

Dr. Charles Raison, psychiatrist at Emory University, acknowledged that "autism" is a "frightening word," and that moving Asperger's under autism may pathologize it more. Still, it is more accurate to call it a form of autism, he said.
"It may be there that there's some political fallout, but from a scientific point of view I think the use of these spectrum ideas is much closer to the underlying biology," he said.

Asperger's syndrome, which affects about two out of every 10,000 children, is characterized by poor social skills, physical clumsiness, and narrowly focused interests, according to the National Institutes of Health.

William's main problems still lie in relating to other people -- he has trouble picking up on nonverbal communication, with gauging the strength of a relationship and with asking people to do things.

"I still don't know how people work, and that's one of the things I'm interested in," he said. "I don't think I'll ever get over that."

Part of the rationale is that the term Asperger's has become too vague, and may currently prevent some children from receiving the assistance they need at schools that offer "autism" services and don't necessarily include them, said Catherine Lord, director of the University of Michigan Autism and Communication Disorders Center, who is on the American Psychiatric Association committee looking at autism.

But William, who received his diagnosis at age 5, is worried about the opposite.
"I believe that if we take away 'Asperger's syndrome,' people will not know as easily what this child needs to excel in school and in life," he said. "For instance, someone who has high-functioning autism may have a learning disability, but someone with Asperger's may not."
Jekel is also concerned that people with Asperger's would be perceived as having "mild autism" and not qualify for appropriate support.

Parker, who runs the blog Inside the Autism Experience, only found out her condition had the name Asperger's four years ago, and the diagnosis opened her up to a world of helpful therapies she didn't know existed. But she said the symptoms resemble autism characteristics, and that the conditions are part of the same continuum.

William said he would feel comfortable calling himself a "high-functioning autistic" because technically Asperger's is so similar, and he himself feels so far along -- he is an accomplished student debater and will attend Harvard Summer School -- that his parents sometimes tell him he may not receive the same diagnosis today. His concern about the Asperger's designation in the DSM is mostly in relation to those who need additional help, and for parents, he said.

"I don't think it would be in the best interest of the parents with children who are just being diagnosed, and also for kids who really do need what people with Asperger's need instead of what people with autism need," he said.

Asperger's Officially Placed Inside Autism Spectrum by Jon Hamilton

Asperger's syndrome is really just a form of autism and does not merit a separate diagnosis, according to a panel of researchers assembled by the American Psychiatric Association.
Even though many researchers already refer to Asperger's as high-functioning autism, it hasn't been listed under the autism category in the official diagnostic guide of mental disorders, called the Diagnostic and Statistical Manual, or DSM. The DSM serves as a guide for mental health professionals and government agencies.
But a new draft fifth edition released Wednesday moves Asperger's officially into the autism category, provoking a wide range of responses among people with Asperger's — some of whom say they do not want to be labeled as autistic.
Redefining A Disorder
Instead of including a diagnostic category for Asperger's, the DSM-V draft includes traits associated with Asperger's, such as difficulty with social interactions and limited, repetitive behaviors, in a broad category called autism spectrum disorder.

Reworking The Book Of Mental Disorders

When clinicians see a patient with mental health issues, part of their job is to determine if the patient is experiencing temporary emotional struggles or if the patient has an illness. To do this, doctors rely on the bible of psychiatry, a book called the Diagnostic and Statistical Manual of Mental Disorder. The DSM lists all the mental disorders recognized by the American Psychiatric Association.
The book is also used by insurance companies to decide which treatments they'll pay for, and by courts to help determine insanity or other mental conditions.
The APA is releasing a new draft of the DSM Wednesday, the first major revision since 1994. This latest version of the book, the DSM-V, proposes some significant changes to the following disorders:

Bipolar Disorder

"Cutting"

Binge Eating

"The intent is to try to make the diagnosis of autism clearer and to better reflect the science," says Catherine Lord, director of the University of Michigan Autism and Communication Disorders Center. Lord is part of the group that decided to consolidate autism-related categories, including Asperger's.
But the change is going to be hard for some people with Asperger's, says Michael John Carley, executive director of the Global and Regional Asperger Syndrome Partnership in New York and author of Asperger's From the Inside Out. "I personally am probably going to have a very hard time calling myself autistic," says Carley, who was diagnosed with Asperger's years ago.
Many people with Asperger's take pride in a diagnosis that probably describes some major historical figures, including Albert Einstein and Thomas Edison, Carley says. Under the new system, those people would represent just one extreme of a spectrum. On the other extreme is "somebody who might have to wear adult diapers and maybe a head-restraining device. This is very hard for us to swallow," he says.
Yet Carley says he agrees with the decision to fold Asperger's into the autism spectrum disorder diagnosis.
Blurred Lines From The Start
Since 1994, when the fourth edition of the DSM added the Asperger's category, health care professionals have struggled to find a way to separate Asperger's from autism, Carley says. "Every time they've tried to draw that line it's been proven false in practice," he says.
Right now, the diagnosis often hinges on a person's language skills. But that's pretty subjective and can change as a child grows up, researchers say. "The categories are just not used by clinicians in a reliable fashion," Lord says. A single category for autism spectrum disorder will let clinicians stop agonizing over which diagnostic category to put someone in and focus on their specific difficulties with communication, or social interaction, or information processing, he says.
The change makes a lot of sense, says Roy Richard Grinker, an anthropologist at George Washington University who has studied autism in various cultures. He is also the author of Unstrange Minds, a book about his daughter, who has autism. "As somebody who has a child with a diagnosis of autism, I want to be able to turn to the official criteria and see a description that sounds like my child," Grinker says. "Right now my child sounds like three or four different disorders."
When his daughter was 4, she met the criteria for classic autism, Grinker says. Now that she's in high school, she would probably be considered Asperger's or maybe just a quirky kid, he says.
Eliminating the Asperger's diagnosis won't mean that people in that category will lose access to services, Grinker says. That's because "almost anybody with an Asperger's diagnosis also could qualify for what is called autistic disorder," he says, adding that the change could make it easier for some parents to get help for a child with Asperger's.
Right now, states including California provide services to children with autism but not those with Asperger's, Grinker says. "So removing Asperger's really removes what is a false barrier to parents getting care for their kids."

The Woman Who Thinks Like a Cow. The Story of Temple Grandin

THIS IS A MUST SEE!!!!! IT IS IN 5 PARTS ON YOUTUBE. PLEASE WATCH!!!!!! JUST CLICK ON THE LINK ABOVE AND IT WILL TAKE YOU THERE.

The False Prophets of Autism. by Lisa Belkin

When Dr. Andrew Wakefield — the British doctor who linked vaccines to autism — was found to be “dishonest,” “irresponsible” and acting “contrary to the clinical interests” of a child by a medical-misconduct panel last week, and when the respected medical journal The Lancet officially retracted its publication of Wakefield’s 1998 study earlier today, those were but the most recent controversial moments in the medical mystery that is autism.
For more than a decade, parents who believed Wakefield’s claims have accused doubters of playing roulette with the health of their children. But those who questioned his views have charged that his results are not replicable, that he has financial conflicts of interest and that he is spreading fear for his own gain.
Liane Carter has read all the news reports out of Britain with their mix of predictions that this is the end of Wakefield’s career as a researcher (he now runs an autism clinic in Austin). But some parents promise to follow him anywhere. To Carter, it all sounds numbingly familiar. In a guest blog today, she describes her frustration with those who prey on the desperation of parents with unfounded promises of an answer. Time spent on false hope, she writes, is time wasted on finding an actual cure.

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CURE DU JOUR
By LIANE KUPFERBERG CARTER

Two years ago, Jenny McCarthy, the actress turned activist, said she found the cure for her son’s autism. Since then, I’ve watched McCarthy and her autism advocacy group, Generation Rescue, lead an ideological, unscientific crusade against childhood vaccines.
Oprah has signed a deal to sponsor McCarthy in her very own talk show. I’ve listened to McCarthy’s announcements that her son Evan “is no longer in the world of autism.” He is, she says, “recovered.” It makes me cringe.
I don’t know what “recovered” looks like. I’ve heard people throw this term around, but I’ve yet to meet a child who is “cured” of autism. You could say that any child receiving therapy is “in recovery.” I’ve seen many kids who have made good progress in a therapeutic setting, my own 17-year-old son included. But most of these children still are and will always be autistic.
I’ve watched in anger as McCarthy plugs her books to Diane Sawyer, Larry King and People magazine, telling the world that the gluten/casein-free diet or biomedical treatments for yeast and metal toxicity have fixed her child. She draws the analogy that alternative biomedical treatments for autism are like chemotherapy for cancer: some patients benefit, many don’t.
True enough. But there are far more of us in the “don’t” category. Behavioral therapy still remains the gold standard in treating autism. When our son was not yet 2, we immersed him in all the mainstream treatments: applied behavioral analysis, speech therapy, occupational and physical therapy.
But for good measure, we also dipped our toes in the biomedical pool. Our only rule: whatever we tried must be safe, pain-free and noninvasive. We tried the gluten/casein-free diet and probiotics and spent our savings on cranial sacral therapy, auditory integration therapy, homeopathy and food-sensitivity testing.
Those were the years that the Autism Research Institute first launched DAN (Defeat Autism Now), a protocol of biomedical interventions, so we consulted the local DAN doctor too. He charged thousands of dollars, most of it not covered by insurance, yet his waiting room was packed. Over the course of a year, he offered one cure du jour after another, quick to take advantage of our desperation. Finally, he insisted our 4-year-old had stealth birus. He urged us to give him a cytotoxic drug called ganciclovir then being used for AIDS patients and other severely immuno-compromised people.
“How many children have you treated with this?” I asked.
“I’m treating one patient right now,” he said.
That’s when we fled. In the years since, we’ve watched so-called miracle cures come and go: secretin, a pancreatic enzyme; intravenous gamma globulin; the “metabolic enhancer” DMG; hyperbaric chamber therapy; mercury chelation; stem cells from China; the Lupron protocol, a form of chemical castration. All junk science.
There’s nothing wrong with reasonable hope. Parents need to cling to something. I still fervently believe that early intervention is critical. With therapy, 40 to 50 percent of the children who are diagnosed at age 3 gain enough skills to be mainstreamed by 6, though many continue to need special educational and social supports. A small but provocative study released at IMFAR (International Meeting for Autism Research) suggests that 10 percent of children with autism improve sufficiently by age 9 so that they no longer meet diagnostic criteria for the disorder. Significantly, most of these formerly autistic kids got intensive, long-term behavioral treatment soon after diagnosis.
It’s distressing and hurtful to hear McCarthy say her son is cured because she “was willing to do what it took.” McCarthy, who describes herself as one of a tribe of “warrior moms,” seems to imply that if our kids are unrecovered, it’s because we didn’t do the diet right, weren’t willing to let doctors inject our children with unproven drugs or somehow just didn’t love our children enough.
I’ve heard McCarthy say on national TV, “Evan is my science.” I’m sorry, one little boy is not “science.” Warm and fuzzy anecdotes don’t do it for me. Give me hard science any day, with its double blind studies and rigorous peer review.
I don’t doubt that McCarthy loves her son. But the vast majority of our kids are not going to be cured. It’s time for the media to stop giving airtime to celebrities with no medical credentials who peddle unrealistic hopes to families dealing with a devastating diagnosis.

2009: The Year Singer Spoke Up. By Arthur Allen

Autistics need the same things we all need, only more so: I mean love, and the special care that emanates from that love. Though they don’t perhaps realize it, they also need truth, so that love isn’t directed where it does no good. With this column I’d like to honor two people who this year have shown special love for autistic kids and for the truth that serves them.
You couldn’t find two American women more different than these two: Alison Singer and Mary Mathis. Singer, a former TV producer who lives in Scarsdale, N.Y., is 43, well to do, and moves comfortably between the worlds of science and policy. She has a 12-year-old daughter, Jodie, with autism. Mathis, 62, grew up chopping cotton and packing frozen okra in Montezuma, Ga., before moving to Niagara Falls, where she now shares a cramped half-duplex with three autistic grandchildren, ages 2 to 5. 
Singer, you may recall, made the New York Times and gained the enmity of the Age of Autism crowd last January for leaving Autism Speaks, which she had represented on a committee that’s setting priorities for autism research. She decided she could no longer speak for a group that wanted more government money to be spent investigating a fruitless theory—namely, that vaccines cause autism. 
It wasn’t that Singer pooh-poohed the idea from the beginning, she told me. “I think families were right to ask that the vaccine studies be done. And our public health community responded. We now have dozens of studies that have looked at vaccines and vaccine components, all of which have yielded the same answer, that no, vaccines do not cause autism.” More money, she felt, would be better spent looking into relevant causes and promising therapies.
Vaccines, of course, are much more than just one of the many theories about what might trigger autism. Immunization is a touchstone for a series of political and health beliefs that divide parents of autistics. Many parents who blame vaccines seem to flock to unproven therapies that claim to cure the damage vaccines caused. That profoundly bothers Singer. “It scares me to see children with autism being put at risk by therapies that have no evidence of efficacy and can do real harm, especially when they divert time and energy away from proven therapies like Applied Behavior Analysis.”
Proof of efficacy is hard to obtain; the placebo effect operates in almost all clinical trials involving autism therapies. For example, when the pig hormone secretin, miracle cure of the late 1990s, was given its day in scientific court, doctors who conducted clinical trials testing the substance found that all patients seemed to improve—the ones who got saltwater just the same as those injected with the actual hormone. “I think this is because we love our kids so much and want them to improve,” Singer says. “This is why it’s important to have rigorous, double blind, placebo-controlled testing of various interventions.”
That hasn’t been the case with chelation, IVIG, vitamin B12, hyperbaric oxygen chambers or any of the other, constantly proliferating therapeutic approaches that are championed by some parents and some alternative therapists.
In April, Singer joined with Karen and Eric London, previously of the National Alliance for Autism Research, to start the Autism Science Foundation, a research funding group. Taking this step meant Singer had to undergo the slings and arrows of unhappy parents. Starting a charity from scratch in the Madoff era is no cheap trick, but Singer says it’s been refreshing to have a clear message and a clear point of view. “I no longer have to worry about saying something that might upset a donor,” she told me. “Our donors know what we stand for, and they are extremely supportive.
“Autism Speaks likes to call itself a big tent, where all views are welcome. But not all opinions are created equal; some are backed by science and some are not. At the Autism Science Foundation we are a smaller tent, where science is welcome. Our tent is growing every day.”
I chose to write about Mary Mathis with Alison Singer because Mathis epitomizes the great love that parents feel for their children by the way she cares for her three small grandsons in the most difficult of circumstances.
Mathis’ daughter, who suffers from depression, had three boys by different fathers before she fled her home, unable to handle taking care of Damien, now 5, DaShawn, 4, and Javier, 2, Mathis says. Damien has been diagnosed with pervasive development disorder and the other two children are also on the spectrum.
Mary Mathis, who is separated from her husband, has had open-heart surgery and four back surgeries in recent years. She gets by with help from her own disability and workers’ compensation payments, and with Social Security payments for the boys.  It comes to less than $2,800 a month—$500 of that goes to the rent—but she isn’t complaining. To the contrary, she’s very appreciative of the doctors, nuns, social workers and volunteers who support her devotion to the boys.
“Taking care of these boys is harder than picking Georgia cotton, and picking cotton was hard!” she tells me during a telephone chat. “But I love my grandchildren and they’re mine. They didn’t ask to be conceived, they didn’t ask for what they got. And I’m going to do whatever I can to make their lives a little easier, to make them dress nice, keep them clean, make sure they’re healthy, they get all their shots, they get their education. Autistic children don’t educate easy.”
It’s been a hard education for Mathis, too, but she has taken readily to the advice offered by sympathetic clinicians and social workers. “Before he turned 2, the oldest one started speaking gibberish. I’d never heard of autism and I didn’t know what was going on,” she recalls. “He stopped talking, he started screaming, kicking, he stopped eating. I thought he was having seizures and took him to the doctor. Right away the doctor knew what was going on.”
Mathis lives alone with the boys. The oldest ones panicked at the slightest variation in their routine. She couldn’t even take them shopping—they would fall on the ground and scream. She was eventually able to leave the boys for brief periods with her son, whom they came to trust.
Before long, the Niagara County early intervention program provided a speech therapist, Bernadette Boland, to help with Damien, and then with the other boys. “I told Miss Bernadette, ‘If you can get him back talking I’ll love you forever.’” The oldest boys are speaking now, Mathis says. And the experts have helped give her tools she uses to work with the children.
The first snows have fallen in Niagara Falls, and the children naturally want to play outside, but there’s no good place for them. Hence Mathis’ next project: to get a house where they can have a fenced yard to play in, as well as rooms of their own where they can bounce around.
“I’ve got screws in my back and I need new teeth, but nothing keeps me from taking care of these boys,” she says. “I’ve borrowed hundreds of dollars from my friends to get the kids all the tests they need.  They are not going to into a foster home.”
Though her work extends to research affecting the care of all autistics, not just her own, Singer is linked to Mathis by the gratitude she feels for the professionals who have cared for her own child. “Jodie has learned some functional, communicative speech and can make her wants and needs known,” her mother says. “That’s really a breakthrough. As her speech has improved, so have some of her most difficult behaviors.
“We owe so much to the amazing teachers and therapists who work with her.”

So Drunk In The Morning

No, I am not literally drunk in the morning, not from booze at least but I do act exactly as if I were! This is my example, and it's not the first time that it has happened. I took my Tranxene at 8:00 and prepared for bed, now this is the only med that I take for sleep and only taking 1 is a very low dose. I slept great until 1:00a.m. and at that time I actually considered staying up and studying until I had to get Griffin up 6:00 but instead decided to go back to sleep until 5:00. Now I was feeling quite lucid and great even energetic but thought that maybe my busy day ahead might cause me to be sleepy later if I didn't get enough sleep.

I did not wake at 5:00, I did not get Griffin up at 6:00 and when I did wake at 7:00 (by Griffin) I was so "drunk" that I couldn't function: my speech was slurred, I was bumping into walls, couldn't keep my eyes open, and was saying strange things to Griffin that I couldn't stop. I swear that I felt just like I had back in the day when I used to get drunk doing and saying stupid stuff. I had had NO wine the night before so that was not a factor in this mysterious equation. I had no choice but to go back to sleep this time on the couch so that if anything were to happen unusual while Griffin was here in the living room on the computer I could hear him.

When I woke I felt soooooo much better and felt that I had control of myself and then I took my morning meds that help me to wake up plus some yummy coffee too. I must confess that I took two of my Provigil in order to feel coherent enough to drive Griffin to school. By the time I was driving I was fine.

All I know is that I am sure glad that I get to go see my "doctor deity" on Monday so that he can figure out what the heck is going on and why I was fine at 1:00 a.m. but not later in the morning. So tonight I will not take anything and once again, just as when I had this same problem before with a different med, I will probably not get any if much sleep at all. That's just the Bipolar insomniac that I am!

Tonight we have more snow and there will, once again, be NO school tomorrow! I swear there will be no spring break and that he will probably end up going to school on Saturdays for awhile. As long as we don't lose our power I am fine with it because we have lots of food. And Griffin gets such a thrill playing in the snow.

Still Snow. Still at Home. Should I Go Out on the Streets?

 

Here we are again stuck inside with lots of snow but we did actually go out and brave the snowy streets yesterday. We had to go to the store for laundry detergent and some food. Griffin had been awarded a certificate for Pizza Hut personal pan pizza for his reading program so he wanted that. It was tricky going on the snowy secondary roads but we made it okay. I kept reminding myself that I used to drive in a heck of a lot more snow in Alaska for years but I also had studs on my tires which made a huge difference. 

Griffin had to roll in the snow every time we went out to take Abby for a walk which was fine because he had two layers of everything on. I try to stay busy cleaning while Griffin is on the computer or if I can I read, that is if he doesn't have audio on the computer or the TV on. I am the kind of person who has to have silence when I read or I simply don't retain it, it is hard enough to retain anyhow as it is......my memory is NOT very good. I need to be brave and take an exam for the same class that I got extended: my International Relations class. I am learning a lot which is great but still have anxiety about taking the exams and writing the papers. I should just worry about just passing the class instead of stressing over making an A or a B in it.

Griffin is due to have speech therapy today so I guess that I will try again to go out because it is so important for him to have speech. As long as the temperature doesn't drop and the wet roads don't freeze then I guess that we will be okay. I have all my fingers crossed and giving thanks for our safety because I believe that if you want more of something then you must first be grateful for it and not take it for granted. We have a Volvo and it is a nice and heavy car which helps and it has the anti-lock breaking system which helps and it is the best car I have ever had, very safe and reliable. So grateful for that too.

I don't know if I want to go out or not, as I look at the thoroughly wet streets it scares me to think of the 37 degree temperature that we have now dropping down to 32 degrees about the time it is to come home at 5:00. I feel like a chicken but maybe it is the wise thing to do (?????)

My friend Melissa asked me if I was going to take Griffin off of his meds for his bipolar symptoms and that is an emphatic NO! We are scheduled to see the pediatrician in a couple of weeks and I am going to ask him if the Abilify is the best choice in meds for him. It works well but there is the issue of it potentially changing his blood sugar levels. I don't know what we will decide as far as the ADHD goes because that is an ever present issue to contend with on a daily basis. Will keep you posted.