Single Moms Raising Autistic Sons

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Sunday, February 28, 2010

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.

Saturday, February 20, 2010

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.

Tuesday, February 16, 2010

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.


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

Saturday, February 13, 2010

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.

Friday, February 12, 2010

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 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, 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.

Wednesday, February 10, 2010

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:
"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."

Monday, February 08, 2010

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


Saturday, February 06, 2010

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.


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.

Friday, February 05, 2010

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.”

Thursday, February 04, 2010

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.

Tuesday, February 02, 2010

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 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.