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The Best Asperger's Fact Sheet I've Come Across Thus Far
I came across an Asperger's fact sheet the other day while on the CBC (Canadian Broadcasting Corporation) website. The fact sheet is excellent, and is one of the best I've come across thus far.
The following is extracted from this page on the CBC website:
* Asperger Syndrome is an Autism Spectrum Disorder (ASD) and was first included in the Diagnostic and Statistical Manual (American Psychiatric Association) under the general category of Pervasive Developmental Disorders (PDDs) in 1994. In Vienna, pediatrician Hans Asperger wrote about this cluster of characteristics as early as 1944.
* Although research on the prevalence rate for Asperger Syndrome is ongoing, it is thought that as many as 60 individuals per 10,000 have some form of an Autism Spectrum Disorder. Based on current population statistics for Ontario, this prevalence rate translates to 74,356 individuals in Ontario living with an Autism Spectrum Disorder.
* Asperger Syndrome traits may make it difficult for children to function well in school and for adults to find and keep employment.
* Many individuals with Asperger Syndrome exhibit extensive knowledge of a specific interest and therefore are capable of major accomplishments.
* Although Asperger Syndrome can be first detected in childhood, many individuals are not diagnosed until well into adolescence or adulthood.
* The cause of Asperger Syndrome is not yet established, but a leading theory at this time points to genetic causes. Many individuals diagnosed with Asperger Syndrome identify similar traits in their family members.
* Treatments for people with Asperger Syndrome may include counselling, psycho-education, social skills training, medication, family intervention, occupational therapy, speech-language pathology, special diets, and others.
* Without diagnosis, support and intervention, children, adults and their families struggle to understand their puzzling profile of strengths and deficits.
Common Traits of Individuals with Asperger SyndromeSocial/Communication Traits: * Despite a desire for friends, difficulty in initiating or maintaining close relationships
* Problems reading non-verbal or social cues or understanding/using social rules
* Very socially naïve and as a result are often taken advantage of, rejected, or bullied
* Social contact may be directed by them (e.g. play is “on their terms” or not at all)
* Poor (or intense) eye contact, atypical use of gestures and flat or inappropriate facial expressions
* One-sided conversations, and little ability for “small talk”
* May appear overly shy or overly extroverted, but inappropriately so
* Unaware of others’ thoughts, feelings or perceptions resulting in inadvertently appearing rude or inconsiderate
* Literal interpretation of communication from others
* Avoidant of social contact or events, and may experience heightened anxiety in social situations
* Language is learned and used in "chunks" (e.g., phrases, dialogue from TV shows, etc.)
* Communication is used for delivering information or requesting, not as a way of interacting socially
Behavioural Traits: * May respond poorly to changes, sensory stimuli, transitions, lack of structure, and restrictions
* Repetitive movements (e.g., jumping, rocking, pacing) and speech (i.e., talking about favourite topics, interest)
* Rigid, inflexible and rule-bound behaviour
* Inappropriate behaviour given the social situation (e.g., speaking too loud in place of worship)
* Exaggerated emotional response to situations (e.g., tantrums when asked to something that they don’t want to do)
* Superior ability to focus on favourite activity or area of interest (e.g., spends hours mastering video game to the exclusion of other pastimes)
Cognitive Traits: * Average to superior intelligence
* Detail oriented approach to tasks which may result in missing the “bigger picture”
* May have associated learning disabilities (e.g., non-verbal learning disability)
* Often have high verbal scores in a cognitive assessment, and low performance scores
* Difficulty seeing “parts-to-whole” and “whole-to-parts” relationships
* Prefer technical/factual information over abstract
Associated Challenges: * Anxiety and depression
* Attentional difficulties (e.g., shifting attention; attending to unimportant stimuli)
* Tics or Tourette Syndrome
* Gross and fine motor deficits
* Poor organizational skills (e.g., time management and planning, partializing tasks)
From now on, whenever people ask about Asperger's, I will show them this fact-sheet.
Our experiences with a Defeat Autism Now! (DAN!) doctor (Part 2)
Last time, I wrote about our experiences seeing a DAN! doctor for the first time. In that post, I mentioned that we went for our follow-up, which I'll talk about today.
The first thing we did was make sure we started the supplements we hadn't yet started. L-Glutamine is the first we we started. Glutathione will be next (we would have started this first, but I was pretty sick this weekend and this is a much more involved process). We also have the Super-Nu Thera coming from Kirkman Labs and will start that on arrival. We also upped my son's Zinc drink to the full dose. We had started low, but after confirmation that his levels are indeed low, we're kicking it up to the recommended dose.
We also ordered a few more supplements based on my son's results:
- Lactobacillus Duo (Hypoallergenic): An inulin-free probiotic that we're giving our son to replace the Pro-Bio Gold. Not only did he seem to get bloating from the Pro-Bio Gold, it's also not complaint with the Specific Carbohydrate Diet. Lactobacillus Duo is. Plus, on his stool analysis, our son's "Lactobacillus species" level came back as "NG", meaning "No Growth". It looks like the Lactobacillus species is an important beneficial bacteria for the GI tract, so this should help build that up.
- Saccharomyces Boulardii: This non-pathogenic yeast also aids the GI tract.
- Methylcobalamin Liquid: This is a Vitamin B12 supplement. He'll get three drops per day.
- Chromium DTF 200: Our son's chromium levels were very low. This will help get them back to normal.
Worth noting is that our son's heavy metals (arsenic, cadmium, lead) were within the normal range. Mercury and thallium were untraceable.
We also received results on a "Comprehensive Food Panel" conducted by Alletess Medical Laboratories. This is an IgG test as opposed to an IgE test (which our son had already gotten with negative results). I was confused by this at first, so here's an explanation I found.
Allergies are defined as specific reactions within the immune system involving an antibody called immunoglobulin E (IgE). Immediate responses such as hives, congestion or swelling typically result from IgE activity. Traditional scratch testing identifies IgE triggers such as pollen or peanuts, which can cause symptoms that range from annoying to lethal.
Very different responses are delayed allergy reactions. If they occur more than two hours after eating a food, they may result from immunoglobulin G (IgG) rather than IgE activity. IgG reactions may cause symptoms such as sleep disturbances, subsequent bed wetting, sinus and ear infections, or crankiness. Blood tests rather than scratch tests are the only way to screen for IgG allergies.
Where immunoglobulins are involved, the word “allergy” can legitimately be used to describe symptoms after exposure. A reaction to gluten or casein sometimes shows up in IgG or IgA blood testing, and is, therefore, referred to as an “allergy.”
Just some background... our oldest daughter has a severe dairy allergy, so our son has never had dairy in his life. He never tested positive for dairy in his allergy testing, but we always kept it out of his diet. When we first received the diagnosis, we went gluten free on top of that (so, basically GF/CF). We gradually started cutting out corn and rice as we moved towards the Specific Carbohydrate Diet before finally going all out on the SCD.
Well, many of these limitations we tried based on hunches or anecdotal information from other ASD kids. Turns out we were pretty much on the money. The IgG test assigns a value of 0 to 3 to each tested food, with 3 being the most severe intolerance. Among the items removed from your diet when going on the SCD, here's how our son scored:
- Barley (2)
- Gluten (3)
- Malt (2)
- Oats (2)
- Rice (2)
- Soybean (3)
- Wheat (3)
Pretty much makes him look like the classic case of a kid who needs the SCD. Those weren't the only 2s and 3s he got though. Here are the rest:
- Asparagus (2)
- Cashew (2)
- Coconut (3)
- Garlic (2)
- Lemon (2)
- Orange (2)
- Pea, Green (3)
- Peanut (2)
- Sesame (3)
- Tomato (2)
- Walnut (2)
- Watermelon (3)
The somewhat devastating one there was coconut. We had begun to really rely on almond flour and coconut as a replacement for all the grains we already removed. Now we need to remove coconut, which is a bummer. We want to avoid giving him too much almond flour (which could lead to a sensitivity development), so we researched other nut flours. Turns out Digestive Wellness has a nice selection. We ordered one of each, sans cashew and walnut (which we also found out he has sensitivities to). You can expect a review of how each tasted!
I could go on and on about the Food Panel (and I've written on the AutismWeb forums looking for more information about the results). I probably will in the future, but for now I just wanted to share our experiences following up with the DAN! doctor.
"Asperger's Syndrome", "Aspergers Syndrome", or "Asperger Syndrome?"
I am confused as to why there are so many different ways of spelling the term Asperger's (my preferred way of spelling the name of the ASD, hence why I used it).I've been wanting to write a similar blog-post to this one for a while now, and was "reminded" to create this post a few minutes ago after seeing that WrongPlanet's Facebook Asperger's group goes by the name "Wrong Planet Asperger Group" which contrasts from the WrongPlanet forum slogan which uses the Asperger's spelling.Asperger's is very often misspelled as assbergers, assburgers, ass burgers (and various other silly spellings), so the various "proper" spelling of the word don't really bother me - I'm simply stumped as to why there are so many ways of referring to this autism spectrum disorder.Whether someone decides to spell it Asperger's, Aspergers or Asperger, doesn't matter much to me as long as people avoid using the dreaded assburgers spelling of the word (I've actually talked to people online who claim that they really thought the term was spelled that way.)
WrongPlanet Forums
I don't use the forum WrongPlanet anymore, but find it to be one of the best Asperger's forums out there at the present. It's not on par with a couple other Asperger's-related boards that I frequent, but the people there are a lot more caring and supportive than they are on some other boards I've been on.
I decided to type this blog-entry up after pondering all of the present Asperger's forums I know of and realizing that WrongPlanet, even though it has its flaws, is still a somewhat decent Asperger's forum to use. One thing I recommend is that you stay clear of the Adult Autism Issues & Random Discussion parts of the board since they are loaded with extremely trivial threads (I created some myself back when I used to frequent the site - pretty much everyone there does.)
Home Secretary allows Gary McKinnon to be extradited to US
Photograph: Sang Tan/AP
Gary McKinnon is wanted in the US for what it calls the biggest military computer hack of all time. Photograph: Sang Tan/AP
Afua Hirsch
guardian.co.uk News Thu 26 Nov 2009 19:53 GMT
• Alan Johnson quashes last-ditch attempt to halt extradition
• Family fear hacker with Asperger's is at serious risk of suicide
Computer hacker Gary McKinnon is at serious risk of suicide, relatives said today, after the home secretary rejected a last-ditch attempt to prevent his extradition to the US.
In a letter today Alan Johnson ordered McKinnon's removal to the US on charges of breaching US military and Nasa computers, despite claims by his lawyers that extradition would make the 43-year old's death "virtually certain".
"The secretary of state is of the firm view that McKinnon's extradition would not be incompatible with his [human] rights", said the letter, dated 26 November. "His extradition to the United States must proceed forthwith".
The decision, described by lawyers as "callous", has prompted new fears about McKinnon's well-being. The letter rejected new expert medical evidence that the health of McKinnon, who has Asperger's syndrome, had deteriorated dramatically since losing his case in the high court in July, and meant that extradition would violate his right to life.
"Gary is at risk of suicide, I'm extremely worried about him", said McKinnon's mother Janis Sharp. "This government is terrified of speaking up to America, and now they are allowing vulnerable people to be pursued for non-violent crime when they should be going after terrorists. Why are they doing this?"
The decision is a final blow for McKinnon, from north London, who was accused in 2002 of using his home computer to hack into 97 US military and Nasa computers, causing damage which the US government claims will cost over $700,000 to repair.
Earlier this year the high court rejected arguments that the extradition would violate McKinnon's rights, after lawyers argued the prospect of up to 60-years' imprisonment in an American 'supermax' jail would cause mental harm because of his Asperger's syndrome and depressive illness.
The home secretary has insisted that he had received assurances from the US government, including a guarantee that McKinnon would be assessed by doctors and psychologists were he transferred to a US jail, and would receive "appropriate medical care and treatment", including counselling and medication, in a letter from the US Department of Justice this February, seen by the court.
Lawyers had also argued that the director of public prosecutions could prosecute McKinnon in the UK, on lesser charges of computer misuse, preventing his extradition. The charges are less serious in the UK than the US, where McKinnon faces a prison sentence of up to 60 years.
"The CPS wanted to prosecute Gary, but they were told from the very top to stand aside and let American take him", said Sharp.
The case comes after sustained controversy over the US Extradition Treaty, designed to speed up extradition between the two countries but which critics insist works in favour of Americans and fails to adequately protect British people from extradition.
McKinnon's legal team had hoped to join his case to the case of Ian Norris, the retired business chief facing extradition to the US to face trial on charges of obstructing justice due to his alleged role in an illegal cartel whose case will be heard in the supreme court on Monday.
Lawyers had argued that McKinnon's case raised similar legal issues, and should have been considered by the 9-strong panel of Supreme Court Justices sitting next week. Attempts to be heard in the supreme court failed however, although McKinnon's legal team said they would be seeking a judicial review of today's decision.
"The Americans have waited three years before requesting Gary's extradition, and the government is too terrified to say no", said Sharp. "What America wants, America gets", Sharp added. "I think it's disgusting".
"This is a hold over from Bush. We thought with Obama it would be different. Now the first person in the world to be extradited to the US for computer misuse is going to be a guy with Asperger's. All our lives have been ruined by this – the heart just sinks."
Autistic Kid Teaches his Mother and has a laugh!
Last night we went to Sterling City to pick up our autistic son for the Thanksgiving holiday. We pick him up at the Dairy Queen there in town.
We have a tradition of running through the drive through and getting him an Oreo Blizzard. Last night was a late night so we had not eaten and we were pretty sure that Ryan had not eaten. Ryan is a teenage boy so even if he has eaten he acts like he hasn't eaten.
Tamra asked Ryan what he wanted.
Ryan reponded with a loud "PSSST!"
Tamra said, "I don't understand PSST, what do you want?"
Again Ryan said "PSST!"
"Do you want a hamburger?"
Again Ryan reponded with a "PSST!" but this time we noticed that his hands were together palm to palm, right hand over the left. Then he said "PSST!" again and flipped his hands left hand over the right this time.
Tamra, who knows some sign language, looked at me and said I don"t know that sign.
I, who have no knowledge of sign language, looked at it and said "well judging from the sound he made I think that it is "hamburger."
I looked up at Ryan's face. He was grinning... oh yeah the "Normals" can be taught!
Our experiences with a Defeat Autism Now! (DAN!) doctor (Part 1)
When we first received our son's PDD-NOS diagnosis, we were completely overwhelmed. We quickly got ABA therapy in order. But once that was in place, we started looking for what else we could do. The more researched, the more we read about this whole other world of autism: the biomedical world and the DAN! (Defeat Autism Now) protocol. Through cutting-edge treatments, parents are trying (with varying degrees of success) many expensive and non-FDA approved treatments for their ASD kids.
When we received our diagnosis, we were warned about biomedical treatments. We were told that the more you read online, the more you would see information about DAN!. We were told it was unproven and expensive, but weren't told to completely ignore it. Rather, we were told to "take it with a grain of salt". Since we wanted to make sure we at least looked into everything for our son, we started researching local DAN! doctors.
In late September, we had our first appointment. We discussed our son's diet (we already switched to gluten & casein free) and she recommended some supplements to begin taking right away. She instructed us to start them all at once, but we opted instead to space them out (so we could see the effects of each). The supplements she gave us were:
- Probiotic (Pro Bio Gold): We only tried this for four days. Our son just generally wasn't acting like himself while on it. We called our DAN! doctor and she said it can make some kids quite gassy and that we should take him off of it. Turns out this probiotic isn't "legal" on the Specific Carbohydrate Diet (which we are on now), so it's probably a good thing we got him off of it quickly. Both of our daughters are taking it with no side effects however.
- Calcium: We started this next and he's still on it.
- Cod Liver Oil: This was next and he's still on this as well.
- Beta glucan: At this point we started doing more research on the remaining supplements because we weren't familiar with them. Beta glucan sounded great in all my research though (it's for the immune system) so this was started next (and he's still on it).
- Zinc drink: This was the last supplement we started before seeing the DAN! doctor for the second time.
Here are the supplements we didn't start before our second visit to the DAN! doctor (which was yesterday):
- L-Glutamine: I had some concerns about this one due to one scathing article on it and some points in an otherwise glowing review from Donna Williams. After speaking with our DAN! doctor I am now much more comfortable.
- Glutathione: I've been very interested in this one—it's the body's most powerful anti-oxidant that helps with detoxifcation. I like that it's natural in the body and that people reported minimal side effects. There are three ways to take it, though. One is a topical cream (what she gave us). I read that this is far less effective than getting it via an IV. Of course, an IV is invasive, expensive, and difficult to schedule. Taking glutathione via IV does have some minor side effects, though. Lastly, you can take it orally, but that also had some side effects associated with it. Our doctor told us that giving it to our son topically should certainly help, though down the line we might want to consider IV. We're going to start this one, but I must say the IV freaks me out. We'll see when the time comes.
- Super Nu-Thera: This is a multi-vitamin. I really don't have a good excuse for waiting on this. We had so many things going on that we kind of forgot to order it (it's shipping now), but we'll start this ASAP.
As I mentioned, we just saw the DAN! doctor for the second time. The reason was to go over results of blood, urine, and fecal testing they did on our son. They wanted to check levels and see what other supplements he would benefit from and what other foods we should remove from his diet. I'll write about those results next time.
Boy with Asperger's Spent Eleven Days in Subways
Someone on the HikiCulture FaceBook group shared a link to this New York Times article about a thirteen-year-old boy from Brooklyn, New York who spent a total of 11 days in a subway station. The boy happened to have Asperger's Syndrome (like myself), which can lead some people to become highly reclusive and anti-social.
I thought I'd share this article since it's not very often that Asperger's is mentioned in major newspapers such as the New York Times. PS. Thanks for the link Theo.
