Category Archives: Autism

My friend and Asperger’s?

A few months back, I was talking to a friend of mine, a new friend, so we were just talking about our lives. He was telling me about how he’s been kinda weird his whole life, about how he’s kinda awkward socially, about how for years his parents and doctors called him A.D.D., about how he was pretty seriously medicated for a long time.

Then when he was around 19 or so, he decided to quit all his meds. He was sick of feeling zoned out all the time. Sure, he focused a little better, and didn’t have moments of mental shut down and reset, as he calls it, but he was so zoned out that he felt like a shadow of himself.

Way back when we talked about this, he said he thought he might have Aspergers’s, because he had started researching what might make him the way he is. Unfortunately, he has no support in this, and no official testing or anything has been done. To me, it seems like his parents are fine with just having a weird kid, but from what he’s told me, they are so impatient with him. It really drives me nuts.

I feel kinda like his big sister. He just turned 21 and still lives at home. He had tried living on his own for awhile, but didn’t have the life skills. It doesn’t help that he’s blind in one eye, and going blind in the other. It’s almost like his family has just written him off, and it drives me crazy.

I saw him yesterday, since he is beginning health and wellness on the same days as me. He had come in for his paperwork and then towards the end of my workout, he was being shown the weight room. I had gotten done and was getting Jayden to go outside and I heard my friend say, “I’m listening, really, I just got a big distracted.” And all my research into autism and Asperger’s came flooding in. I remembered him telling me before about how sometimes when more than one thing was going on, his brain would literally stop for a second until it “reset”. And it seemed like that’s what happened yesterday. I was getting Jayden and talking to Lisa when I heard him tell the other trainer that he was listening.

I know I’m no doctor or any kind of Asperger’s expert just from doing this series, but man, I think it’s something his doctors should look into, don’t you? I’ve read too many stories about adults diagnosed with a form of autism later in life, and it’s such a relief to them, to know why their a little quirky. It just seems like it would help my friend to know. He’s already found ways of coping, like his resetting, but I just wish he’d get some kind of proper diagnosis, instead of everyone just calling him weird. I sense others getting impatient with him sometimes and it makes me want to scream. I love him like a little brother and sometimes I feel like I advocate for him. I kept pushing to get him into wellness with me, since we got on the waiting list at the same time. I know when he’s at Saavi, he is just so happy, and the other clients just love him. People kept asking where my sidekick was haha.

Anyway, I guess I thought this warranted a post. Even if it’s not Asperger’s or another form of autism, doesn’t he deserve some freakin attention, instead of just being labeled weird???

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Autism and storms

I’ve been somewhat grasping at straws for an autism topic today. As I sat here at the computer the wind outside began to howl and moan and I could hear the trees dancing around maniacly as if to a beat I couldn’t hear. Earlier in the day, the air carried the scent of rain on the desert creosote and I could feel moisture on my skin.

About ten minutes ago the rain started. Pelting hard on the aluminum covered parking awnings. I don’t do so well with wind; it is something I’m working on so as not to transfer the fear to Jayden.

I got to thinking, if storms are hard on me, what’s it like for a person with a sensory integration issue like autism? So I went googling and didn’t really find anything clinical, which is fine by me as I’m liking real life experience better anyway.

“”My son, 6, who has never liked the rain and thunder has become increasingly worse the last couple of months. It’s to the point of him getting upset if he even sees a rain cloud. He’s having melt downs in public. It’s so heartbreaking; I can’t protect him from the weather. I know if I tell his dr. – he’s going want to medicate him for anxiety. I feel horrible, but I know he can’t function like this. We’ve been having thunderstorms here everyday for the past three weeks. Today at the Aquarium, three of the pennies he threw in the fountain – he wished for the thunderstorms to stop. I don’t know what to do.” – To read more, click here.

I can’t quite tell with the screen reader, but it sounds like parents of children with autism discussing the anxiety in their children. One of the parents likened the anxiety associated with thunderstorms to her anxiety when she drives over bridges, and I could really relate to that, since I hate bridges.

I just hadn’t thought about storms when it comes to autism, and if it’s hard on me, it’s gotta be worse for these kids. I really like one of the responses from someone about how she’s helping her son imagine that he’s a cheetah hehe! It’s really cute and endearing, and seems to work. Go give the above link a look see to read more.

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What it’s like for the parent of a child with autism

“So don’t throw your euphemisms my way. Recognize that life with my son’s Asperger’s — life anywhere on the autism spectrum — can be at least a periodic nightmare, and respect my struggle enough to allow me to call it that. Know that not everything is bad — I am blessed with many moments of joy with our often adorable and cuddly boy. We share jokes and laugh together; we play and sing and dance; he holds my hand as I sing him to sleep each night, kisses me back and tells me, “I love you, Mommy.” – Anonymous

Wow. I just finished reading this post written by the mother of a boy diagnosed with Asperger’s. The link I posted about yesterday was actually in response to this one.

Again, I am able to get a better understanding, is that the right word? Maybe I should say a better glimpse into autism, by reading real people’s experiences.

This post spoke to me and I hope you go read it. She talks about the judgements she gets from others, even family. And the judgements around a disability are something I am really learning from, through my own situation. I could really relate to her, even though our situations are nothing alike. This was just a really powerful look into what it’s like to be the parent. After doing a lot of reading on adults with autism spectrum disorders, I can only hope that things will even out for them. I wonder if she goes and reads about adults with autism to get a glimpse of what her son’s life could be like. She seems to have some positivity left, and I really hope she holds on to that.

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Pervasive developmental disorder – not otherwise specified (PDD-NOS), also called atypical autism.

So this is the last diagnosis associated with autism, that I’m aware of and one of the hardest to find a clear cut description of. The New York Times reference I was using had links to the others, but not to this one. Strange. So I searched their site for Pervasive developmental disorder – not otherwise specified (PDD-NOS), also called atypical autism. and found a response to a parenting blog that had been written. A woman offered a guest post about her 13 year old son with this diagnosis, and once again, I’m liking the real life experience. I’m going to let her post speak for itself on this one. Apparently she had a book coming out. Go give it a read, as it’s informative and personal.

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Autism service dogs – *Guest Blogger*

When I set out to do this series, I knew I wanted to talk about service dogs for autism. But where to look? Do you ever feel like picking up a book, but you don’t want to take a chance on something new, so you go to your favorite and read it again? That’s kind of how I felt about how to post about this. So, I asked a fellow blogger, one who has first hand experience in not only handling a service dog, but training the dog as well, to write a post about her experiences. This is a woman I have come to know through Blogger and she’s the reason I wanted to know more about autism. She’s pretty incredible, in my opinion, and I really appreciate her writing this! So without further adieu, here’s Katrin!

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I am an autistic adult partnered with a service dog since 2003. In an effort to cover this topic in her monthly posts on autism, Ro asked me if I would guest post for her and I willingly agreed. I regularly write on my own blog By My Side http://asdbymyside.blogspot.com about my adventures with James (my service dog), Niche and Monty (my 2 pet dogs).

First I guess a little background, I have been training dogs since 1996, with that lifestyle as my profession since 2003. Mostly I train people to teach their dogs in agility, obedience, basic manners, behavior modification for agression problems and service work. I was diagnosed with autism when I was 19, at which point James was about 10 months old. I began formally training him as my assistance dog at that time and he graduated to full fledge service work in August 2003. Since then James and I have been partners and he is an invaluable companion to me. On May 1st of this year James will be 8 years old, and so I have begun the search for a new puppy to fill his rather large shoes when it comes time for James to retire. In this post I will talk about the various things James does for me.

One thing I would like to mention is just as any other service or guide dog, service dogs for those with autism must be task trained to mitigate the person’s disability. The Department of Justice has ruled on many occasions that dogs solely for emotional support, well being or companionship are not service dogs. So just like any other task trained service dog, James has behaviors he has been formally taught to perform for me that make it easier for me to live independently and go about my daily life. With James’ assistance I am able to live on my own and do every day things that other people take for granted such as going grocery shopping, going to various appointments, going to work, etc.

The most easily recognizable task James does for me in public is guide work. Just like a guide dog for a visually impaired person, James leads me around obstacles, stops at curbs, indicates stairs, is trained in intelligent disobedience at streets and all of the various behaviors that are wrapped into the term “guide work.” The reason I need this type of task in a service dog is due to a Sensory Processing Disorder that comes in parcle with my autism diagnosis. My two most affected senses are my vision and hearing with some tactile. I also have problems with my proprioception and ability to properly tell where my body parts are in space. This means that I will walk into things or not properly judge how far away say a moving car is from me and put myself in potentially dangerous situations.

Also because of my sensory processing disorder, I have a tendency to get overstimulated at a much faster rate than most neurotypical people. When this happens my system goes into a type of shut down mode and stops accurately processing data. This leads to my getting disoriented and lost even in familiar places. So another thing I have taught James to do is find specific places we frequent often as well as our home and the last car we were in. James knows the names of about 12 local shops or businesses and the various routes on how to get there. He also has a very good memory and will tell me by turning his head in at the entrance if we are about to pass a place we have been to before and ask “Do you want to go here today?”

The sensory shut down mode is what prompted me to teach James a “follow” cue for following a person indicated until asked to stop. This way if we are in a very overstimulating environment such as Wal-Mart, I can tell James to “follow” a person in our party or a store employee and not spend all of my energy trying to stay focused on where I am in the environment and instead can spend energy on getting my shopping done and picking out the right items. I will also use this “follow” cue when we are in a new location that I don’t have the energy to learn right then such as traveling in a new part of a city or a large office building or doctor’s office so that I can save resources to use when I get to my destination and be more lucid then.

James has also been taught to find certain people that I spend a lot of time with by name, such as my parents, sisters and a few good friends. This is an important cue for me as if I am out with one of those people and get separated from them I get very anxious which causes me to process my environment in a less than satisfactory manner and I am then unable to find the person. So with James knowing some tracking skills and having the ability to search out those people, I am able to not stress about it as much and can get back in touch with them.

One thing that is very common to many autistic people, myself included is finding that heavy deep pressure is relaxing. I have a very difficult time relaxing in general, my nervous system is always on alert so anything that chills my system out and is not harmful is a good thing. All of my dogs in my life have been benifitial in this area as they become mini weighted blankets. James, for example, will drap his entire retriever sized 55# of body across my body if I am laying down on the couch which I find relaxing. Or at night on the bed, he will lay across my lower legs and feet, again which helps me relax.

Another task that my corgi, Monty, has been taught is to alert me to various alarms in the house such as the oven timer. The reason James was not taught this is that 1. Monty needed a job as he’s an active little dog and 2. By the time I got around to teaching it James was getting older and he told me he didn’t really care about the timers so he’d rather not. I couldn’t force him to do something he didn’t want to do and so I respected that and Monty was an apt pupil thence Monty learned that task for me. Again my needing this task goes back to my sensory processing disorder, the auditory part, and the fact that many times I tune out important noises and literally do not hear them go off until the food is now charcole in the oven.

As you can see from the tasks described above many are the same or similar to tasks that other types of working assistance dogs do for their handlers with other disabilities. Autism service dogs are fairly new as a group, but that doesn’t change what things they can do for their handlers. The reasons for an autistic handler’s needs may be different but dogs can still be trained to assist in a myriad of ways. I know for myself, having James and trusting his skills enables me to do a wide variety of things that previously I was not able to do on my own and that type of independence is something I thoroughly enjoy.

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Thank you so much for your insight’s Katrin, and for letting us get a glimpse into your life with James!

For more information, and to read about how Monty was trained with timers, be sure to visit Katrin’s blog. She also has links to the type of breed that James is, a flatcoat. Katrin’s blog is one I always read and I get excited when she posts, so I’m so happy she agreed to be my first ever guest blogger!

I hope this helps you get a sense of what it’s like living with autism. I know for me, reading personal stories about any disability is so much more informative than clinical articles. We’re a little over half way through the month, and I have really enjoyed learning more about autism, and I hope you have too. Stay tuned; more to come.

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Is childhood disintegrative disorder a form of autism?

Another pervasive developmental disorder is childhood disintegrative disorder. Again, we have a disorder that is similar to autism and I think it’s important to know what is and isn’t autism.

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The cause of childhood disintegrative disorder is unknown, but it has been linked to neurological problems. An affected child shows a loss of communication skills, has regression in nonverbal behaviors, and significant loss of previously acquired skills. The condition is similar to autistic disorder (

Childhood disintegrative disorder is a condition occurring in 3- and 4-year-olds who have developed normally to age 2. Over several months, a child with this disorder will deteriorate in intellectual, social, and language functioning from previously normal behavior.

***See article for symptoms***

This disorder must be differentiated from both childhood schizophrenia and pervasive developmental disorder (autism).

The most important signs of childhood disintegrative disorder are loss of developmental milestones. The child tends to have normal development through age 3 to 4, and then over a few months undergoes a gradual loss of previously established abilities (e.g., language, motor, or social skills). Generally, the diagnosis is made with a loss of functioning in at least two areas described above.

Outlook and prognosis:

Unfortunately, the prognosis for this disorder is limited. The loss of functioning will likely be permanent. However, to some degree, behaviors can be modified.

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The article says that treatment is similar to treatment for autism because they are so similar. I realized I haven’t gotten in to treatment for autism, so I’ll need to do that.

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Is Rett Syndrome a form of Autism?

Autism is a pervasive developmental disorder. There are other disorders that fall into this classification which can be misdiagnosed as autism.

Rett syndrome is one of these disorders:

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Rett syndrome is a disorder of the nervous system that leads to developmental reversals, especially in the areas of expressive language and hand use.

Rett syndrome occurs almost exclusively in girls and may be misdiagnosed as autism or cerebral palsy.

Studies have linked many Rett syndrome cases to a defect in the methl-CpG-binding protein 2 (MeCP2) gene. This gene is on the X chromosome. Females have two X chromosomes, so even when one has this significant defect, the other X chromosome is normal enough for the child to survive.

Males born with this defective gene do not have a second X chromosome to make up for the problem. Therefore, the defect usually results in miscarriage, stillbirth or very early death.

The condition affects about 1 out of 10,000 children. Groups of the disease have appeared within families and certain geographic regions, including Norway, Sweden, and northern Italy.

An infant with Rett syndrome usually has normal development for the first 6 – 18 months. Symptoms range from mild to severe.

***Check out the article for symptoms***

Genetic testing may be done to look for the gene defect associated with the syndrome. However, since the defect is not identified in everyone with the disease, the diagnosis of Rett syndrome is based on symptoms.

Outlook and prognosis:

The disease slowly progresses until the patient is a teenager. Then, symptoms may improve. For example, seizures or breathing problems tend to lessen in late adolescence.

Developmental regression or delays vary. Usually, a child with Rett syndrome sits up properly but may not crawl. For those who do crawl, many do so by scooting on their tummy without using their hands.

Similarly, some children walk independently within the normal age range, while others are delayed, don’t learn to walk independently at all, or don’t learn to walk until late childhood or early adolescence. For those children who do learn to walk at the normal time, some keep that ability for their lifetime, while other children lose the skill.

Life expectancies are not well studied, although survival at least until the mid-20s is likely. The average life expectancy of a girl with Rett syndrome may be mid-40s. Death is often related to seizure, aspiration pneumonia, malnutrition, and accidents.

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You can kind of see how this might be misdiagnosed as Autism, especially in a child’s early development. It is definitely a very similar disease, being in the pervasive developmental disorder category. But from what I found on Rett Syndrome, it is so much more severe than autism. I’m glad to find this information, since it seems so many of these disorders are lumped into one name, autism, when actually they are quite different.

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Autism facts

hI finally found a good concise source. Thank you NY Times!

I know I did another overview, but I really like the information I found on this site. So here are some more in depth facts, taken from the linked article above:
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Autism is a physical condition linked to abnormal biology and chemistry in the brain. The exact causes of these abnormalities remain unknown, but this is a very active area of research. There are probably a combination of factors that lead to autism.

Genetic factors seem to be important. For example, identical twins are much more likely than fraternal twins or siblings to both have autism. Similarly, language abnormalities are more common in relatives of autistic children. Chromosomal abnormalities and other nervous system (neurological) problems are also more common in families with autism.

The exact number of children with autism is not known. A report released by the U.S. Centers for Disease Control and Prevention (CDC) suggests that autism and related disorders are more common than previously thought, although it is unclear if this is due to an increasing rate of the illness or an increased ability to diagnose the illness.

Some parents have heard that the MMR vaccine that children receive may cause autism. This theory was based, in part, on two facts. First, the incidence of autism has increased steadily since around the same time the MMR vaccine was introduced. Second, children with the regressive form of autism (a type of autism that develops after a period of normal development) tend to start to show symptoms around the time the MMR vaccine is given. This is likely a coincidence due to the age of children at the time they receive this vaccine.

Several major studies have found NO connection between the vaccine and autism. The American Academy of Pediatrics and the Center for Disease Control and Prevention report that there is no proven link between autism and the MMR vaccine, or any other vaccine.

***Ok, I think that’s all I need to say on the vaccine hysteria. I’ve never believed vaccines cause autism and I really don’t want to write about it. Though I will if I think I should go into this further.***

Some doctors believe the increased incidence in autism is due to newer definitions of autism. The term “autism” now includes a wider spectrum of children. For example, a child who is diagnosed with high-functioning autism today may have been thought to simply be odd or strange 30 years ago.

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There’s more information on that page that will be too hard to copy and paste, like a list of symptoms. If you want to know more, go check it out. The link is above. I will be writing on the different forms of autism as well, since this page also has more clear cut links.

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Autism and confidence

She tried out for the show, she explained, partly to test her own limits. “It was a point in my life where I was thinking either Asperger’s was going to define me or I was going to be able to work around it,” she said. – New York Times article

Back in my sighted days, I was a big fan of ‘America’s Next Top Model’. Seriously? Yeah, seriously haha! I realy enjoyed the photography, the fashions, and I love Tyra Banks. She really helped me find an inner confidence, my inner diva. I used to watch her talk show too.

Back in 2007, there was a contestant with Asperger’s. “Heather Kuzmich has the neurological disorder known as Asperger’s syndrome. She is socially awkward, has trouble making eye contact and is sometimes the target of her roommates’ jokes.” reports ” Tara Parker-Pope in the above linked article.

Heather was my favorite contestant. I loved her looks, her personality and her courage to go on this show. I don’t know if I related to her because we both had a disability or what. I voted for her every week and I would pull up her photos on the website and just gaze at her. She had such an amazing look about her. I would get angry at the other girls when they made fun of her. In the articlle, Heather says they didn’t make fun of her as much as the show portrayed, and there were actually some really good moments with her roommates.

Heather was definitely the reason I became aware of Asperger’s and Autism way back then and I think it’s great that she got up there and did what she did. Not only was it great for her confidence and self esteem, it gave a face to Asperger’s.

The above linked article has some really good information. I urge you to read it. The whole point of my doing these posts is to help spread awareness for Autism, since April is Autism awareness month. I hope people are reading. I haven’t gotten many comments aside from what Katrin writes, which by the way, her comments only add to the information, so be sure to check them out.

I’ll be working this weekend on getting caught up with these posts, as I’m determined to have a post for each day of the month, even if they aren’t posted on the exact day.

Here are some videos of Heather doing various interviews. Somehow this page seems to be cycling through several videos. Blinks, when it goes quiet, it’ll start back up again.

In one of the videos, Heather talks about needing confidence and elegance, and she laughs about not being very elegant. I remember that from when I watched the show, but I just thought it added to her appeal. Also, in one of the videos, she talks about getting lost in one of the challenges and I couldn’t help thinking that she needed a dog like Katrin’s James hehe!

Anyway, I just really love Heather and I don’t know why I didn’t think to look her up sooner.

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Autism and bipolar disorder

I was talking to a friend the other day, who has bipolar disorder and we got to talking about this person’s job and how a regular schedule was requested. Basically, the hours worked weren’t in any kind of routine, and it was causing major problems with sleep and also aggravating the bipolar. This person hasn’t been diagnosed all that long, and is constantly learning what works to keep things on an even keel.

One of those things is routine. For many with bipolar disorder, a set routine is paramount. I know for my friend, things seem to coast along a lot better when things are set. For example, while in school, my friend knew what days were class days, what assignments needed to be done, when time for sleep, even limited, was available. With the job, the hours were never the same, there was no routine, just when a sleep schedule was becoming something to get used to, things would change. My friend finally realized this wasn’t going to work, and finally confided in a manager who totally understood and created a set schedule that is condusive to a normal sleep pattern.

When my friend was telling me all this, I couldn’t help but think about what I’ve read about autism that is so similar. I told my friend this and said it would make for an interesting subject to research.

So I googled “autism and bipolar”. The article I found is quite old, from 2003. Actually it’s less of an article and more a question from a parent of an autistic child. The parents were both diagnosed with bipolar 2 and she wondered if there was any correlation. The doctor’s response is that he’s not sure, and after doing some of his own research, didn’t find anything definitive.

One thing I found interesting is that there was a study done giving Depakote to autistic children, and some improvement was noticed. Depakote is one of the effective treatments for bipolar.

I know things like this might never be scientifically proven, but one has to wonder, especially with anything neurological. Are they all related? Will we ever know?

PS – The page linked above includes links the doctor referenced in his answer.

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