Please check out my blog and follow my adventures as a woman diagnosed with Asperger's.

by Stacy Bryan

Autism is on the rise, especially Autism Spectrum Disorders such as Asperger’s Syndrome. It is reported that about three quarters of those diagnosed with Asperger’s Syndrome are male. A mere one out of ten are women. Upon my diagnosis of Asperger’s Syndrome at the age of 32, I found myself inundated with the typical male stereotypes of this disorder.

“You can’t have Asperger’s because you function so well!”

Really? I would challenge anyone that claims that I “function well” to talk about my life with me. Lets see, yes, I have been married for eleven years and I have two children. Not that I place my marriage in the news for public scrutiny, but I will admit that our marriage has been anything but easy. In fact, we have been in and out of marriage counseling for years now, and I am extremely vulnerable to relationship predators whom tried to tell me just why I wasn’t happy.

Lets see, going down the line.

Career? Well, I owned my own business for ten years. Did I profit? Not really. I made a small living for myself, but in the end I amassed so much debt in order to keep our family in a comfortable “self employment role” that I couldn’t pay it back.

Kids? I’m a good mom. Both my children are also diagnosed with Asperger’s Syndrome, and my kids think I’m fun. Anyone else that spends any large amount of time with me will find that I am adventurous, a joker, silly, and never able to live too serious of a life. My kids dig that, and they prefer to spend their time with me as much as possible. I can’t really say I am anything close to a neuro-typical “soccer mom”. In fact, my kids are oftentimes forced to quit events because of my lack of interest in getting them to their functions.

Socially I could pass as “normal”, in fact, for my entire 33-years I have passed as “typical”. Still, this comes from years of having to suppress my true feelings of fear, depression, anxiety, and obsession. Living a life undiagnosed oftentimes leads women with Aspergers to the point of professional intervention. Mine was during my marriage problems. While we were going to a very good psychologist here where we live, we learned that many of our issues were based on not knowing how to “be married”, but also, my psychologist started to pick up on many of the classic signs of autism.

I have sensitivities to sounds, smells, to this day I can’t be around a smoker, I can’t stand to hear shopping carts clank together, and if I get into an argument with someone, I will hold a grudge for years. My social life has been sprinkled with just a couple of good friends who could accomodate for my lack of social graces, and now I find that I have gained a couple of very valuable friendships whom seem to look at me as the “little sister type.” This is important to me because if I am unable to handle being “me” in this big bad world of social reasoning, I will be plagued by depression and anxiety.

People with Asperger’s are commonly refered to as “uncordinated”. This is something that I love to correct people on since many women and girls with Aspergers are very athletic. I was a soccer and softball start, yet my life passions are snow skiing and mt. biking where I have succeeded at the competitive levels. Most days you will find me ski mountaineering or out on an isolated mt. bike trail, joined only by my Ipod and large selection of “gospel rap”.

Yes, I have found some social networks for women with Asperger’s. I participate in an online women’s yahoo group geared towards women with Aspergers. I also frequent a site devoted to those who are married to Asperger’s spouses. I find some common factors in the womens groups: An innability to function well in relationships, inability to be in crowded or loud places, and the fact that us aspie women oftentimes place ourselves in dangerous social situations.

My biggest issues?

Knowing when someone is flirting with me.

I have heard of women being robbed at knife-point, even raped because they were lost in their own world of aspie thinking while walking through an empty parking lot. My biggest issues? Knowing when someone is flirting with me. Knowing when to tell my husband that a guy made me uncomfortable because he sat and listened to one of my many aspie-common obsessions which include politics, sports, and religion.

Living our lives as aspie women brings complications and difficulties. For those of us who are able to seek social acceptance and ask for help when we need it; we find that our lives can be outragously happy and rewarding.

Will you follow me on this journey? I hope so. Please check out my blog and follow my adventures as a woman diagnosed with Asperger’s. I want to help present the realities that us oftentimes undiagnosed and little understood women face everyday.

By Natalie Jaro

To Read Part 1 & 2, click here.

The Children’s Hospital recommended a psychiatrist who began Atticus on some medications for his ADHD.  The medication negatively aggravated his emotional state so we changed his medications and doses a few times until we found a combination that seemed to produce only some positive change. We continued to try medications but to no avail. Eventually we went to another psychiatrist who declared Atticus’ condition as not ADHD, by early onset bipolar. We began to try other combinations of drugs, all of which made the problem worse. Finally our son’s psychiatrist admitted he was not entirely clear what the problem was and suggested we get another opinion. Meanwhile, during all these pharmacological changes, Atticus was asked to leave four different schools he attended.  It was all a whirlwind, why we didn’t just put Atticus back in public school I’ll never know.  It was an absolute mistake despite the insistence by special services that he needed a more challenging environment.

It was then that I found a small, private, special-education school for Atticus for the summer.  This went well, and it was here that his teacher recommended a doctor for us to see in Evergreen.  Within two minutes of entering into his office he knew what was wrong, “Your son has autism.”  It was only then that I knew he’d made the cored diagnosis. I then said, “Actually, I’m relieved he doesn’t have bipolar disorder.”  To which the doctor gently replied, that if he had to decide as a parent, for one or the other, he’d chose bipolar disorder. “Autism,” he said, “is much more debilitating.”

A person with bipolar disorder, he explained, is able to experience a wide-range of emotions and, although difficult, can still connect with people. Autism, on the other hand, is like being cut off, in a bubble, and unable to see outside oneself.

I was relieved and devastated all at the same time.  At least we could offer a concentrated effort now that we’d tracked down an accurate conclusion after many years of tail chasing.  I finally felt like I could breathe, we’d begin a repertoire of medications (once again) meant to target the movement disorder.  Lo and behold, the medications finally worked.  They did not eliminate the problem, but for the first time ever, they made it possible to hold Atticus still in my arms, and for him to connect with other people.

By this time Atticus was back in another public school. This school was located on the other side of our neighborhood and had a special needs program that integrated children with autism throughout the school. Most of the teachers were trained to understand and help those student with autism. In the last two years, Atticus has finally become successful in school, he loves to go, and for the first time ever, he has positive support all around him—from peers to his homeroom teachers, even the school nurse.  He went this summer to a computer camp and made it through the course with relative ease.

It has been an overwhelming obstacle to get to where we are now.  I know that many parents of children with autism live day in and day out with much more severe variations of the disorder.  I have listened to them on forums and in classrooms and at lectures.  I have read about them in books, magazines and in interviews.  I have seen them on television and have met them at my child’s therapy. To anyone affected by autism, we owe an ear and a lending hand. For those us who do not have autism, it requires stepping into another person’s shoes.

People always say how loving Atticus is–if you help him with something, he loves you forever. Often he says to me, “Ah, Mom, you’re so sweet.”  Atticus would not be the person he is today without all the help he has received along the way. Even if he will never be able to step inside my shoes, the shoes Atticus wears are big enough for the whole world. All the world needs to do is just try them on.

To read Inside These Shoes, Part 1 Click Here

My teaching was then interrupted when Atticus was born in the Fall of 1999.  For the first years of his life I stayed home with him.  It was around the age of one that I began to notice some unusual behavior.  For one, he moved constantly, a normal trait of children entering into toddlerhood, however, this movement was more frantic than most.  I wasn’t the only one that was exhausted, I could see how disorganized he was, how hungry for rest, only involving himself in a few choice activities and doing them again and agin.  He strewed things everywhere and never hesitated from winding a dizzying path in his wake.  He stopped taking naps and didn’t like to be held nor could he sit in my lap for more than a few seconds.  Then he started doing something that was particularly upsetting, he started head butting me, hard.  It hurt.

It was then that I began telling people closest to me about the red flags I saw.  I was deeply wounded when everyone around me did not see what I saw.  All my family members, including Atticus’ father, even the pediatrician, did not share my opinion.  I felt very alone during this long year from ages one to two.  I had no choice but to do what I could as everyone around pegged me as an overly concerned parent.  The confidence I had earned from my years as a teacher began to wane as I wondered and doubted myself.  I decided to delve in whole heartedly with Atticus and try to compensate. I set up the basement of our home like a Montessori classroom and began working with him for 30-45 minutes a day, teaching and observing his natural behavior and trying to come to a conclusion.  I worked with him both at home and out in public places like the park and with friends.  Many of my days ended in tears and frustration.  I’d take him to the grocery store or on errands, I had so many looks from other parents and comments like, ‘Why don’t you control your child’.  It was exhausting, he never sat still and grabbed onto everything and did not respond to consequences or even mild punishment like time outs or taking away privileges.  I began to notice that he’d ask me a question and I’d answer it but then he’d continue to repeat the question, again and again.  Was the answer being processed?  He began to get very disconcerted about any kind of variation from the order of things, if I drove another way home he’d be in an uproar and in tears.

Then nearing the three-year-old mark, my husband and I put him in a part time morning program at a University child developmental center in Colorado.  I figured what better place than at a University center where much new research and information was going in and coming out.  It was to be the beginning of a long road ahead of schools for Atticus that were not successful or productive places for him.  Before long we were being called into the office to speak with Atticus’ teacher and the principal.  They wanted to bring in a specialist from a non-profit organization created and funded for the purpose of early intervention for children with special needs.  These approaches lasted the rest of the school year at which time we were told that the school would no longer be able to accommodate Atticus because of his aggressive behavior toward other children that involved biting, pushing and head butting.  After many observations and unsuccessful approaches at both home and in the classroom we were encouraged to have a professional evaluation done.

I checked into The Children’s Hospital in Denver and arranged a battery of tests to be done.  It took a few months before Atticus could be seen.  So while we waited to have those tests done I took him to a local child development center where he had a speech pathologist and a occupational therapist evaluate him.  The speech therapist explained that Atticus’ receptive language skills were lacking and so we began weekly speech therapy sessions.  The occupational therapist also felt he needed to make important strides in both his gross and fine-motor developments.  I observed these things as well but it was often difficult to get him interested. He rarely pulled away from the few fixated activities he did, like lining up cars or other objects. The occupational therapist gave me a little brush for his skin intended for sensory-integration. We’d swing him in a swing and I also had a weighted vest made for him to wear—all of which was believed to help regulate his sensory imbalance. By that time I’d read many books on ADHD, sensory integration disorder, early onset bipolar and only a little bit about autism.

Before long it was time to visit the Children’s Hospital in Denver and after a battery of tests—psychological, social, psycho-motor, cognitive and physical—we received the results. All his physical tests were normal and his cognitive tests were better than average.  But, he was diagnosed with ADHD and possible early onset bipolar because of a history of it in the family. Once we had the paperwork we needed, we were able to register Atticus in a neighborhood preschool for special need’s kids.  The program also integrated normally developing preschoolers as well.  During this time Atticus was successful, but by the end of the year they told us that he wouldn’t qualify for special services anymore because his problems were not severe enough to warrant it. I was reluctant at this apparent push from the special needs circuit, but tried to grab onto the positive and trust that more successful school experiences were ahead.  Unfortunately Atticus’ progress was soon thwarted by the ill-effects of two wrong opinions and inappropriate drugs.

To continue reading, “Inside These Shoes” >>

One of my favorite lines from a movie is when Gregory Peck, who plays Atticus Finch, in ‘To Kill A Mockingbird’, tells his temperamental and compulsive daughter, Scout Finch, that she’ll get along a lot better with ‘folks’ if she only tries to step inside their shoes and walk around in them. A nugget of truth that we as educators and parents start to teach our children from early on. It isn’t because children are ‘bad’ or ‘selfish’ but it is part of their natural development to be self-centered—for young children this is merely a scientific fact. Despite his later criticism, a pioneer in childhood development, Jean Piaget, found children up until the age of seven, unable to deductively reason from anything other than an egocentric position in the so-called ‘concrete-operational stage’. For example, if a child sees a bug on the floor, he/she assumes everyone else in the room can see it too even if they aren’t looking down or are half as close to the floor as they are. Studies do show that even young children show empathy early on, however, I am speaking merely on a developmental level. It is this particular oddity that makes autism unique, the cornerstone of what my autistic son struggles with—to be able to put himself in another’s shoes, per say. Ironically, after watching, ‘To Kill A Mockingbird’ for the first time with my son well near to being born, full and round in my stomach, I made the decision after the movie ended, to name him Atticus.

Maybe my son, in the end, will be my reminder to see the world again through eyes I once knew, but have forgotten, and to discover the wonder of it again. Coming to terms with my son’s autism diagnosis has been a unique journey, one filled with the sweetest of smiles but also with the bitterest of tears and frustrations. I have had to work through the initial concern that something was wrong to heading out in search of what was wrong (no easy task in this case), to learning and accepting his problem and then discovering how to adjust to it. The unsurpassed love I have for my son has compelled me forward to continually seek help and hope for the both of us. The stories of other parents and people involved in the lives of children with autism are always helpful, each word sheds a touch more light onto a road we do not walk alone. The stories often begin the same, but are never quite our own, stories that beg to be told. This is my story, but mostly, it’s about Atticus.

Autism, it is a word that has mystified the modern-day world, a condition I don’t remember twelve years ago when I first began a career as a Montessori educator in early childhood. The focus of my training was on the normal stages of development and everyday I moved more ahead in both theory and in practice in my understanding of young children. I worked full-time in a school in Lake Forest, California. I trained on weekends, evenings, and over a summer until I was certified and began teaching for many years later. Within those years I watched many children come and go. I observed them, I taught them and they taught me most of what I know about them. During every school year there were always a few children I’d notice in the class who had differences. For example, the repetition of certain behaviors, like body movements, tics or habits, difficulty relating to peers or socializing, developmental delays, confusion, agitation or aggression.

It broke my heart, I wasn’t trained to help these children, I did not know how to help. I’d read and try to learn, but I was discouraged from implying to parents that something was out-of-sync with their child. It was only under more extreme cases that we’d then meet with the parents with more than one teacher and representatives from administration. What was even harder was when we’d have parents who’d do nothing once they were told to investigate the concerns we saw—without their help what was their future to bring?

To continue reading “Inside These Shoes”>>

by Jacki Edry

Receiving a diagnosis of autism can be very confusing. Within the blink of an eye, an ordinary family is bombarded with a bunch of names that create a whirlpool of mixed emotions. These often include fear, anger, confusion and anxiety. Along with this, sometimes people experience a feeling of great relief at finally having a name for the unusual symptoms that they have watched develop in front of their eyes.

One thing I think is for certain, though- I can’t imagine that any person remains the same after hearing the diagnosis of an ASD. The question is how they decide to change their life in light of the news.

Once overcoming the initial shock of diagnosis, it is important to figure out how to proceed. This can be a major challenge, which begins with trying to understand what the diagnosis of autism really means. Sometimes I think that doctors need to provide parents with a glossary of all of the autism-related terminology that they will need to understand almost immediately. Such a glossary could help to familiarize people with the words that will be thrown around in almost every professional setting that they will find themselves in. It could perhaps shed a bit of light on diagnostic terms such as ASD’s, PDD, autism, Asperger’s Syndrome and the likes. It would help to familiarize people with the names of different treatments, such as ABA, Options, Floor Time, Verbal Behavior, and so on. As far as my experience has been, doctors don’t usually take the time to provide such a learning tool, and parents need to start researching things on their own.

There are so many different terms, and so much to learn, that I dare to make an unusual suggestion. I think that the best thing to do after receiving a diagnosis is to simply stop and breathe. And then it’s time to figure out what is really wrong with your child. The words and terminology that you will hear are just that, and they might just prove to be practically meaningless to you. For example, if you line up ten kids in a room who have been diagnosed with PDD, you may see some similarities. But you will see a ton of differences. So the diagnosis is not so important in relation to how you will actually decide to treat your child. A diagnosis is necessary to enable you to get services, but it does not really give you a lot of helpful information as to how to best help your child to overcome his difficulties. In order to figure this out, I suggest that you take into consideration the following concept.

Tip 2- Become a Scientist

What will help you to understand your child is to put everything aside and to start observing him. You will need to assess what he is or isn’t doing, and then you should try to figure out why he might be doing each particular thing.  In short, you will need to become a scientist.

It is important to keep in mind that your child does things for a reason, and that the behaviors are often a symptom of something that is not working correctly. When you go to choose a treatment plan, you might want to find something that addresses the root of the problem, as opposed to a program that addresses strictly behavioral issues.

It is well known that ASD’s usually come in combination with a faulty sensory processing system. Examples of this can be poor auditory processing, hypersensitivity to tactile or auditory stimulation, a lack of spatial awareness and more.  Finding out which senses aren’t processing information correctly is a good place to start analyzing your child. The more data that you gather, the easier will be to decide how to start treatment. I suggest that you concentrate on the “what” and “why” to begin with, as opposed to looking at what is considered to be appropriate or inappropriate behavior.

Throughout the almost 12 years that I have been observing my son, I have noticed an amazing thing. The things that he concentrates on are the exact things that he needs to work on. He has an intrinsic knowledge of what he needs to focus on. If we begin with him where he is at and then expand upon what he is doing to include things that we want him to focus on, we strike gold.

I am well aware of the fact that I am not the first person to make this observation. Treatment methodologies, such as the unique system used at the International Center for the Enhancement of Learning Potential in Jerusalem, Floor Time and Options all take this into account. Although this concept is certainly not something that I have discovered, it is something that I see in action every day. What I want to stress is the importance of its value.

In conclusion, I would like to reinforce the few critical points that I have mentioned in this article. Once you begin to recover from the initial shock of hearing a diagnosis, you will begin a long and fascinating journey, during which you will discover many new things about yourself and your child. If you take the time to stop and observe your child’s behavior, it will help you to understand the best way to begin formulating a treatment plan. And remember to keep in mind you should never underestimate your child’s ability to find the exact tools to help himself. He can certainly become his own- and your own- best teacher.

*The use of the word “his” throughout the article was strictly for the convenience of the reader. Please note that all concepts are equally relevant for both males and females.

by Inna Selipanov

Being a parent isn’t easy, and neither is being a child. Matters are complicated tenfold for parents of autistic children, and the children themselves. Autistic kids are often ridiculed in school, and are made to feel even more isolated than they already are. Parents, in turn, struggle to cope with these difficulties and to help their children understand the world around them. There is something you can do, however, on a particularly bad day to help your child feel more at ease.

Create a miniature world, in which your child can take refuge. Be creative with this, or let your child make some suggestions. For example, have a set of toys/dolls reserved only for this purpose. Give some of the dolls imperfections, both physical and emotional. Or create an imaginary world on paper. Help your child draw different characters, and give them all names. Another idea could be to create a separate corner in the child’s room, using a tent or fabrics and cloths. This should be a safe place where your child can go to get away from the hardships of the real world.

Whenever your child comes home from school and has had a bad day, you can take him to the imaginary world you have both created, regardless of what form it is in. Make sure  the child understands that this other world is free of ridicule and problems, and all things work as one expects them to. Give this to your child as an emotional tool to use against all hardships.

This idea is actually inspired by an autistic man, who is now making a living from this. When he was a child, he created an imaginary world for himself, made up of many different characters. They became his “friends” and helped him deal with difficult times in his life. These characters have stayed with him into adulthood and continue to serve great purpose in his life today.

by Jacki Edry

I will never forget the day that my child received his first diagnosis of PDD. It happened when he was about 2 ½ years old, and I was standing in the middle a crowded hallway of a clinic in Israel with the doctor. She simply looked at me and stated “Your child has PDD. We’re going on vacation for the next month, so give us a call at the end of the summer to begin treatment”. Simple as that. And then she walked away.

I stood there for a few minutes, completely shocked. Not so much about the diagnosis, because I had been working with autistic children for many years. However, the casual way in which she notified me of this totally devastating piece of information was quite surprising, to say the least. I felt like my entire world just came crashing down on me. At the same time, I knew that I needed to form an immediate plan of action. And not after the summer vacation, that was for sure….

This was the first of many similar experiences, where “professionals” demonstrated a complete lack of sensitivity, or announced a prognosis that was, to put it mildly, less than positive. Ten years have passed since that day, years which have been full of learning, challenges, and wonder. I have gained a tremendous amount of knowledge about autism, and how believing in the power of the human soul to heal and grow can produce incredible results. Our family has seen many miracles over the years, and with G-d’s help, and a lot of work, we will continue to see many more. And, believe it or not, we are certain that our son has been the most incredible gift to our family, and we have all grown in ways that are incomprehensible while trying to help him to overcome his difficulties.

I would like to share with you a few tips that I have found to be extremely helpful over the years. Perhaps some of them might seem a bit unusual, or you might think that I am somewhat unrealistic, but I they have worked for us. So please bear with me if you think I’ve gone a bit overboard….

Tip 1- Believe in yourself and your child

No matter what the professionals say to you, you must believe in yourself and your child. Trusting your instincts, and believing in your child’s ability to improve are the two basic requirements for survival and improvement. Without these two initial criteria, you will have a very hard time helping your child.

I was very fortunate throughout the years, because I intrinsically trusted myself and the path I followed for treatment with my son. In addition, both my husband and I firmly believed that he was going to overcome his disability, and that he will achieve happiness and success in life. To date I am blessed with this belief.
Doctors and professionals have seen many instances of children on the spectrum, and there are definitely trends or commonly seen prognoses for children with ASD’s. However, as you know, to every rule there is an exception- so if one of those professionals gives you a bleak outcome for the future, I suggest that you don’t believe him. It will only do you good, you can be certain that your child will feel that you believe in him. I remember that when my son was 4 ½ years old, we took him to a prominent neurologist in N.Y. After five minutes he concluded that yes, our child was autistic, and added that since he hadn’t started speaking to date, he wouldn’t speak at all. He suggested, as a non-religious man, that perhaps we should start praying, and that we return in another three months for a visit.

Needless to say, the return visit never happened. What did happen was something very different indeed. We walked out of the office and my husband said very firmly that the only one with a problem was the doctor, and that his bleak prognosis was irrelevant. Our son was going to be just fine. The interesting thing was that about six o’clock the very next morning, as we were still drowsily opening our eyes, we suddenly hear our son walking around the apartment looking for me, and calling out “mommy…mommy”. So much for never speaking…

The point is that you never know what your child will eventually achieve in life, and no professional is qualified to decide what his or her future will be. So why not choose to believe that the future will bring good things, it’s far more pleasant than thinking the opposite…