spirit of autism loaf of bread

Autism Parenting: Are You Going to the Hardware Store for a Loaf of Bread?

spirit of autism loaf of breadThere is a really funny skit I remember from my childhood years of watching The Electric Company about sweet rolls.  It was a simple conversation between a waitress and a customer:

“A cup of coffee and a sweet roll.”

“We’re out of sweet rolls.”

“Glass of milk and a sweet roll?”

“We are… out of sweet rolls.”

“Iced tea and a sweet roll.”

“We are OUT of sweet ROLLS.”

“Orange juice and a sweet roll?”

“WE ARE OUT OF SWEET ROLLS!!!!”

(silence)

“Okay, then I’ll just have a sweet roll.”

It still makes me giggle, probably because it describes most of the people I interact with daily :)

Here’s the video if you need a memory jogger:

If you look at it from a different angle, in relation to how your Autistic child processes information, it can lift another veil in understanding and diffusing some of those frustrating moments.

How many times have you had to repeat a command or request to your child for what you perceive to be a simple and obvious task? If your house is like mine, it can sometimes be seven or eight, and then my patience can surpass simmer and go straight to a rolling boil. While it’s true children make you repeat yourself in general, consider that your Autistic child simply and honestly may not understand what you’re asking, nor do they know how to ask for clarification. Many times, if a question or statement isn’t understood by my son he will simply bypass it and move on as if it were a “File Not Found” error that automatically redirected to a new website.

Multiple commands are difficult to process. It took me a while to realize this and stop perceiving my son as being defiant.  Asking him to put on his socks and shoes, brush his teeth, and meet me in the car while I pour my morning coffee (the way I would process the morning’s rituals) would result in absolute shutdown.  I would most likely finish my tasks, expecting him to be diligently checking off the list I assigned him, and then find him on his Nintendo DS with none of the items completed.  Naturally at that point (after a minor litany of loud grumblings), I would also expect him to hurry through the list sharing my sense of urgency, understanding that we were now late.

It never happens that way.

Here’s the deal. He doesn’t process multiple commands. He doesn’t break his ritual or the order things should be done because I am yelling that we’re late. He doesn’t “just know” what comes next without being told. I can tell him we are out of sweet rolls until I’m shouting it, but he will still ask for them. Why? Because at this time, that is how his brain processes information. It is MY EXPECTATIONS of him that are causing the frustrations and meltdowns, not his behavior.

If I continue to repeat myself in these same fashions, doesn’t that mean I’m expecting him to do something he’s not capable of? Wouldn’t that be the same as going into a hardware store and asking for a loaf of bread? Would I keep asking the cashier over and over for bread, raising my voice and getting frustrated, or would I eventually figure out that I have to go to a different store to get what I need?

I learned the hard way that I can’t get mad at my child when I am expecting something from him based on the way I operate and think. Something he simply isn’t capable of. Boy do I love the mornings so much more now that I am looking for bread in the right store, and so does he!

BONUS tips for the morning:

  • Single commands (Put your socks on. Good. Now go brush your teeth. Great job!)
  • Predictable routines
  • Visual cues hanging in a central location that you can refer to
  • Laying out items the night before
  • Saving TV or games until after tasks are completed (still working on this one!)
  • Allowing extra time for zippers, buttons, etc.
  • Having races to see who finishes some of the tasks first
  • Using a timer – making it a fun game
  • Lots of positive reinforcement!

How often do your expectations cause communication breakdown with your child? Share your thoughts by commenting below!

image courtesy of moodrush.de

Craptastrophes and Holiday Travel

image courtesy of moodrush.de

image courtesy of moodrush.de

And so it begins. The holiday season is landing in our laps, but that’s not always exciting when it comes to family members on the spectrum. Ever since an unnamed airline asked us NEVER to return when my son was three (NINE years ago, and pre-diagnosis) we haven’t done much holiday traveling. A small, manageable road trip here and there, but nothing to write to Reader’s Digest about.

Guess what! This year I’m taking my kiddos to New York/New Jersey for the holidays! Crazy, yes? I haven’t been home since right after 9/11 and boy have I been craving good pizza and bagels. Also, my kids’ two internet besties live in the area and they want to meet them in person. Yes, I’ve seen them on Skype video chats, they’re actually real :)

What’s this have to do with poop? Ha, you may regret you asked. OR, you may be in a similar situation and now you will know that you’re not alone. We’ll see…

If you’ve been following the Blog for a while you may recall that my son suffered four months of diarrhea with “unknown” cause. After some extensive (out-of-pocket expenses!) testing, some genius finally figured out that he had a bowel obstruction. That poor child went through so much when it came to all the tests he was subjected to as well as the final cleaning of the pipes. I, too, became a changed woman in regard to the things I’ve seen and handled.

Since that experience, he’s been TERRIFIED to go. He exhibits avoidance behavior to the max when it comes to this topic. His muscles hold it in by default until the body takes over and results in light “elimination notification” that he’s holding a lot more. He holds it because he knows it will be a difficult and painful experience, which is self-perpetuating, of course – it’s a difficult and painful experience because he holds it. That coupled with the fact that if I’m not home to handle the “paperwork” he feels he has no option but to keep it in.

You can imagine the devastating implications this problem has on any kind of social life (thank goodness Skype doesn’t have smellevision capacity). We have tried every supplement and over the counter medication known to mankind. We have practiced sitting and pushing and routine and ritual and social stories and tricks and negotiations and rewards and punishments. We’ve tried “we can’t go to New York unless you learn how to poop.” But that’s not really fair.

As hard as this is for me, I can only imagine it’s tenfold for him. He knows it’s not the most desirable behavior, because he avoids coming out of his room every time he first has an issue. Or he walks backward (like I don’t know!) away from me to hide his bottom.

Overall, I’m not giving up! I will do what I do – research, experiment, keep soldiering on to make this a much better experience for him. BUT we are traveling for the holidays… so what do I need to consider as far as tools and resources for this situation?

You see, when he does finally go (which takes an Act of Congress and a lot of bribing), it involves a lot of bleach, a lot of wipes, medical gloves, several pair of boxer briefs, a shower, and a lot of, um… compacted product that isn’t willing to go where it belongs when the toilet is flushed. Yeah, it ain’t pretty. Between my poop scavenger hunts from the huskies in the back yard and my poor child’s digestive issues, I sometimes feel like Pyle in Full Metal Jacket (I AM in a world of S**T!). 

What do we need to pack for out of town potential craptastrophes? Do they make travel-sized plungers? Should we re-invest in Men’s Depends just in case? There are no “how to potty train your teenager” resources available, unfortunately. I’m not sure what lies ahead (and you probably don’t care to be updated, ha ha) but I want very badly for this to be a fun and successful trip for my son, not to be remembered with any kind of embarrassment or troubles. I imagine I will focus on getting the desired result for him while we’re at base camp each night (the hotel).

Have any of you had craptastrophes after an appropriate age? What helped? How did it affect travel plans? I love hearing from you, so share the poop… I mean SCOOP by commenting below!

Spirit of autism stim

Why Do They Stim?

Spirit of autism stimAs a caregiver, educator, or even parent of a child with Autism, you’re most likely accustomed to witnessing some repetitive behaviors on a regular basis that seem odd… and even make you feel a little uncomfortable.

Whether or not you are familiar with the term “stimming” (short for “self-stimulation”), you’ve probably seen it in the form of hand or arm flapping, spinning, rocking back and forth, or self-injurious versions like hitting or biting oneself.

Stimming can also be verbal. It’s not uncommon to hear repetitive squealing, screaming, or sound effects coming from a child with Autism. In fact, one of my son’s favorite noises can be heard here (speakers DOWN, trust me!)   The neighbors have actually called the police in response to hearing that one on a summer day when his bedroom windows happened to be open. They thought he was in a life-threatening situation!

Yes, some days my son’s stimming can be enough to turn my hair grey. But then I think, if it’s this hard for me to deal with his noises and repetitive behaviors… what is HE going through? How hard is it for HIM to deal with his environment?

Why do they stim?

One of the biggest reasons is to counteract an overwhelming sensory environment. 

We don’t just have five senses, like we were taught in school. We actually receive sensory input through sights, sounds, touch, tastes, smells, movement and balance, body position and muscle control.

Difficulty interpreting the input leads to devastating consequences with:

  • Interactions with others
  • Daily functioning
  • Behavior
  • Regulating emotions
  • Learning
  • Social relationships

Stimming is a way to retreat and relieve the pain and overwhelm of your surroundings.

It also alleviates high levels of anxiety felt daily. If you had to spend most of your energy trying to process and block out painful noises, lights, smells, and textures how much focus would you have left for daily tasks, learning and growth?

Stimming helps to refocus and realign. The ability to create order and routine from the chaos of your surroundings is sometimes as easy as spinning in an office chair or rocking back and forth.

It’s soothing. I always found it strange that my son hears things ten times louder than I do and noises like the school bell are painful, yet when he screams or squeals it somehow calms him. But it’s true. Many adults with Autism have told me the same – it feels good.

It’s like a steam pressure valve. What happens when a valve stays closed and the pressure builds up with no release? Yup! Nuclear meltdown…

One of the biggest points I like to make when I train Emergency Responders – who certainly can mistake stimming for drug use, mental illness or non-compliance – is that they should NEVER try to stop someone from stimming unless they are hurting themselves or others.

Imagine telling a blind person not to put their arms out to find their way around a room, just because it looked “weird” or made us uncomfortable. That’s how I view stimming – it’s necessary for my son to function at this time. Now that I’m able to better understand his experience, I’m not nearly as stressed by it – but we DO work on redirection and (sometimes) going to a designated place to stim freely. It helps him identify with his own body’s needs, which ultimately gives him more confidence and self awareness.

When you think about it – how many of you bite your nails, tap your foot, drum with a pen, scratch or even pick at things when you’re stressed? I know I do some of those! Isn’t that a form of stimming? Yeah, we all kinda stim in our own way, don’t we?

Do you struggle with your child or student’s stimming behaviors? Share by commenting below or posting on the SOA Facebook page!

soa minecraft

How Minecraft Teaches My Son Life Skills

soa minecraft

Image courtesy of minecraftercamp.com

In the video game world, I never really graduated past the Atari 2600 that debuted in 1977 and a few of the high-tech games that came with it: Combat, Pac-Man, Space Invaders, Adventure, Kaboom… you get the picture.

My kids, however, are huge gamers. From role-playing games that take months to complete to single-person shooter games, I’ve become well-versed in them all. I don’t play them, but I ask a lot of questions and study the terminology and story lines until I understand and can relate to the world my kids live in much of the time.

Video games really get a bad rap.  They’re seen as mind-numbing screen time that fries brain cells, with a side order of violent behavior. I disagree. That’s like saying heavy metal causes suicide.  Remember that one?

My kids played their first computer games as toddlers; Dr. Seuss taught them matching, spelling, music, coordination, maze navigation, and more. This did not replace reading! It was an additional tool to enhance their learning experience.

Today my kids are part of vast online video game communities, where they have made real-life friends in other cities AND countries!

My son began playing Minecraft on his computer almost a year ago. In this game you can create worlds from scratch, build your own towns, tools, weapons and avatars.  You can play alone or on servers where you plan communities with other people playing the game.

Is it frying his brain, or teaching him valuable life skills? Read on to see what he is learning and let me know what you think.

Math, Resources and Engineering

When you set out to build a structure you have to punch trees to gather the amount of wood needed to build what you have in mind. Then you have to find it in your inventory and turn it into wooden planks or blocks, which are now available to use for building and crafting things.

In order to build a structure that is functional, you must develop math and spacial reasoning skills, figuring out in your head how many blocks will be necessary for a foundation. You can team up with others and create entire cities from your imagination, complete with fountains, statues, stores and residential homes. All without any formal engineering classes.

Science

There are multiple biomes in Minecraft – different types of environments with similar climactic conditions to the ones on Earth. My son plays in the Taiga Biome (a snow biome), the Plains, Jungles, Forest, Extreme Hills, Ocean Biomes, and more.

Here he learns about 61 different biomes with varying geographical features, flora, heights, temperatures, humidity ratings, and sky and foliage colors. Introduced in the Halloween Update, biomes separate every generated world into different environments, paralleling the real world.

He also learns about diamonds, obsidian, gold, iron, and other gemstones, as well as the layers of the earth. He talks about which things can be mined, smelted or avoided, like bedrock and lava. 

Problem Solving

When you begin the game (called “spawning”) you are in the middle of the nothing, with only trees, caves and a few roaming animals. Starting at sundown you will start seeing all sorts of monsters that will attack you, like Creepers, zombies, skeletons, spiders, and wolves. You have to learn very quickly with no instructions that you must survive the night. You have to cut down trees and build some type of shelter, as well as watch your hunger bar. If you don’t find food you will die.

You are not just “reacting” in a game like this; you must come up with a strategy in minutes that includes hunting for food, building shelter, mining coal for your torch and making tools – all from the natural resources available in the game.

Beyond a strategy for surviving the night, you then have to build a world that is sustainable. You can plant gardens, set up farms, build crafting tables, weapons, and tools for both mining and protection against the nighttime monsters. If you die you can lose everything that you’ve accumulated throughout the game – all your resources, tools and hard work!

Research

My son never asks me how to do anything in his game, or when writing a custom script or installing a mod or texture pack (say what?). He has a task or idea and immediately refers to online Wikis, YouTube and forums for tutorials. He learns about the more complex functions like building irrigation systems or functioning items for his house like a fireplace.

Spelling, Grammar and Communication

As I mentioned earlier, my son has met children all over the world via Minecraft servers. He set up his own Skype account and has a network of players at any given time. He speaks, types and builds simultaneously with these friends.

He informed me earlier that when he meets “noobs” he thinks it’s funny that they can’t spell anything. I got a kick out of that – it seems that the longer you play this game the better your spelling and grammar become!

Teamwork

When Skyping with others and playing Minecraft, they are learning to work together to gather food for the community, build stores to sell armor, weapons and food, and engineer new cities.  My son learns how each of these friends communicates best, and he also learns how to settle disputes, compromise, and respect the wishes of others when it comes to how things function in their game world.

I know it seems like kids are “wasting time” on video games. But I have seen my son apply so many of these skills to real life problems or situations and I have been blown away! I don’t think it’s changed him, I think it enhances and sharpens the way his brain already works to bring out his natural strengths. All in a way that he understands and relates to.

If your child plays Minecraft, I encourage you to ask questions, listen to what he or she does and how they’ve figured out how to do it. You will be amazed at the creativity, imagination, problem solving, and overall life skills being grown and flexed through what seems to be a simple game (with really bad graphics).

To see how educators across America are using Minecraft in the classroom, visit MinecraftAfterCamp.com!

Does your child play Minecraft or a similar game? What have they learned from it? What have YOU learned from it? Share by commenting below!

SOA Siblings

5 Ways to Include Neurotypical Siblings

SOA Siblings“It’s not fair! You always talk about Autism, Autism, Autism! You always write about him on your Blog and put his pictures everywhere!”

My firstborn isn’t playing the favorites card, she’s a little sensitive about Autism. Especially since my website, training classes, workshops and marketing materials use stories and facts about her brother as their framework. Sure, I can remind her about all the special privileges she receives as the eldest and the times we go places together without her brother. But that isn’t what she wants to hear. She wants to know that she’s valued, unique, and most of all, heard.

Here are some ways to make sure siblings feel included.

1. Don’t keep them in the dark.

The unknown is scary to children – especially when it’s surrounded by energy that may be tense and anxious. They are extremely sensitive to your feelings, so sugar coating or avoiding the subject of Autism in the home causes disharmony instead of protecting your child’s feelings.

Additionally, you should be open (in an age appropriate way) about what’s behind certain behaviors and that they are rarely, if ever intentional. Impulsivity and Sensory Processing issues can be hard to explain, but there are some amazing children’s books out on the subject of siblings and Autism. It’s a great place to start.

2. Consistent rewards.

It’s easy to get caught up in praising your child with Autism for every mark of progress and milestone. It is necessary. You may be missing the fact that the sibling is also counting every reward… and if the score isn’t evened they will remember.

Find a way to celebrate and recognize every achievement from all of your children.

This can also go the other way: many times my daughter will feel that her brother doesn’t get a just punishment for something she may have gotten in trouble for previously. Situations like that can indeed be a sticky-wicket, as your child with ASD rarely breaks rules intentionally. Unwanted behaviors still need to be addressed, and it helps to explain to siblings that discipline may be unique to each family member but no one is “getting away with it”.

3. Sibling-only time.

Often parenting our child with Autism requires an unequal amount time and energy for that child. It’s so important to schedule regular one-on-one time with your neurotypical child. Whether it’s a ritual of ten-minute blocks each night before bed or a once a week “girls night out” (in my case it’s my daughter), this time is to be treasured together.

4. Perspective and participation.

There are times when I’m truly stumped on one of my son’s behaviors that affect the entire family dynamic. Without sending her the message that I need her to solve the problem, sometimes I ask for my daughter’s perspective. She can throw some fresh ideas on the table that I may not have considered. Again, I never make her participate if she doesn’t want to or cause her to feel that she has to have the solution. She does appreciate that I value her opinion and viewpoint.

5. Support and expectations.

It’s important for siblings to feel that they are not alone in their experiences. There are many sibling support groups to share their struggles and feelings, but don’t force it. In our case, my daughter had a good time visiting one of our local groups but quickly discovered that being with people that focus on talking about her brother still makes her feel like the world revolves around him. She flourishes when involved in groups or classes that are uniquely hers, like her art community and comedy improve classes.

Equally as important, do not expect your child to be overly responsible for the child with Autism. Unrealistic expectations can lay an unbearable amount of pressure on siblings. This isn’t a free pass to skirt all family responsibility; check in often and encourage open communication throughout the journey.

What are some ways that you keep siblings out of the shadows and keep things “fair” in your house? Share by commenting  below or on the SOA Facebook page!

SOA Gifts of Autism

The Gifts of Autism

I was recently sent a tweet from Ryan McTavish, a brilliant and talented drummer who also happens to be Autistic. He asked me to watch his talent show performance video to raise positive awareness for Autism. Being a musician myself, I was beyond blown away by the gifts of this young man.

Before going any further with my thoughts and musings, here is the video he sent me:

Amazing, right?

This video made me think more about the gifts of Autism. Of course I see them in my son every day; I brag about him all the time!

He used to play online games, and then one day he was messing around and pulled up the code for the game. He changed some formulas and scripts and said, “Look, Mom! When I change this to <blah blah blah numbers and letters I don’t understand> the background of the game changes!”

This spawned a creative interest that resulted in him writing his own custom video games, filming his screen while showing custom “tips and tricks” and posting it all on his YouTube channel as a tutorial.

Gifts vs. Deficits

I currently train Emergency Responders and businesses how to recognize, respond to and best communicate with people with Autism. I love this career I’ve created for myself and am blessed to be doing something that truly makes a difference in people’s lives.

The part I don’t like as much is that I have to stay somewhat focused on the deficits and challenges faced every day by those on the Spectrum. I educate on Sensory Processing issues, communication struggles, missed social cues, muscle development issues, and more.

It’s great that I’m bringing awareness and action into businesses and public safety. But what they don’t get to see are all the gifts I experience on a daily basis from raising my son.  They don’t know how kind and good-natured he is, or how innocently he views the world. He marches to his own beat and knows what is in his best alignment.

He sings and hums all day long. He gets on Skype and teaches new friends how to play and build in Minecraft. He hugs the dogs and tells them they’re beautiful. He always kills spiders for his terrified older sister, no matter how much she teased him or yelled at him minutes earlier. He offers the last cookie before taking it. He delights in taking walks and gets excited about Nutella sandwiches.

He sees the world so differently than I do, and I am grateful that I get to go into his world and catch glimpses of his perspective as often as I do.

Yes, I want to help him with his challenges. Yes, I want to help him be more independent. Yes, I want to support and teach him about making it in the world. And I do all of these things. But most of all, I am the one learning from him. And that’s the greatest gift of all.

What gifts of Autism are you most thankful for? Share by commenting below or posting to the SOA Facebook page or on Twitter using #GiftsOfAutism!

autistic adults workplace

Guest Post: Autistic Adults in the Workplace

More autistic adults are entering the workforce than ever before and with it the number of resources benefiting both employees as well as employers is growing. Not only are these autistic adults entering the workforce, they are are thriving, and this may be a direct result of the growing network of support for those with autism. With growing awareness of the different types of autism and more advice it has never been easier to be an autistic adult in the workplace.

  • What Kind of Autism? – The first thing you need to know is that autism is known as a ‘Spectrum Disorder’, meaning that autism can range from high functioning to severe. Sometimes it can be difficult to pinpoint as symptoms aren’t necessarily the same even with the same diagnosis, so it’s always best to have an open flow of communication between employer and employee so that both parties understand the specifics and the best way to handle them. Different skills and abilities will affect how they integrate into the workplace. If communication or social capabilities aren’t strong, autistic adults may prefer a quiet working environment rather than a busy office; some may not mind working with others but may have difficulties with changes and disruptions.
  • What Challenges are Commonly Faced? – While entering the workforce can be a challenge for everyone, for autistic adults they face a tough transition due to communication and social struggles. More common problems faced by autistic adults include:
  1. Difficulties adjusting to the working environment, especially if the workplace isn’t used to the needs of those with autism.
  2. Misunderstanding the emotions of others and responding in an inappropriate manner.
  3. Difficulties understanding instruction and changes in the routine.
  4. Behaviors that are obsessive or repetitive could disrupt the balance of the working environment, especially amongst other co-workers who aren’t used to or sensitive to the needs of those with autism.
  5. Processing sensory matter can sometimes interfere with work performance.

Fortunately, both employees with autism and their co-workers can overcome all of the challenges they may face through training. By researching training programs and support groups, employers can create a working environment of equals. Autistic adults can also look to improve their skills for a working environment the same way. It’s all about working together to create a professional and supportive working environment.

Thriving in the Job – With the right support and facilities autistic adults can thrive in their employment. There are many autism support organizations out there to help autistic adults find appropriate work placements as well as sourcing employers whom understand their needs. It’s important for those with autism to work in an environment where they are not discriminated and that meets their needs and capabilities; so it might be worth considering for an autistic employee to continue in a job skills support program while they are employed, to work out any communication or socialization issues.

This article was written by A. Elliott; a writer with an interest in autism awareness. She occasionally writes for Voyage Care, providers of autism care and supported living.

business woman holding up hands, "back up"

Special Needs Mothers Need Not Apply

My neighborhood has a special Women’s Club that meets regularly and hosts family-oriented social events. I’m going to be direct and get right to the point: I have been asked by several women not to attend any of these meetings because I have an Autistic child.

Bear in mind, I have never brought my son to a meeting, he has never been to a social event, he has never caused a neighborhood “ruckus.” He has Autism. It’s not contagious, scary or dangerous. There’s nothing unusual to stare at when you meet him. Why, then, am I blatantly cast out?

I have been a single mom for nine years. My children and I have lived on this block, renting my home, since our return from Knoxville two years ago. I have never brought a date home (what’s dating, ha ha!), had a loud party, had any questionable visitors, or been in trouble with the law. In fact, having disaster response training under my belt and being a volunteer with the Fire Department, I would be an amazing resource for the community if someone would dare get to know me.

I walk my two giant Malamutes at least twice a day and always wave and exchange small talk with everyone I meet. Everyone waves and smiles back, yet we’re still not allowed into “the club” (first rule of Fight Club is…). Worse yet, I continually get asked why I’m not seen at the club meetings, and am also labeled the “crazy homeschooling neighbor that doesn’t participate.”

This just compounds our history of being kicked out of restaurants, book stores, flights (!), and why no one in my family will visit us. I’ve also been told he’s not Autistic, it’s my parenting that’s the problem. That’s a good one!

With all the awareness work and training I do, why are we still experiencing this kind of response from people?

What should I do?

Well, I have some options about my neighborhood. I don’t have the energy to tackle public places at the moment (I will move one mountain at a time!), but here are my choices:

  • I can whine about how unfair it is and feel like a victim
  • I can say, “Oh well,” and let it roll off my back, like water off a duck
  • I can organize a neighborhood gathering of my own, or request to be a special “guest speaker” at the next one

If I can train law enforcement, EMTs, and firefighters about Autism, why can’t I put something unique together to present to my neighbors? It would be so beneficial for everyone to learn a little more about Autism and my son in particular. This way, when we have a wandering situation (which recently happened!), I can feel like my neighbors have my back rather than feeling like they are sitting in judgement. Sure, they may continue to judge me after they learn more, but that’s none of my business.

Now I’d like to hear from you

Have you ever felt persecuted by a group due to your (or your child’s) Autism? How did you respond? Would you like to learn more about giving a small presentation to your neighborhood? Share your comments below, drop me an email, or say something on the SOA Facebook page – I always love sharing thoughts and ideas with you.

You Hate My Autism!

Some of you may have seen my recent “controversial” question I posted about a startling conversation I had with my son. I asked anyone who felt comfortable to share with me your thoughts and experiences surrounding the topic and I received an overwhelming response! Thank you to every single person who chose to chime in via Twitter, Facebook, or email. I am grateful for your unique perspectives and I’d like to share some of them here.

Here’s the original short post again:

I recently had an extensive evaluation done for my son with a cutting edge, holistic achievement center. The program offered is intense and lengthy but convinced me that my son would be able to reverse most of his balance/coordination/motor skills issues, digestive issues, academic imbalances and sensory challenges.

I asked my son later if this program sounded fun and exciting to him, and if he would like to start. He immediately blurted out, “You hate my Autism. You want my Autism to go away.”

Wow. Not what I expected from my 10 year-old. But I hear him loud and clear.

I am not trying to change who he is at all. I want only the best for him, and felt it my parental duty to merely CONSIDER whether or not a program that can help him open up to his abilities without much of the struggle would be in his best interest. If it worked, of course.

What do you think? I’m not looking for anyone to tell me what I should do, what I want to hear from you is how you feel about your OWN situation.

Would relieving some of the struggles = changing who your child is or who you are in your opinion? Does it mean you don’t accept them, or are you empowering them with new tools?

Is trying to help your Autistic child DENYING who he/she is?

With all of your permission, I’ve chosen some of the key points of some of your responses that I wanted to share.

Robert said:

“I think it’s a tough balance. When people ask me if I want to be ‘cured,’ I have to admit I have a hard time not taking offense. To me, it’s like asking me if I want to be cured of my skin color, Autism being so definitive a part of my identity as a whole person.

Still, are there things with which I know I need help? Of course, but I don’t want that help to come at a cost of who I am. I also don’t want those interventions to define so much of the time in my life that I feel I’m not allowed to be myself.”

You can find more about Robert at simplyrobert.wordpress.com where he occasionally blogs about Autism, but more often about his Autistic interests. (I think it’s a great resource! Love the post on productivity!)

Another Autistic adult reminded me that an important aspect to consider is where the Autistic person might be coming from.  My eyes were opened to some really great points that I absolutely had to share with you:

“We live in a world that is not only ‘not made for people like us,’ but openly hostile to our differences. We are told, ‘Stop rocking!  Stop flapping!  Stop talking to yourself!’ without any consideration of what purpose these activities serve.

When we are bullied or mistreated, WE are the ones sent to ‘social skills training’ so we can ‘learn how to fit in’, as if it’s our fault for being so different. But I want to illustrate the general environment we face, and my point is that it can cause us to see ANY attempt to help as yet another way of squelching the person inside.

There are also people who feel that their Autistic traits are very much part of who they are, and taking them away would also be taking away a piece of themselves, even if that ‘piece’ causes a lot of apparent heartache.”

This reader does various therapies for her children but is careful not to frame them as “helping with Autism,” rather something they do to help them succeed in life (much like going to school or learning their ABCs).

Brilliantly put.

One of my favorite social media friends and fellow bloggers shared:

“Where does my Autism end and where do I begin? This nasty little quandary works just as well when reversed as well. I say your son is brilliant because he’s too young to be so self-aware. I’m both impressed and saddened that he’s already dealing with this one.  He needs more time to mature before tackling such heady stuff.

I confess. I’ve struggled with this one myself. If offered a cure for my own issues, I don’t think I’d take it. I’m not sure how much of me would go with the ‘bad stuff’.  I like some of the stuff that I KNOW a cure would take away.

He has to come to terms with the fact that Autism doesn’t define him.”

That is a fine line that I think must be explored at a pace that is comfortable for each individual.

My close friend in the Fire Rescue Reserve that assists me when I teach my Autism CERT module sent me a heartfelt testimonial after seeing my post:

“For me, through my early teen years after I was diagnosed, I constantly tried to dismiss the fact I had Autism, I felt ashamed, scared, and angry with the fact. At that time in the world little was known to the general public and many doctors about Autism. This in turn made it harder for me to accept. My parents tried many things and none really worked in the end. I had been diagnosed so many times and been to so many doctors I was starting to shut the world out and just didn’t want to accept the fact that I had Autism.

Later on in my late teens and early twenties I found that support group that I had been missing. This group consisted of both friends my age and their families near me. Through the experiences we shared I grew little by little and eventually learned how to deal with my Autism in my own way. These experiences have molded me into who I am today. Today I am finishing my criminal Justice degree. I also am a volunteer with a large metro area fire department which has provided a further opportunity to expand my support group. Through volunteering here I now assist with teaching of the community emergency response team class. This in turn has helped me practice being around people and learning social cues and understanding my Autism. In a big way volunteering has helped reduce the pangs that come with having Autism.”

I always hear great gems of wisdom when I invite his perspective into my teachings.

A wonderful parent told me:

“When my son was diagnosed with PDD, initially, as his Mom and as a clinical social worker, I wanted to get him all the help and services I possibly could! I had heard how early intervention was SO important and he was only diagnosed at age 6. So, I made sure we got an IEP, got him into a friendship group at school and a social skills group privately. I also got him OT to help with the sensory integration issues. I have to admit, although this was helpful in the beginning, this packed our schedule and we all felt extremely overbooked and stressed!

…my perspective began to change. I started placing him in supportive activities that he enjoys and feels help him. We continued the social skills group, but let the OT go (after a year of treatment), and instead, he joined a non-competitive swim team. The swim team allows my son to feel included in a sport, he may never win a race, but that doesn’t matter, to me what matters is that he feels like one of the other boys, included! I have since looked for other ways he can “fit in” with other kids, instead of looking for services specific to his diagnosis.

…we have accepted that our son will be different, it’s who he is and I really don’t want to change that, but, like you I want the best for him and don’t want to see him struggle too much. The older he gets, he’ll be nine this summer, the more I have been letting go and allowing him to learn more for himself about what is helpful to him. I have begun trusting in his ability to know what is best for him, as I don’t have the same issues he has.”

What a great reminder. At 10, I forget that he is aware of what serves him. Not to mention that the children coming forth today really are so much more connected to their inner “GPS” of what they want and need than we ever were!

Another social media friend I admire wrote:

“Tough question. Complex answer. I understand your desire to ‘normalize’ your son as much as is possible. There are things you describe that have real effect on us and our ability to live happy and fulfilling lives. This much cannot be denied.

On the other hand, we are what we are. While my Autism has handed me some wonderful abilities, it has also granted me vast lacuna in other abilities.

Still. . . Autism is not something added to a normal person. Autism is not something removed from a normal person. Autism is a large set of differences between one group of persons and everyone else.

Autism is identity which runs deeper than a name. Autism is what I am, it is the base upon which I build me.

…here is the key: the real indicator here, the only valid indicator, is your son’s voicing of his opinion.

Thank you for that reinforced point. He would not have expressed an opinion if he didn’t feel it strongly!

Another mom shared:

“A parent’s job is to help our children flourish, to become the best that they can be! I totally get that. I too try my best to help my son in anyway I can, without extremes…

As far as helping him with his balance/coordination/motor skills, in the long run, that is definitely going to benefit him. He will be able to take part in more ways when it comes to playing, maybe get picked to play with other kids, so I can see where that would help him.

If it were my son, I would let him have a say in the decision. Ask him why he does or doesn’t want to participate, get his point of view, and take it into consideration. Since it is about him, and it is his Autism.”

WOW! What amazing responses!

All this being said, we chose not to participate in that program. I also chose to check my perspective and make sure that I am in complete acceptance and appreciation for who both my children are when I engage with them. At all times. It has made a difference.

Am I giving up on finding additional tools and resources for him? No. After all I am always looking for tools, supports and resources for my daughter AND myself! It’s a journey. As Abraham-Hicks says, “You never get there. You’re never done.” What I DID give up was the urgency that something must be done to “help.” The inner panic that somehow I am not doing all I can for him.

As soon as I made this shift, this wonderful organization showed up in my inbox. That’s a pretty big wink from The Universe, eh?

Intro to NVC for Asperger’s Teens and Adults

If you are a teen or adult on the Autism Spectrum or a parent or professional that engages with someone on the Autism spectrum, you may be interested in how the Social Skills practices of NVC can serve you.

My new friend Bob Yamtich is an Aspie adult who is trained in a social skills process called Nonviolent CommunicationSM (NVC). He has shared this process at Asperger’s support groups in the San Francisco Bay Area and many people shared how much it contributes to them in their communications.

He is visiting Atlanta and offering an introductory Tuesday, June 19, from 7 to 9 pm at the workshop space of local NVC trainers in Tucker. It will be will be a combination of mini-lessons, live modeling, and active practice will help participants get an introduction to Nonviolent CommunicationSM. Bob invites teens and adults on the autism spectrum, and professionals and parents who work with people on the spectrum.

Some great things included in this workshop:

  • Mini-lessons include distinctions between needs and strategies and between empathy and sympathy
  • What clues can we use, both cognitive and feelings-based, to connect to what we and others care about?
  • Learning self-connection, using logical abilities to hear what is important to somebody, and developing authentic self-expression

So what the heck is NVC?

I absolutely love the description on the site of local GaNVC trainers, Sacred Space:

What is unique about Nonviolent Communication (NVC), beyond other restorative and life-enriching tools, is that it gets us out of our stories — the stories that we’ve already told over and over to no avail to deaf or disinterested ears, without relief. NVC moves us beyond relating what’s happening to us via analysis, blame, criticism, evaluation, or judgment — beyond stories based on verbal violence. NVC helps us address what’s alive in us today … this moment … so that our histories don’t continue to overshadow and dictate our present.

The tools of Nonviolent Communication help us reach the frustrated needs behind strong feelings and the stories. NVC connects us with others through attention to the universal needs that we all share, thereby fostering empathy. NVC fosters understanding, genuine connection and the resulting opportunity to jointly co-create strategies for resolution that can address the needs of all concerned. This practice can help assure that all voices are valued and heard before strategies are formed.

I am very excited to learn more about the connection Bob has discovered between NVC and helping those on the Autism Spectrum be more in touch with their needs and feelings. I know this knowledge will help me in my training programs for Emergency Responders.

If you are local to Atlanta and wish to attend this workshop, please RSVP to Bob at bobyamtich@gmail.com.

Download the flyer here for more information, or to print and share.

I will be posting a follow up regarding what I learned, so look for that soon!