Friday, September 24, 2010

Follow-Up To Stimming Blogs and An Aspie Girls Question



Good evening, Aspierations Pals!

My last two blog postings focused on stimming and self-calming behaviors. I was amazed at the number of responses I had to my first and second blogs.  Lots of different people chimed in and I just got done responding to all your comments.  I did respond to everyone, I promise!  It may have been out of order but you can use a good challenge, right? In some cases, I made individual posts to respond to you personally because Blogger only allows me so many characters to respond with.  (I think it's a subtle hint to be more concise and less prolix.)

http://aspierations.blogspot.com/2010/09/stimming-and-self-stimulating-behaviors.html  - Part One

http://aspierations.blogspot.com/2010/09/part-2-stimming-and-self-soothing.html - Part Two


Anyway, I wanted to thank each and every one of you for your contributions, your insight, your compliments and your trust in me to feel comfortable enough to share what you are thinking and feeling. You help motivate me to write more and you help inspire me to step outside my comfort zone by engaging with you online.

It may seem trivial to some but most people with Aspergers or autism struggle with social contact and I am a card-carrying member of that bunch.  Your writing a quick comment, sharing of your life or even a word of encouragement on my blog is greatly appreciated.  When I call you Aspierations Friends, I mean that.  Think of me what you will (quirky isn't the worst thing I've been called) but I feel a calling to do this blog and build Aspierations into something that promotes awareness and acceptance and also inspires, empowers and motivates.

Sometimes (okay, almost daily) I wish I had some sort of mentor or life coach to help guide and direct me on a path to follow my dreams in a wise, healthy and financially secure way. I do believe in God and have faith that he's pointing me in the right direction; I just wish I had a little more insight into specifically how to turn my passion and potential into something tangible and not tangential while still being able to pay the bills each month.  I do feel that Aspierations (more than just this blog) is where I need to be making a difference. I want to make major contributions in life, I want to be a positive role-model for my children, I want to help others empower themselves to their own definition of happiness and success.  I have always lived the road less traveled but I'd love to take bigger journeys and braver risks but where, oh where, is my road-map or internal GPS system?  Where do I start my still Unwritten journey?  These are questions I ask myself every day as I make my way.

Regarding stimming, I had just a couple more things to say and I will be doing so below.  I received an email earlier from a loving but conflicted father who wanted to remain anonymous.  He asked questions of me that I think are relevant to the readers of this blog and with his permission, I am sharing both the questions and my response.

Question:  I have one daughter who is 9 and has an Aspergers diagnosis. I think my wife may have Aspergers too but is undiagnosed.  My daughter does a few of the stimming behaviors you mentioned, especially chewing her hair and biting her nails.  It embarrasses my wife to the point where she yells for her to stop. The thing is that my wife does the same thing. I pointed this out and she looked at me like I was an alien and accused me of blaming her for my daughter's behavior. I don't want to hurt my daughter's self-esteem and I don't want to piss off my wife. I took that Aspergers test you had on your website and come across neurotypical.  I am afraid of showing it to my wife but I want to her to get the help that she needs if she is an Aspie.  I also want her to stop yelling at our daughter for stimming.  If I understand you correctly, she may not always be able to control it or be aware of it?  Any suggestions?  Help?

Answer:  (Condensed)  Stimming can happen for a variety of reasons.  Often the behavior is self-calming and soothing.  If a child is seeking sensory input, it can be self-stimulating and regulating.  Children and adults stim for many different reasons including but not limited to:  sensory overload, boredom, social anxiety and stress.  Sometimes it can also have a physical component where a child may have a stomachache or earache but not be able to verbalize their pain so they may do something like bang their head or rock.

I have noticed in personal observation with my boys that stimming is often exacerbated by diet, specifically processed foods, carbs and sugary drinks with artifically flavored coloring.  It can also be triggered in a heightened way by the child feeling sick, hungry or tired.

Some stims are considered more socially acceptable than others and it sounds like your wife may be a bit self-conscious about your daughter's and perhaps her own.  Knowing that your daughter has Asperger's, your wife might already worry about her being seen as "different" or "strange".  I suppose it could be vanity but from what you said, I would guess (and this is just my personal non-medical opinion, so please don't take any of this as set in stone) that she is worried that your daughter may draw unwanted negative attention to herself and may therefore be picked on or teased by kids and she wants to protect your daughter from that pain.  I don't know if your wife was ever made fun of as a girl but I know that I was and it stuck with me to this day.  The silver lining to having been teased is that it helped me develop greater empathy for those that are different and reaffirmed in my mind that I would teach inclusion and acceptance to my own children.

That isn't to say you want your child picked on.  What I'm saying is that you can't always be there to stop it and when it eventually happens as it does with neurotypical and autistic children alike, you can be there as a loving parent to pick up the pieces with empathy and understanding rather than critique and blaming.

Yelling at your child for stimming is something I would not recommend. I realize stimming can become extremely annoying, sometimes gross (don't ask me about feces smearing) and very distracting. Your kiddo needs you as a parent, a friend and someone safe to confide in.  She feels safe stimming around you and that's important because then you have the opportunity to engage in a little detective work to figure out if the stim is anxiety related, physically related, joy related or ????  If something is bothering her, then maybe you can help fix it (I know guys like to try and do that!!!), understand it better or help HER process it better. If she needs to be engaged because she is bored, you can go for a walk together and maybe have a heart-to-heart.  Girls on the spectrum are often very emotional, very impulsive gals.  Remember, that you and your wife were given this beautiful child as a gift from God and that you can help her flourish by regular encouragement and positive reinforcement.  Depending on the stim and its level of safety or social appropriateness, it may make sense to try and redirect your daughter's stimming behavior into an activity that meets her needs but doesn't ostracize her. Since she bites her nails, maybe get her a manicure set and a file and redirect her attention to making her nails pretty instead.  Chewing her hair?  Give her some gum or a hard candy to suck on instead. Remember, she may not even realize she is doing it so to embarrass her or make her feel bad by yelling at her is not going help your relationship.

I also want to point out without scaring you that sometimes increased stimming and withdrawl from social activities may be a sign of a bigger problem.  Asperger girls are often smart but very naive and are more likely to be victims of teasing, bullying and sexual abuse.  From my own personal experience, I can look back at my life and recognize how certain stimming behaviors became prevalent or exacerbated after specific incidents in my life.  It doesn't matter how brilliant your daughter may be, never underestimate how clueless she may be when it comes to things like the birds and the bees and trusting men.  I could fill a book...

It is apparent to me that you love your wife and daughter very much and want to get both the help they need. It sounds also that you'd like your wife to consider the possibility she might have Asperger's without being relegated to the doghouse.  :-)

I highly recommend that you buy the book "Aspergirls" by Rudy Simone, read it and encourage your wife to read it with you.  It is an amazing book about empowering females with Asperger syndrome and the term "Aspergirls" refers to females of all ages.  When I write my Aspierations book someday (soon!!!!), you will likely see a similar theme.  The book will help you understand your daughter better.  If your wife is on the spectrum, it will definitely help you understand your wife better.  If you have relatives involved in the care of your daughter, get them a copy too.  Females with Asperger's and autism present VERY differently than males and sometimes that presentation may make it appear that they are more clued in.  Many women out there live undiagnosed and it is often not until an Aspie woman has a child of her own that is diagnosed, that she gets her own diagnosis.  I lived many years getting by with memorized social scripts, mimicking and learning to mask myself to fit in.  Aspie girls can be great little actresses.



I'm not about tricking people however since you implied your wife might be a bit hesitant to look at her own life with the possibility of Asperger-colored glasses, I would suggest that you ask her to read the book together as a way to better understand and be more powerful advocates for your daughter. 

That much is certainly true and what good mom wouldn't want that?  Then once she starts reading the book, if she is a female spectrum traveler as well, I have a strong feeling that the words she reads will resonate.  If they do, feel free to send her to my blog afterwards and have her read:

Before I knew I was an Aspie, My Puzzle Piece Didn't Fit

The Outing of a Gal With Asperger's, What Did I Do?

and a poem I wrote:

Autism Does Not Define Me

Of course if she wants to take the Aspie test, she can do that too but I highly recommend you having her read "Aspergirls" first because that is much less threatening and if she happens to NOT be an Aspie, you're much less likely to be sleeping on the couch.

I'm always happy to answer any questions you have.  Now I'm not saying I'll know the answer but I'll always be happy to speak from personal experience.  I also have a gazillion reference links and am a Google Aspie-Bot so I can always try to direct you to someone who might be able to help.

*****  I went on a bit after that but it was more personally related and not as generally relevant to the readers here at Aspierations.  I hope that what I shared helped and I thank my anonymous male father friend who wrote in for giving me permission to share with you guys and gals. Maybe it will resonate with one of you too!

I just looked at the clock and realized that between blogging, answering emails and responding to follow-up comments, I've been on my sweet derriere for a long time.  I didn't notice it getting any smaller in the process so it's time to get up and get a little exercise.

Hope to see you guys and gals again!
Thanks for stopping by!

Make this weekend count!  
Karen

7 comments:

  1. Thank you for putting yourself out there. You may not realize it but your blog provides mentoring and a positive example to many. You are relatable, you are approachable. You are non-threatening. You are kind. You make me laugh with your wacky anecdotes. You make me seek my dictionary with some of your verbiage (vicissitudes and prolix) but that's okay because you still write in a way that makes me feel like you're speaking to me personally. I know you have your own daily challenges and seek a mentor of your own and I do hope you find that person. I wish I could be him because everytime I see you blog I want to help you unleash your spirit and energy unto the world. I doubt you realize how powerful your words and spirit can come across sometimes. When you are sad I want to make it all better and protect you. When you are happy I want to celebrate with you. You have a way about yourself that is selfless, charming and mesmerizing. You make me want to be a better person. Your husband and children have a gem. Don't ever let yourself get caught unappreciated. You are the type of woman that probably intimidated and intrigued many men without even realizing it. You may not see that. I do. Guys are complex creatures too and we fall in love hard with women like you but usually we have no idea how to attract you or keep you because the qualities we find so amazing are the ones that overpower us into a flight response. We recognize you are on a different level and that is intimidating. By the time it hits us that women like you are the best thing we could ever hope for, it's too late and you're gone. Do not ever sell yourself short. You are powerful in your beauty and your brilliance.

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  2. Okay, where were guys like you in high school when I was looking for a date to Homecoming or the Prom? Probably running for the hills from gals like me! :-)

    I'm actually pretty speechless. I appreciate the picture you paint although I have to say, I really have trouble trying to see myself that way, especially the mesmerizing and intriguing part. Now if you were to say intriguing-strange, I'd be right on board!

    In fact if you were to be able to find and poll the very very short list of men who have been in my life on a significant romantic basis and not during my 1990-1991 year of utter chaos and confusion and self-destruction, I'm sure the picture they would paint is of an emotionally naive and sometimes smothering, extremely passionate mood-swinging firecracker that could and would go off in an emotional outburst with I'm sure what seemed like no rhyme or reason. I always wanted to "talk" about stuff. I wanted to communicate, work on "the relationship". I had no clue what to do but whatever I tried, it seemed to push away and so inevitably I'd continue my misfit ways and push some more. Doesn't that sound like what every man wants? NOT!!!!

    Ironically, what I wanted so bad I ended up sabotaging but there are always lessons to be learned. The good news is that I didn't taint them from girls forever and whomever they fell in love with next likely ended up being an awesome gal and the greatest love in their life. Lucky for them! (And actually really good for the guy because he deserved someone to treat him right who wasn't so unintentionally overbearing!!) :-)

    I still don't get a lot of times why John wanted to marry me. He asked me just a few weeks after we met. Talk about confusion to me! His best friend married his wife a week after they met and so I think John wanted to follow suit and really didn't know what he was getting himself into. Nor did I. Asking an Aspie gal like me for marriage... he never had a chance to escape! Still, I couldn't imprison him for 18 years so maybe somewhere along the way I figured out how to do something right. :-)

    Okay, I just reread what you said and realized I really don't know how to take a compliment well without trying to negate it, so I'll stop that now and say thank you and embrace it. Admittedly what you wrote overwhelmed me and made me wonder if someone was playing a prank. Assuming it was legit, thank you.

    I do hope you find or have found the love of your life and have told her.

    Aspie gals like me... well, sometimes we need a self-confidence boost. I am 42 years old and am still trying to understand men and why they do what they do. I haven't been so good in that area so far. Maybe by the time I'm 90. Hope it won't be too late! :-)

    Thank you so much again for the compliments on my writing and my character. May you always have the love you seek and pursue the dreams you desire!

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  3. Karen as I said before thanks for your insightful response to my email and for not thinking me a buffoon. I think you hit the nail head on in a couple of areas. If my questions can be of use to other readers of your blog then I am glad to have given you permission to post. I will buy the book you suggested and share it with my wife. I want to make things work with her and our daughter and will also check into those support groups for fathers you suggested.

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  4. Anonymous 2: You're very welcome. I truly wish you the best on your journey. It may be an emotional rollercoaster but if turns out your wife is an Aspie like you suspect, she will likely need you more than ever once realization hits.

    Just as parents go through cycles of grieving when they learn that a child has autism or Asperger's, you may both have a sort of grieving process with each other when you realize your marriage may not be exactly how you envisioned in the past or present. However the good news is you can create a positive vision in the here and now and for the future. Knowing one is an Aspie after years of NOT knowing why one is the way they are can be very empowering and you may find strength, courage and amazing qualities in your wife come out and she can be nurtured and encouraged. I always say on my blog, Come As You Are, Let Your Light Shine. Encourage your wife to be who she is and let her light shine each day and I wouldn't be surprised if she loved you and your daughter with deeper passion than ever before.

    If she is diagnosed, she will likely go through a gamut of emotions. She may want someone to take care of her for awhile or maybe not. I lean that way in instinct and would love to be cuddled and taken care of many days but I'm obviously willing to contribute and do my part. Since I run a business and handle the finances (the former well, the latter not so much), I really don't have a choice but to compromise some of my wishes (as all marriages require) even though often I crave a life where I could stay home, take care of the boys, write and work on Aspierations. Life is not a fairy tale though and responsibilities are important. Your daughter needs you. Your wife needs you and you need them and the support of others who also have similar situations.

    Try to get her to confide if you can in her deepest fears and largest dreams. She may be likely to submit and just let you have what you want or she may seem controlling which often just means she's looking for control and stability in her own life and to not control you.) Be faithful, be patient, be proactive, be funny, make her laugh, make love to her with more passion than you ever have.

    Also, it is possible that your wife will spend a lot of time Monday morning quarterbacking her life with a lot of AHA moments, possibly a lot of regrets and a lot of self-degradation. You being there for her and loving her and accepting her unconditionally will be supreme. In fact if she is an Aspie, you may see over time her starting to shed her cocoon and turn from a caterpillar into a butterfly. I think your wife and daughter are very fortunate to have someone interested and invested in learning about AS on their side. Get plugged in yourself and try to get her plugged into support as well so she won't feel isolated or alone. It's refreshing to see a guy so devoted!

    See my other email for links.

    Best of luck and love to you, your wife and daughter. I'm on your side!

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  5. Karen Thank you so much for being You! I Love you in so many ways and seeing you do this blog sharing the way you are is just one more thing in a long list of the reasons I Love and care for you.

    We have our challenges for sure but we will overcome together. You are my rock.

    I Love You

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  6. Thank you, John. I am glad you appreciate my blog. It is therapeutic for me but more importantly it is part of a greater vision I have to make a positive difference in the world by reaching out to people and promoting awareness and acceptance not just with Autism and Aspergers as that does not define me or the boys, but acceptance of all individuals for who they are, where they are and promoting empowerment to help them let their own lights shine.

    One blog at a time, one day at a time, one Aspierations visitor at a time. Maybe there is a story in my life, whether it be slip, fall or success that can help others. Maybe there is a story for an Aspierations visitor to share or a word of hope and encouragement that will impact me as well. (Actually, I already know the latter to already be true! Aspierations blog friends even though they have never met me in real life have already helped me through some rough times.)

    Thank you for taking time to check out my blog today and seeing what it is I am trying to share and accomplish. I'm still working on the vision but I definitely have the passion and the compassion.

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  7. Karen, I think your advice suggesting that they read Aspergirls together was awesome!

    Great way to break the ice!

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