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Thoughts from a Lady with Aspergers

I recently received a really insightful email from a woman with Aspergers (Trudy), and with her permission really wanted to share it with you. I have left the email virtually intact so that the words are direct from Trudy and not edited in any way by me:

Hi! I just needed to write to you, after reading an email I received of this week’s Aspergers question. I am 33 and a mother of 6, I have lived my whole life not knowing that I had a name, "Aspergers" it made sense when I learned about myself, "the condition". I have to say that I am not satisfied with the way Aspergers are being treated, to me it is as if we are in the dark ages, and going about it all wrong!!! I am no expert, no do I have any qualifications to show, but I do know what it is like to be me.

We are no different to gay people who are programmed from a young age not to act gay, humanity has finally accepted they are “different from our condition”, so why can’t the Aspergers people sit and stim, along side a gay man embellishing his gestures? I was raised strict ,and by that I mean, they taught me to be a perfect model human, no sign of my aspergers was allowed to stay, & I have trouble now even getting people to believe that I am different. I do it sooo well, I even had the marriage & kids, the job the big home, friends & went along as a puppet! Not happy, but normal in the eyes of others, my aspie self still inside, but crying, just the way gay people talk about the way they tried to deny that part of them, ….it hurts! & that’s why we stim. Just like an itchy turtleneck jumper & tight shoes make me feel, so does the rules of correct behaviour! (some of which make no sense, like lies or contradictions) & no matter how long you put that jumper on me, I will never get used to it. I will only bare it for so long until I will SNAP and scream, so to with society’s expectations of me!

Yes, let us know about what is normal to “you” , we “need” the info to understand you! PLEASE STOP TEACHING US TO “BE” NORMAL, spend all of your efforts on teaching those around us how to accept us & you will see how beautiful as aspergers can be, & we will stop most of the withdrawing behaviour all by ourselves, WE ARE QUITE BRIGHT U KNOW! …..and we DO have feelings just that they don’t show unless we feel safe to be ourselves & comfortable with the surrounding human input! So stay calm, and just talk to us, we take in phenomenal amounts of info, but we see “more” than u. We see a lot of the inaccuracies in your gestures, as compared to your speech, we hear more, like the speech patterns & vague inaccuracies in your tone compared to what is being said & those mixed messages are what confuses us. We are living lie detectors but u imagine how complicated the world is then! Learn how to be honest around us, we benefit greatly! If u are feeling something, tell us, but don’t be a drama queen. We are very sensitive & to us, it is just like another sense along side sight & touch etc…& we get overwhelmed by it & we cant describe it!

Have u noticed that aspies like using computers and prefer the words without emotional attachments! Telephones are bad as we can still hear the confusing stuff, just like in person, but worse, as we lack the input of a face & gestures,… but u may see an aspie that wont look at u,… well.. they are not comfortable with something that is coming out of u. They detect a lie & are looking away to save themselves from the confusing info. But we also look away from u if we are attempting a lie, as we think that u can see it, the way we can! ..Yes, we need to practice being around u ,but u need to learn to be around us even more!!! as I think QUITE FRANKLY, normals are the slow learners!

Trudy


COMMENTS:

1. Trudy, your words brought tears to my eyes. It has taken me 13 years to see the beauty of my son and his ability rather than his dis-ability because, like you, I was raised to be a ‘good girl’ and to be ‘normal’ and do what was expected of me. Fortunately my son has been good at pointing out the error of my ways and my inconsistencies, and the lies I was telling myself although I didn’t realise it. I am working more and more with other parents or partners of undiagnosed Aspies and helping them to let go of their predetermined social rules. As they do this they start to see the joy and the liberation that Aspies are bringing for us all. You don’t have to be an Aspie to resent social conditioning! Many people are then going on to discover their own sensitive natures that were squashed or repressed in their attempt to ‘fit in’. Many of these non-Aspies also discover their Aspie tendencies - not enough to necessarily be diagnosed with it, but certainly to be able to step further into their son’s, daughter’s or partner’s world. In the process they are healing so many of their own hurts, as I have been called to do by my son. He has needed me to do this so that I can allow him to be who he is, and as I do that, I am also freeing myself. EFT (emotional freedom techniques) is a great help in this respect, and I love helping those whose life purpose it is to bring truth to the planet. ALL Power to the Aspie elbow I say - let’s all open our ears to what they have to tell us and rediscover the joy of being true to ourselves. Thank you Trudy for your courage and your commitment to yourself. love Marian

2. OMG!!!!!!!!!! This explanation is so exact! We have struggled to put our thoughts together for a Cliff Notes version that everyone can understand. You nailed it! Thank you. I will share this with my nearly 100 families on our listserve and all special ed staff at Ocean View School District in Huntington Beach, California. We are grateful!

3. Hi Trudy, I’m an adult with Asperger’s, too. It’s interesting that you compare your experiences to that of a gay person. There are certainly a lot of similarities. And just as no two gay people have exactly the same feelings or experiences, no two Aspies are alike. I would gently suggest that that your letter not be held up as an example of “what we are like”. This is what YOU are like. You don’t speak for me or anyone else. Myself, I’ve had my rough spots in life, but I am learning to deal with it. That’s all we can do, right? Of course, I’m lucky that I have family members (especially my husband) who are aware and understand. I do not consider myself oppressed. I suppose you could say I’m still “in the closet”, because I don’t wear my diagnosis on my sleeve. I have Asperger’s, but I refuse to be defined by it. Another metaphor could be the act of moving to a different country. You are the foreigner; you don’t speak the language, you don’t know the customs. It would be preposterous to expect your new home to change for you, so you learn to adapt. You do what you need to do to survive. You will never truly be the same as a native person, nor should anyone expect you to be…but with experience, you grow, and you learn, and you develop. Because we all do what we have to do to survive. BTW, I can completely sympathise (surprise!) with your rant, because I’ve had a lot of the same feelings too. Do you have any obsessive interests? I find a lot of comfort in mine. Cheers, Vicky

4. I totally agree with what you said. My son is 10 and is told to stop doing this or stop doing that beacause it isn’t right. I’m sick of hearing it. This is the way he is and i don’t want him to change. I love his knowledge, behavors, thoughts and everything else about him. School is the worst enviroment for kids with AS because they are expected to act a certain way. Well too bad because my son is who he is and that is his normal. Get used to it.

5. I just explained to my (currently undiagosed but very confused and unhappy) 14 yr old son that I too have some Aspie traits - but I now try to celebrate, embrace and use them. That only happened after age 40, when I began self-directed health research on my son’s cleft condition after his birth. I was greatly “validated” by getting a few research awards, speaking on a physician’s panel, and receiving a University equivalency to attend the Univ. of Calgary med school and take grad classes in health sciences. THERE IS A PLACE IN THIS WORLD FOR ALL OF US!! and how much happier we are when we find it… thank you Trudy for sharing what it’s like to be you, and peace to you. I too do EFT (see http://www.emofree.com) and it has helped me greatly too; and reading the comments above, I realized I must encourage this unhappy boy to get back to doing his tapping…

6. Thank you Trudy: For sharing what your life has been like. I am raising my 9 yr old grandson with Asperger, he is a very awesome child. He has his moments with the meltdowns we have learned to redirect him. Also, no yelling allowed in the home that helps. We give him his choices on his clothing, TShirts and things he feels comfortable with. Also, we also make him “feel” a big part of our family. Also with anxiety, we don’t disapoint him with things or try not to as he can not cope with that. I try to get a feel for what the world of stimming is to him. we give him his space with that. He does not do that in school. He knows he is different. He is a very bright boy. we encourage him daily. He loves to Read, and play on the computer and games. He is very bright!

7. Thank you for sharing about what Asperger’s is like for you. I too am a mother of 6, also with Asperger’s. My husband shares this as well. We have been persecuted as parents because we do not “act” like other parents and do not communicate in the same manner. The schools see as indifferent or not caring about our children, when this is as far from the truth as you could get! The state thinks that we cannot be good parents because we have Asperger’s. They think that because we do not show emotions “like we should” that our children will suffer and not learn how to be “normal”. Which is funny, since growing up, I always thought I was the normal one, and the others were different!

8. BRAVO! I only learned that I have Aspergers’ after my grandson was diagnosed. I too have always had a way of telling liars from people telling the truth, and it always got me in trouble when I would tell them or someone else ” that is not true”, or “That is someone you can’t believe or trust”. It even happened with an Episcopal Priest who thought at times he was God…and he SAID that in a Sunday School class, but no one believed me when I said he was a faker… until he was found out and defrocked many years after. The same with a church secretary who I saw through on my first meeting,…she was all fuss and bother …and has just last month been arrested for embezeling the church’s money. Sometimes people should look at us as “gifted with insight” , not “disabled!” My grandson is the same, he sees through people who are in positions of authority for the wrong reasons and has had issues with one particular Boy Scout leader for years, because he has motives for his own sons’ advancement and not the others in the troop.He has achieved his Eagle in spite of this man , but it took some doing! We knew when he was repeating the question instead of answering it as a toddler he had some ” glitch” in him, but only when he was a Junior in high school, after all those years of talking to himself and being punished in school for it, did we find out it was Aspergers! Now we treat his ideosyncracies like ” just Jimmy” instead of as a ” condition”. I never knew I was anythingother than ” just me”, but I knew I was different from most other people. Aspergers does not have to be a ” handicap”. I agree more teachers and others ought to learn about us and accept us!

9. I am appalled that someone would equate a medical condition with a life style choice. Shame on you.

10. One line in your comment jumped right out at me: “Also with anxiety, we don’t disapoint him with things or try not to as he can not cope with that.” I can relate - I get incredibly anxious and ‘prickly’ when things don’t go my way. Little things that wouldn’t bother other people, I suppose. With life experience, I have learned to cope. I certainly don’t *like* to, but I do, and I feel I am a better person because I can. After all, disappointment is a part of life and we do ourselves no favours by avoiding it. Hopefully your son will learn this, too. @Stacy - See, that is exactly why I don’t go ’round telling people about my ‘condition’. People fear what they don’t understand, and most people don’t understand Asperger’s. @Sandy - I think you’ve completely missed the point. If you know anything about being gay (and I know a LOT about being gay *wink*), you can appreciate that there are some definite similarities in the EXPERIENCE of feeling inherently different from the rest of society. Some may argue further that homosexuality and autism are neither medical conditions nor ‘choices’, but I’m not gonna go there. To be honest, I think it’s great that everyone’s happy to be different, but acceptance works both ways. Wider society ought to appreciate our talents rather than trying to make us conform, and we need to learn to cope as best we can in a world that isn’t made for us. There are times where we NEED to do things we don’t like to do - like talk on the phone, talk to people, deal with disappointment - and do it in a competent, coherent way. The world is cruel, but we CAN cope!

11. Its Always good to hear from another persons point of view, especially when they may be like minded,I am especially encouraged to see another female aspie since my daughter is now 14 it was very hard to get any comparisions or insight into just how things will go but like Trudy and the other girls here , shes great very challenging ( but what 14 year old girl isnt , if they are not perhaps they are just good at lying …lol) as she always simply tells it like it is but as she is stabilising through these teen years which are hard for any person at all she extremely intelligent and always can think outside the box , can be helpful and loving in a way she;s comfortable with and often is just misconstrued as having a wicked sense of humour , the older she gets the more i learn from her as always she will tell me in no uncertain terms :)other people laugh at different things and so she wants to laugh at an old lady whose hair looks like a fluffy cloud so what ….? im just trying to battle with her to keep it down but i think she is like any other child trying to nestle into society because quite frankly, there are many “normal kids” and think thank god she doesnt carry on like that!!anyway I could waffle on all day but its great to hear from someone who has direct experience ( always the best in my view point) in to life further down the line. well done Trudy and good on you to all the rest of you who refuse not to stop being you just to conform.

12. Wow! Everyone, thank you so much for sharing. I am learning how to better understand and serve my 15 year old boy. I am gaining insight into the reasons and motives for the way he does things. Its like finding the key to a very important room - a room with the most important things in your life that you have been locked out of. My son’s ways have been a mystery to me. But your transparency and forthrightness has helped me tremendously. He was just diagnosed at 13 and since that time I have been searching out resources to help him to maximize the life God has given him. It seems that this message board is the best resource I have found so far. I wouldn’t compare homosexuality with a medical condition either. Yet I do get your point - noone should have to live a lie. What you have shared has given me so much insight into the motivations - reasons for the actions of my son. I have been greatly enlightened and with that enlightenment comes a sense of freedom to let him be himself. I am really starting to get it.

13. This is bang on. I have one question? Are there any women out there with aspergers going through the menopause? I’m struggling double time far more emotinally than physically. Thanks. Heidi

14. Thanks for the input people - this really helps! I find my son with Asperger’s has a wonderful gift of being able to “read” people and I LOVE IT!!! His impressions of people are spot on too!! lol

15. My son has aspergers and he has said the same thing he wishes that people understood what it feels like to be him i think my son is perfect and i fight for him in school to be treated like a person not a child that is stupid he is very bright. You’re message is very clear now if we could just get the people to understand it. After all we all have something different about us or a little quirk that we do.

16. Wow.... What a great explanation.

17. Thank you for this! It comes at the perfect time for me. I've had 2 well meaning friends tell me in the last day that my son will grow out of his asperger's, and I struggle to put in to words why this is not true, and more importantly, why I don't want him to lose who he is by pretending. Fitting in is only so relevant in this world, in my humble opinion, being true to oneself is imperative! 


18. This all makes perfect sense to me.. It amazes me how she can explain it all so clearly.. This is what we need to show people when introducing your Aspie child to someone new.. Hits the nail right on the head. 


19. Beautiful & so right on correct! Should be published

20. Thank you for posting this!! Insightful and very helpful in understanding!

21. So right!

22.  Interesting comments and points of view

23. I feel this heart break daily as I drop my son off at a summer program to "train him" to forcefully make eye contact...to maintain conversation....to sit on grass that makes him cringe....teaching him to be what "society expects from him" rather than teaching the world to embrace his differences. ~Someday.......someday~

24. That's a great analogy! Thank you for sharing x

25.  Nothing like hearing it from the horses mouth. Thanks so much for sharing.

26.  Great story! I love my aspie just the way she is! She is so unique!
 

27. My 9 year old son was not managing in a remedial school environment. There were 12 children in his class, and he couldn't cope with the noise, sensory overstimulation, etc. Every day was exhausting and emotional for him. He wasn't able to learn anything 'academic'.  This year we decided to stop trying to push the academic side until he had more of an understanding of the social interactions used in daily life. He works one-on-one with therapists daily.  So, I ask... He wasn't able to learn in the environment we had him in. He was extremely unhappy. Is it wrong to give him tools to be able to have a two way conversation, and potentially friends?

Please post your comment below...

3 comments:

Anonymous said...

As a mother of an 11 year old son with Aspergers I'm not sure I understand your comparison of Aspergers with people who are Gay. Studies suggest (http://www.ninds.nih.gov/disorders/asperger/detail_asperger.htm) that there is a miswiring in the brain that causes autism/aspergers. As a parent of an aspie, my concern is not to expect my child to change, but to adapt and to take the strengths he has and to utilize them just like any other typical human being. I think as more research is done and more information is shared about Asperger's it will help people understand it better. Bottom line though, the world and society will always have what it deems the 'norm'. The only thing you can change is your behavior and reactions towards that. This is what I aim to teach my son that however unfair it may seem or be, he will need to develop the tools to deal with it and still believe in himself and stay true to himself for who he is (the way God made him).

Anonymous said...

Yes!!! Diversity makes our world beautifully interesting. As a social worker who is asked to design interventions for children with AS, I throw out conventional wisdom by refusing to ask parents to use those silly behavioral modification charts, suggesting instead they celebrate and validate their children's sensitivities, unique view of our world and self-directed learning by joining them in the world of their "favored" topic. Next: Lets learn from the "It Gets Better Project" and offer a campaign to give our teens hope for better days ahead.

Anonymous said...

beautifully written. Im a 44yo aspie mum who was forced 2 'act' all my life, horrible. I have 2 aspie girls & will never try & change them. They are who they are God bless em!

My child has been rejected by his peers, ridiculed and bullied !!!

Social rejection has devastating effects in many areas of functioning. Because the Aspergers child tends to internalize how others treat him, rejection damages self-esteem and often causes anxiety and depression. As the child feels worse about himself and becomes more anxious and depressed – he performs worse, socially and intellectually.

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How to Prevent Meltdowns in Aspergers Children

Meltdowns are not a pretty sight. They are somewhat like overblown temper tantrums, but unlike tantrums, meltdowns can last anywhere from ten minutes to over an hour. When it starts, the Asperger's child is totally out-of-control. When it ends, both you and the Asperger’s child are totally exhausted. But... don’t breathe a sigh of relief yet. At the least provocation, for the remainder of that day -- and sometimes into the next - the meltdown can return in full force.

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Although Aspergers is at the milder end of the autism spectrum, the challenges parents face when disciplining a teenager with Aspergers are more difficult than they would be with an average teen. Complicated by defiant behavior, the Aspergers teen is at risk for even greater difficulties on multiple levels – unless the parents’ disciplinary techniques are tailored to their child's special needs.

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Aspergers Children “Block-Out” Their Emotions

Parenting children with Aspergers and HFA can be a daunting task. In layman’s terms, Aspergers is a developmental disability that affects the way children develop and understand the world around them, and is directly linked to their senses and sensory processing. This means they often use certain behaviors to block out their emotions or response to pain.

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Older Teens and Young Adult Children With Aspergers Still Living At Home

Your older teenager or young “adult child” isn’t sure what to do, and he is asking you for money every few days. How do you cut the purse strings and teach him to be independent? Parents of teens with Aspergers face many problems that other parents do not. Time is running out for teaching their adolescent how to become an independent adult. As one mother put it, "There's so little time, yet so much left to do."

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Living with an Aspergers Spouse/Partner

Research reveals that the divorce rate for people with Aspergers is around 80%. Why so high!? The answer may be found in how the symptoms of Aspergers affect intimate relationships. People with Aspergers often find it difficult to understand others and express themselves. They may seem to lose interest in people over time, appear aloof, and are often mistaken as self-centered, vain individuals.

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Online Parent Coaching for Parents of Asperger's Children

If you’re the parent of a child with Aspergers or High-Functioning Autism, you know it can be a struggle from time to time. Your child may be experiencing: obsessive routines; problems coping in social situations; intense tantrums and meltdowns; over-sensitivity to sounds, tastes, smells and sights; preoccupation with one subject of interest; and being overwhelmed by even the smallest of changes.

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Parents, teachers, and the general public have a lot of misconceptions of Asperger's and High-Functioning Autism. Many myths abound, and the lack of knowledge is both disturbing and harmful to kids and teens who struggle with the disorder.

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Parenting Children and Teens with High-Functioning Autism

Two traits often found in kids with High-Functioning Autism are “mind-blindness” (i.e., the inability to predict the beliefs and intentions of others) and “alexithymia” (i.e., the inability to identify and interpret emotional signals in others). These two traits reduce the youngster’s ability to empathize with peers. As a result, he or she may be perceived by adults and other children as selfish, insensitive and uncaring.

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