What Autism Has Taught Me
Autism is strange in its ability to teach. Sometimes it seems like autism came into my life (through my wonderful daughter) just to make me grow in the areas I most needed to. To name a few things I suffer from: envy, self-pity, a short-temper, mood swings, impatience and fatigue. They are all put to the test on a daily basis. I could (and probably will) write a blog about each one. But today I want to write about one way autism is forcing me to change- caring about what other people think.
I have always been sensitive to how others judge me. Still, this hasn’t necessarily forced me to conform. In fact, in many ways it caused me to rebel. I felt angry in my teen years about how misunderstood and judged I felt. As a response I did whatever I could to not fall by the wayside of the status qou (be it purple hair and black eyeliner or speaking out in class). But that doesn’t mean it didn’t hurt me that I felt so misunderstood by my peers. Since high school I have grown and realized that fighting back doesn’t really help my cause and that the hurt I feel from others’ judgement doesn’t sting any less. I have to admit, it has helped me to move from Orange County to San Francisco, where people tend to be more accepting.
That said, I have always been somewhat of an outcast. Having people bully me in school should have prepared me to be thicker skinned in my adult life. Instead, I think it made me more sensitive. As I got older, I adapted and learned how to be accepted by my peers in order to avoid such rejection again.
But now with autism, I cannot rebel. I cannot conform. I have to find a way to just say F them.
This isn’t easy for me. It doesn’t help that I am 22 and my husband is 21. As it is, people are staring, thinking “How old are they?!” I always figured that my parenting abilities would speak for themselves and that my daughter would clearly be well-behaved enough to have people think twice about judging us.
WRONG. Life wasn’t going to let me get out of this one very easily. It decided I needed to actually deal with this. It gave me an autistic daughter.
So here’s where my story starts: We were at the zoo this weekend and D (I’ll call my daughter that) wasn’t having it. We should have known better than to take her during her nap time, but she usually does fine skipping her nap if we take her somewhere she likes. I assumed (wrongly) that because she loves animals so much, the zoo would be a place she liked. Needless to say, the entire day was a disaster. From the get go she was hair-pulling at every turn. I waited with her at the entrance while my husband went to use the bathroom. She wanted to climb on top of the tables and I wouldn’t let her. BAM, a hair-pulling tantrum started. We just recently started dealing with this by completely ignoring it. That means no blocking from us unless she is right next to us and we can pretend the blocking is an accident. We’ve learned by now it is strongly reinforced by any form of attention. The behavior nearly disappeared completely until one day her smart little brain realized if she did it from across the room I would come over and block her. Now she does it to get me to come to her and try to meet her needs. Meaning, I must act like I don’t even see it if I have any hope of it diminishing. I should have put it together that trying this new method in a new situation during nap time would be a catastrophe, but no way, I missed the jump on that one.
So here we had little D ripping her hair out a couple feet away from me (22 year old too-young-to-properly-raise-a-kid mommy according to bystanders) and me pretending to check my cell phone. One man point-blank stared me down with disgust. It killed me. I wanted to break down and just bawl at that moment. I wanted to scream at him, “Do you have any idea how hard I work?! Do you have any idea how difficult it is to do this?! This is the last thing I want to have happening! I want to stop her from doing what she is doing right now, but I can’t, it will only make things worse in the long run!” I wanted to explain myself. Instead I calmly said, “she has autism, please do not stare.”
The worst thing is, even telling him that was an explanation he didn’t deserve. I don’t think D wants me telling every gawker that decides to stop and rubberneck her personal struggles. It isn’t any of his business, and I should know well enough that it doesn’t matter what he thinks. I can’t help this urge to want so desperately to be understood. To have people know my story and realize I am a good mommy. That I give everything I’ve got to my little girl and more.
Life for some reason is teaching me that I don’t need the validation of strangers, as desperately as I may want it. That I know the truth and that is enough. That those people who are staring and judging and hating, just aren’t playing with all the facts. That I should just let it go.
I don’t know how long it will take for these moments to stop hurting me. I do know that I will have plenty of opportunities to learn to let it roll off my back. I hope it happens sooner rather than later. It is so hard to not feel so incredibly pained by these people and their lack of understanding. I can only looked towards the future and pray for thicker skin to show up soon.
Luckily I have a husband who is the yin to my yang. He doesn’t struggle in the areas I struggle and vice versa. It helps a lot to have him there saying “so what?!” and laughing it off. I know I help him too in my own ways, but I admire him especially in this regard and can only hope to achieve this ability.
Until then, if there are people out there who judge parents like me, please do your part and think for one second, “maybe I don’t have the whole picture here” instead of passing such hateful energy onto to our already overloaded pile of stress. I’ll be working on learning to not care what you think anyway.
I’ll end with this quote: “Is it so bad, then, to be misunderstood? Pythagoras was misunderstood, and Socrates, and Jesus, and Luther, and Copernicus, and Galileo, and Newton, and every pure and wise spirit that ever took flesh. To be great is to be misunderstood.” -Ralph Waldo Emerson
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Kaitlin, what a great, honest article you wrote. I know you’ve read some of the articles I’ve written on my EytanArt site but I don’t know if you saw this particular one where I wrote about how I handled the children and parents at playgrounds http://eytanart.com/preempting-thebullying/. My initial goal was to make myself comfortable and protect my children from being misunderstood and bullied. But the outcome of my strategy was really great because not only did it help me and protect my children but it also educated so many people.
You are absolutely right that having these special children in our lives gives us the opportunity to learn the most important lessons in life that make us better, stronger, smarter and special ourselves. Hang in there. Find other mom’s going through the same thing to hang out with. Once I accepted that our lives were flat out different from others, I started to make better choices about what situations I wanted to subject my son to and myself to.
I am so inspired by the comments written by all the other mom’s and it’s
making me realize that I should keep sharing my experiences to help new
mom’s like you. I’ just wrote down 10 topics I’ll be writing about that I hope will be helpful to mom’s with young children on the spectrum, so keep
your eye out.
Based on everything you wrote in this article, I would say that you are one of the very coolest mom’s around!
Susan @EytanArt
I can definately relate to your experiences and i know how hard it is to rise above the looks and the comments, and not just from strangers Ive even had a very good ‘friend’ send me her judgemental views via text message, now that really hurt and i completely lost it and broke down in front of my beautiful little girl but hindsight is a great thing and if it happened again today i wouldn even acknowledge the text. Life gives u what u can cope with an learns u what u need to know. U r doin a fantastic job Kaitlin and dont let anyone friend or stranger wear u down. As val rightly said” just put my children’s feeling over my own so they get the best I can give them” and our best is always enough at the time its needed.
What other people think of you is none of your business – in that – I mean none of your concern. As a Mother of an autistic child – I was hoping your article was going to touch on the fact that most of the spectrum disorders(s) of autism come with a “built-in” inability of autistics to interpret inuendos, double entandra, subliminal messages, etc. They are quite LITERAL in their interpretations of their environments, spoken language and written word. As a result – they are not affected by what people think of them, and do not have the aptitude to worry about such things. That is one thing I consider the GREATEST GIFT for Autistic individuals. They don’t understand JUDGMENT – therefore it does not affect them. Learn from your Daughter – while you teach her – the really important things in life are not others’ opinion of YOU or your child. It is the love, caring and honesty you share as you do your best to make it though this life together. Good luck to you. Keep trying and F&*K anybody who doesn’t “get it.” You’d think people would have better things to do with their time than judge others. Sucks to be them – be happy you can spot the differences that our children can not – so you can ignore their ignorances. As for our children – THANK GOD they don’t/can’t CARE! They are the true angels amongst us. They do not JUDGE and they Recognize LOVE.
@samcam –
Thanks for the reply, you know sometimes I even feel like parents of Autistic kids don’t fully understand my son and our situation, he is just more to handle than most and has even been in and out of hospitals and residential units. We were crushed to find out that on top of ASD he has an unspecified mood disorder. He attends a special school for kids just with ASD since regular schools cannot accommodate him and he has some of the best doctors around. However it took awhile to get to this point, trial and error and fighting for his rights. He was in the residential programs for his own safety and the safety of our other kids. I hope that never has t happen again, I think he is finally stable enough to live at home and from what we are told he will never be able to live alone. Another sigh. Still I count my blessings for the improvements that he has made. He is a beautiful, creative and bright child. It’s a shame that he has all this potential and will not be able to utilize it all. I hope I’m wrong. I’m so sorry to hear about your husband leaving you and your son. That is juts plain rotten and cowardly…sadly I’ve heard many stories where men leave families when things get hard. As moms we have to stay strong and keep going for our kids. You are obviously a wonderful person and dedicated mother. I hope your son is able to become a happy, healthy and well adjusted adult.
@momof3 – I sooooo hear you. My 12yr old was diagnosed with Asperger’s at 5 1/2 and I feel like my whole life has been dominated by what I refer to as “Preventative Measures.” We’re not as rigid as we used to be but then, we don’t go out a whole lot either – I have no help as my husband of 10yrs left within weeks of our diagnosis. I have a hard time relaxing when we do because I know what CAN happen if I don’t stay a step ahead.
I used to feel I had to explain every atypical behaviour, always worried people would judge me as a single Mom, but not so much now and I pick my battles more now too. So he needed to spin when we were in line at McDonalds, big deal! I just got him to move off to the side where he wouldn’t bump into anyone and then casually scanned the menu board, ignoring the stares. There have been a few people begin to make comments directly to him and in those cases I did step in with a cursory explanation. Well mostly cursory – there was one woman that had started to lecture him on bad manners (he actually is normally very polite) and when I jumped in she was mortified with herself, realizing that as a teacher who had worked with autistic kids, she should have known that his reaction to her touching him as she tried to get by was because of ASD. Unfortunately I was then caught up in a 15 minute conversation with him getting more and more restless to leave, but felt good afterwards about being able to have at least one more person out there be more understanding.
i read this story and wanted to let you know i have a little girl diagnosed with autism when she was a little over 2 . this was heartbreaking . i can relate to you so much she was really bad with her meltdowns at that age but as in our case we found a very loving lady that my daughter just fell in love with she learned to speak and express herself .i was in target about a month ago and had a horrible experience when she melted down extreme anger came over me as one of my older daughters heard a mother say sounds like someone needs a whoopin! she responded sayin thats my lil sister and she has autism i also watched practically the whole store gawking at her i said i dont know what you people think your looking at but shes just having a bad day (loudly) i just wish people these days would just stop and have a lil respect for other people especially when you dont know anything about that child. i also now have a lil boy diagnosed with autism …you just remember you are a good mother and that child comes first and God knows this !!! i am in your shoes and its tough but things can and will get better using lots of repetition and routines
Thank you for your honest story.. My son is now 13, diagnosed with PDD-NOS. How I remember those days. When he was 2 years old he would have the tantrums. I thought they would never end…..I didn’t want to take him out in public anymore because of them. Then, like you, came to the realization that this is what I was given…..and started to realize my son is what mattered the most. I will tell you, your daughter will take you on a journey like no other. Raising my son made me look at my life in a whole other aspect. It really hit me when you said you need to grow in aspects of your life. My son has taught me patience, patience, patience, kindness, compassion, love, respect and most of all gratitude. There is a bigger picture to this disorder called “autism”. People may never understand, but as parents we do……these are our children. And we love them unconditionally. When my son was about 5 years old (just beginning to speak sentences) I would go into his bedroom and he would wake up, look to see who was there and say “Mom, I WOKE UP TODAY”!!!! with this beautiful smile and sparkle in his eyes. I never met a child in my life that was so grateful for his life 🙂 Your daughter will teach you things beyond your imagination.
Hello, I also understand. I’m 66 years old and have a 72-year-old brother and 44-year-old son, with severe autism, so autism has always been a part of my life. My son was more aggressive than my brother, but he started becoming much calmer, when he was around 35 years old. I can take him anywhere now. When he used to have a meltdown, some people would say, “I wouldn’t let my child act like that.” I would answer, “Then, what will you do, when something happens to your child?” If a person said, “How can you handle it,” I would shrug my shoulders and say, “Something happens to eveyone, if we wait long enough.” Both statements seemed to make people stop and think. Keep up the good work. It does get better.
Wow, thanks so much to everyone on here for taking the time to share your stories and give words of encouragement to me. I can’t tell you how nice it is to have the support of others who have been there. I actually wrote this post about 2 months ago now and since then our new technique that we tried out at the zoo has been successful. She occasionally goes for the hair still, but as long as I walk away from her and give her no attention at all, she doesn’t do it. That day was particularly hard because we had just started ignoring it and she was doing it more than usual to try and get the attention she used to get from it. Thank God she has given up on that. She still has tantrums, but I would rather her scream than hurt herself. Again, thanks so much everyone! Hang in there!!
@Jo Lee@facebook – Hi Jo. Addressing your question “Where can I find out more about Aspergers”, you can search on line for websites such as this, and there are also many books available that explain Aspergers and give practical tools and tips to help both you yourself and your granddaughter. I have found the diagnosis of Aspergers to be less of a frightening thing, than a huge help! I spent years wondering what was “wrong” with my daughter. She didn’t have many friends, she had a real lack of empathy, seemed to take everything literally, had somewhat poor motor skills, and just didn’t really fit in with her peers. She was, on the other hand, smart, pretty and funny- although her sense of humor was a little unconventional which worked fine in our family. To me, she was just like her Father, which I perceived at the time to be a bad thing since we were divorced when she was five years old (as it turned out, he too has Aspergers). I loved her with every fiber of my being, but I just couldn’t understand her. Then, while I was helping her raise her own son who also had poor motor skills and talked like a little professor, I saw a talk show about Aspergers and WOW what a difference it has made in all of our lives. Not long after that, my grandson was officially diagnosed and was helped with an I.E.P. at school (Individualized Education Plan). We did have to fight the system for the I.E.P. because he made good grades, and unfortunately the school principle had a “wait to fail” attitude. (If this should happen to any of you who are reading this, start saying the word ‘attorney’ during the conversation. It is a law that childrens needs must be met). My grandson needed extra help with reading and especially standardized testing due to his problems with reading, but math….. he could have almost taught the class himself (except story problems)! A few years later my daughter was officially diagnosed. She was enrolled in a health care occupation Associate Degree program and was doing fine with the text books and testing parts of her studies, but her interpersonal communication skills on her clinicals were such a problem that she was in danger of failing her clinicals. Fortunately her instructer had a daughter with Aspergers and told her if she had a diagnosis to place in her record, it would help alot- I’m assuming with documented diagnosis she fit into the catagory of the Adults with Disabilities Act.
We live about 50 miles from a bookstore, so I ordered alot of books about Aspergers Syndrome from amazon.com. I would immediately recommend Developing Talents- Careers for Individuals with Asperger Syndrome and High- Functioning Autism by Temple Grandin and Kate Duffy, since your granddaughter is a Senior in high-school and is on the honor roll. There are a multitude of people with PhDs out there who are on the spectrum. This book is wonderful for helping both of you enjoy her strengths while also helping with ideas on social and communication skills. The movie “Temple Grandin” will also give you insight into how someone on the spectrum perceives everyday life. The movie made me laugh and become teary in other parts, but I really LOVED it!!! My Aspies are not as non-neurotypical as Temple, but I gained alot of understanding from the movie as well as gratitude that times have changed after seeing what Temples mother was up against. I could go on and on about Aspergers Syndrome all day long, so if I can help you in any way, feel free to message me.- Martha
What a nice blog. I (being the Mom of an autistic son) understand the struggles you face. What they don’t realize as gawkers and starers is the actual strength that we hold in being parents of our children. What they don’t know if how strong our child is in so many ways. What they don’t know is how special our other children are for being siblings that deal with the autism as well. Trust me that you are an amazing mom to an amazing child–let them stare and wonder because beyond all of that lies the truth and that is what you know and believe. This isn’t the path we chose as mothers (and/or fathers), nor is it the path our children chose but this is the path less traveled because it is the harder and more enduring path. Keep it up–just wait and admire her because as she reaches milestones and successes in life, the joy you feel far surpasses anything.
Hang in there girl….we can feel your pain. I have two with Autism…one who is severe and there have been more then one time he’s caused a scene that gathered a crowd of people with their mouths hanging open. I either ignore them or if really bothers me I’ll say “don’t you have something else to do?”….lol!! Our lives are not “normal”, but we do the best we can to help our kids be the best that they are capable of being. Hang in there and keep your chin up, keep a sense of humor and pick your battles and you, your husband and “D” will be fine. : )
You are not alone. I can relate to you in more ways than one. Not only was I a young mother (married at 21 and first child at 22), but I also struggled in my childhood with bullying and all the insecurities that a low self esteem caused. Two of the three children I have are on the autism spectrum and I know what it feels like to be concerned about what others think even though you honestly don’t think they deserve an explanation. You just wish you had a normal child that blended in with the others so as no undue attention would go onto you. I have dealt with these feelings for 19 years now and honestly can say it has gotten easier, but I still have my struggles with it. I just put my children’s feeling over my own so they get the best I can give them. Keep pushing on and remember family is everything and that is all that matters anyway.
I hope you know by sharing your story you are helping to educate those who have no idea the struggles you are facing. Our children do not look as though anything is wrong so that in itself makes it harder. My son is a flapper. He would flap and jump and grunt. People would stare at us and I would tell them he has a “sensory disorder”. I felt I wanted them to know so they would not judge him. He is now 6 and has almost outgrown the tantrums and the flapping. We had some really great OT and I believe it was a big help. I had a similar situation at the SF Zoo. My son was 2 as well. The meltdown was of epic proportion. I know people were looking at me to discipline my son or do something but I just did what I felt was right and kept on. No one knows your stuggles. If you act as though you are in control and don’t care what people think it almost reassures them that you know what you are doing. In the long run you know what is best for your child. More power to you for trying to figure all of this out. I am 46 but that doesn’t mean I know one thing more that you do at 22! You are a good mom, you are doing all you can to care for your child as well as yourself. Do no doubt yourself or your abilities to parent because of your age!! Keep up the good work, your daughter just might surprise you!
All I can say is a heartfelt “Thank You!!!” with tears in my eyes~This was exactly what I needed to hear this morning, as it’s such a struggle for me with my 7 year old daughter with ASD. I have a little saying above my kitchen sink:
” Doing what’s best for your child without worrying what others might think~ isn’t that just what any good parent would do?”
I try to remember it, but it helps to know other moms are going through the same things!
@Kaitlin – i so can relate to you..thank you i have two boys with autism so i know those stares too …you are a good mom who handles more than only others who share this fight know …..keep looking forward there is bright days ahead…melissa
I understand completely, my son is eleven years old and was diagnosed when he was two years old. Somethings have gotten easier but somethings have gotten harder. The bigger and stronger he gets the more dangerous the physical episodes are. I know for us ignoring a behavior does not help (its dangerous and he has hurt himself and other badly as a result), in fact that seems to be the case for most Autistic boys, girls seem to be a different story all together. The best thing for us is to stop the behavior before it happens which means keeping on schedule and, keeping him busy and using positive reinforcement everyday all day. However, if we see him escalating than using redirection usually helps but not always. It’s become harder over the years since we have had two more children and I have less time to dedicate to just him. Sadly, he requires more attention than my one year old and six year old combined. I still have hope for the future though. Good luck and do what you need to do for your family.
It’s hard enough to ignore or handle people judging you when it come you your children in general. Autism puts a whole different respective. My God son is now 16 yrs old and he still has his meltdowns. All that you can do is the best you can do. They say “The will of God will never take you where the grace of God won’t protect you”. Good Luck and keep up the good work.
Hi there! I struggle with my son’s aggression every day. It is VERY difficult to do what we do-ignoring it and not giving it any power with response. Just last night I got to be my son’s punching bag because he couldnt choose which cereal he wanted at the store. He didn’t like that I did not allow him to go home with nothing (his suggestion) and that I would choose the item for him, and he let me know it. Normally at home, I simply step out of reach while ignoring him so as to not get hurt but at the store, I have to remain within reach to block strangers passing by from him so they dont get hurt. Therefore I become the punching bag. And people dont understand that I am protecting them while they give me the looks you’ve described. Go figure! I say we are all heros in our own way. And I think what you told that stranger was beneficial to your daughter because his staring was giving her bahavior a response regardless of it being positive or negative. You were doing the right thing. So don’t put yourself down or try to overanalyze it (which we all do). You reacted perfectly and calmly and as far as I can tell, are doing the absolute best anyone could hope for for your daughter. Well done! Really, pat on the back! GREAT JOB! *standing ovation*
Wow! This is amazing!!! I’ts like you were looking right into my heart! I wrote something similar in my blog. Check it out at:http://findingpeaceinthepuzzle.blogspot.com/2011/08/how-can-puddles-fat-lip-peace-joy.html
Yes, we have been placed on this path, not by choice, but believe it or not, it WILL make us better people! Hang in there! Know that you are not alone! Thank you so much for sharing!!!Blessings!Deb
You are so wise. Raising an autistic child makes you realize their needs are so great that everyone else and their opinion are not important. Everything you said is so true..it stings when people give you, and your child especially “the look”. My skin is pretty thick now, but, it burns me when people judge my child. I forgive them though because as it says in the bible( Im not overly religious) Forgive them Father for they know not what they do. It is up to parents like us to educate people about autism so they can learn tolerance.Keep up the good work!
As she gets older hopefully some of these outbursts will get better!! I know they did for me. I have a 21 year old son who used to tantrum and I would have to walk away or pretend not to notice and yes people gawked at me and stared and yes even commented!! People who have not experienced anyone with autism do not normally understand. Keep you chin up. You are doing an awesome job and it will get easier.
What a good mom. Your daughter is lucky to have a mom who is so committed and aware. So many kids, autistic or otherwise, don’t have parents who are patient and in the moment. As a mom of 3 boys, 17, 15 & 11 months, I applaud you for doing what you are doing for your child. =]
It sounds like you’re doing a wonderful job. My grandson has Asperger’s. I do not think there is anything wrong with telling an audience that the child has autism/Asperger’s etc. The average person may never recognize the symptoms if they haven’t dealt with it and you must admit that it simply appears like a child out of control. Look at it as another way of increasing awareness in the general community.
I know why your fifth grade teacher wanted to keep that beautiful essay you wrote…she saw the greatness in your writings. This is such a heart felt blog honey and you are wise beyond your years. I’m very proud of you- Mom
Thank you both! I really appreciate the support!
It sounds like your mama bear instincts kicked in when that guy stared. That was a great response from you to him. I wish you and your husband the best with D.
Please don’t let these kind of people get to you. You are doing what is best for your child. I have been there. I am the proud mom of 2 autistic boys, ages 32 and 14. Things do and will get easier. There is a saying my mom would tell me all the time, and it is so true…………Don’t believe anything you hear and only half of what you see. I live by that. When I see a mom having a hard time with their child, I think I’ve been there, wish I could help. Keep up the good work, it will pay off .
Sincerely Carol