How much do I hate autism? (read the post before yelling at me)

Based on some of the comments (the nice, the no-so-nice and the plain rude and despicable) that I got when I posted these thoughts for the first time, I need to tell you something:

**Please do not interpret that I hate people with autism, far from it; read the post beyond the title to know what I mean…

**Please do not insult me (especially if you are high-functioning autistic; I heard Temple Grandin -in person- say “…being autistic does not give anyone permission to be rude”).

Kindly READ the post before criticizing attacking me and telling me how horrible a father I am. I you disagree with what I have said, fine, tell me why, but any rude or disrespectful comment will be deleted.

This is a sad and somewhat rambling post, and I apologize for that in advance.

This is the most difficult post that I have written to date.

You see, a very strong aspect of my personality is that with me, what you see is what you get. This, of course, is a blessing, but most times it is a curse. The thing is that it is very difficult for me to pretend. If I am happy, it shows, but the same thing happens if I am sad, upset, annoyed or simply pis***… (Well, you get the idea).

Well, here it goes: I HATE autism.

As the title of the post says, keep reading; if after reading the post you still feel like yelling at me, well, there’s always the “comment” option (but  see the note above!).

I do not think that I have to explain what autism is and why am I interested in it. For the former, there is quite a bit of information available and for the latter, you may want to check out my other posts about autism.  If you are interested, look at the “tags” section of my blog or go here, here or here for examples.

What I want to share is that some time ago, we were watching an episode of “Scrubs”, a very smart comedy mostly about the lives of several young physicians in training. A staple of the show are the daydreams of the main character, Dr. John Dorian (J.D.), who has quite the active imagination. His imaginings are a big part of the “comedy” part of the show, Yet sometimes, they give very nuanced and intelligent lessons and perspectives on human nature.

In the first series finale (long story) they showed a scene where J.D. was imagining his future. One of the things that he imagined was himself being married to Elliot (his dream girl) having children together, etc. My son, Reynaldo (look at my other autism-related posts for background) turned to me and asked something like, “Papá, is it going to be like that when I have kids?

I do not know how I was able to do it (you will see why I say this in a moment), but I kept my composure, smiled at him and told him that I thought so, that he will find a girl that he loved and that he will be loved back. He smiled. It is not the first time that he had mentioned this type of things, he has clearly though about it. He’s even told us the possible names of his future son and daughter. Just like any other young teenage boy, he thinks about love.

A little while after that conversation, we took the boys to bed and when my wife and I were alone, I told her about Reynaldo’s question; I could barely talk, as I was trying really hard not to cry, and I finally was able to mumbling something like “… but it’s JUST NOT FAIR!”

And I then finally lost it. I started bawling, hard. Now, I feel the need to share with you something; I did not even cried that hard when my dad suddenly passed away in 2009, and I loved him oh so very much!

Anyway, I was crying so hard that my wife had to stop me right there (and with reason) because after all, we had just taken them to bed and, well, if they saw me like that, they would be quite upset. I went out to the yard and I cried my eyes out, raising my voice to the heavens and wishing for my son to have a happy life, that he would love and experience the joy of being loved, wishing that, that, … oh boy …

Never more than in that moment I have ever wished to believe in something more, never before that moment I have desired more that there was a loving God that will help him out and grant him the life of happiness that is not in my power to grant, despite how much I may try.

**And please do not tell me that this is God’s way of making me spiritual or that this is God’s plan. Please just don’t.**

I share with every loving parent in the world this desire and hope. Firstly, we all want our children to find that person to love and cherish. We want them to feel joy in their lives. Sadly, there are simply no guarantees, not for them or anyone else for that matter. I do get it. This is life, plain and simple, and I understand that. That said, the second thing that we want for them is a fair chance at life.

And this is one of the main reasons why I hate autism.

It is difficult to articulate my thoughts about this. People can be cruel, no doubt about it and even for us “neurotypicals” the game of love is tricky to say the least. Very few of us have never felt the pain of rejection; this is part of life and growth. How much difficult is it going to be for my son? Would love ever happen for him?

So you see, I absolutely love my boy, unconditionally and forever; however, I ABSOLUTELY, COMPLETELY AND UTTERLY HATE AUTISM. I hate it oh, so very much and for so many reasons, but today I hate it because I love my sweet boy and I see what that monster of disease does to him. Please, pretty please, note that I am not talking about his beautiful mind, his really funny quips, his really insightful comments. He is delightful, plain and simple. My young man is AWESOME and if his autism were just that, I would actually love it.

**And please, pretty please, do not tell me that his condition is a blessing in disguise, that his reality has a purpose in his life, please just don’t, at least not today.**

How can anything that has the potential of harming him be a good thing? How can something that has the potential of making next to impossible for him to just go and chat with someone who catches his eye be a good thing?

I once went to a meeting of a “support group” for parents of kids with autism. Once. In that one meeting a woman stood and briefly told her story about raising three (3!) boys with autism. And she was like “… I am so grateful for my boys’ autism because it’s given me the opportunity to grow…” I really tuned her out as soon as I heard that because in my opinion, I have never ever heard a more selfish comment in my life. You know, it was not about HER, it was about her boys! How could she not worry about what is going to be of them if she is not there for them? I am fully aware that I am judging and I am not proud of it, but here I am merely expressing my opinion of her comment at the time, nothing more, nothing less.

I also know that there is a series of movements, championed by high-functioning autistics that rather forcefully argue for not trying to cure what they do not consider a disease, and frankly, that is wonderful for those who are able to navigate life with some degree of independence; fair (more than) enough! Sadly, a significant fraction of people in the spectrum cannot function as well, if at all; plain and simple.  Without the help of others, they will be in harm’s way, no doubt about it.

Anyway, I am fully aware that I share this burden with every parent of a special kid, with all ranges of severity, and I weep with all of you today. I do not want to give the impression that I think that I am special case; I know that I am only one of many, and I do know that there are many kids who are way less functional than my boy…

It is just that my dreams came true, I am living them… I just want the same for all my children, Reynaldo included.

(:-(

nana papa

Want to see more of the things I write? Go here for some other posts. By the way, I wrote a book!

tfb-cover1

TFB is available as an ebook (Kindle, Nook, as well as in iTunes). The hardcover is available at Amazon and at the Oxford University Press’ website.  There’s even a 20% discount code from OUP.

This is a popular science book, which I hope to be enjoyed by laypeople and biologists alike.

Shoot me a message if you have any questions!

You can subscribe to my blog! Just go to the “Home” page, right hand side.

Facebook page

Twitter: @Baldscientist

For the customary disclaimers go to my “About” page…

About these ads

96 thoughts on “How much do I hate autism? (read the post before yelling at me)

  1. I couldn’t agree more with the whole post. I love my son but hate the autism. It is NOT a blessing. It is NOT a gift. It is NOT something to celebrate. It is a handicap and steals our children’s future. My son has also asked me about having kids someday and I don’t know what to say to him. He won’t be able to drive, count money, or navigate an adult world. Autism is the reason and some want me to celebrate that autism. I wrote a similar post to yours a while back and have taken a beating for it because some adults with autism believe I am a bad parent for not embracing the autism. He is loved but I will always mourn the fact that he has autism.

    http://quirks-and-chaos.blogspot.com/2013/02/celebrate-autism.html

  2. Pingback: Holy cow: Autism and stress | Baldscientist

  3. Thank you for sharing. If I can be absolutely honest … I am SO impressed ( and envious ) that your autistic teenager and you can have a proper heartfelt conversation together. My daughter has autism and she is 19 years old. And to this day, I have never had a conversation with her that went beyond what she wants to have for a meal or what she wants to watch on DVD. To be honest, she does not have the intellectual ability to do more ( at least not yet ). And like you I bawl my eyes out whenever I think of what she is missing in life, everything from having friends to graduating to having a job to having a life partner etc, things that everybody takes for granted. But what hurts me the MOST is that I cannot seem to even have a relationship with her (never mind the Graduation, Job, Marriage thingy). I just want her to be like a typical toddler who can return a smile and desire to know how I am feeling at the moment, to relate to me somehow. Instead, she is constantly in a foul mood and very very easily ruffled. I walk on egg shells around her and I am terrified when she throws a side-way glance at me – usually a precursor to an impending and INTENSE meltdown, which can happen anywhere, anytime and for no apparent reason. I literally beg her to please stop and I try to reason with her but to no avail.

    Yes, she is seeing a doctor for her intense and sometimes violent temper tantrums. And i know full well that none of her behaviour is her fault. But I just want to have a Relationship with her. I want to say she is my child first and foremost before autism or anything else. But honestly, it just seems impossible because i can’t even relate to her as one human being to another.

    I am not sure that i am explaining myself adequately and i am sure that even parents of autistic kids (especially higher functioning ones) cannot relate to what i have just written.

    I just feel that i am going through this alone. That even other parents who have autistic kids do not know what I go through everyday. My heart literally breaks when I wake up every morning.

  4. Pingback: Autism and Despair | Baldscientist

  5. Thank you for this honest article.

    A few weeks back, I was out for drinks with a few friends, and one asked me about my neighbor. I have lived next door to a severely autistic woman for a few years now, and have had a long and heated battle going on about noise and antisocial behavior. Thankfully we have resolved the issues, such as playing the drums after 4 in the morning, going through the bins, moving all of the furniture and some DIY, but for the period it was going on, my life was a misery. One of the guests decided that I was a ‘hater’ and proceeded to give me a full dressing down in front of my friends, informing me that I should have been more considerate and she should be allowed to express herself freely. Sadly this young lady has been put in this flat by her parents who evidently don’t want to live with her (the language they use at her is not nice…), but it has caused massive disruption to the neighbors. Since the issue is resolved, and she confines her activities to the daytime hours, I see no problem, but apparently I’m wrong.

    My closer friends understood what had happened. They went to the bar to order a drink leaving me with the lady who had accosted me. I quietly explained that I did actually hate autism, but that was not the reason I had an issue with my neighbor. She then proceeded to shout at me, and I quietly explained that at 7 years old, I was offered a place at a school for gifted and autistic children. My parents let me go for a day (which I didn’t like), and they never mentioned it again. As I’m a bit older, I managed slip the nets that have been put in place to catch those with learning difficulties, and it was only in my 20’s I had any form of diagnosis. Since I manage to function, hold down a career and occasionally have the odd girlfriend (not that successful!), I have prefer to remain undiagnosed. I’d rather be labeled as odd or quirky, and the reason I loathe autism, is that it reminds me of traits I see in myself, which I don’t like.

    Incidentally, my parents have refused to tell me how I was initially diagnosed and offered a place at the school dismissing it whenever I’ve asked. Myself, I’d rather keep it that way.

    The old family joke is that we are all very artistic, but awful at spelling.

    • Thank you for sharing your story and for your mind words. I completely agree; as Temple Grandin said herself (and I was there in person when she said it) autism is no excuse for bad manners or for being rude/inconsiderate). BTW, stay tuned because I am about to publish a science fiction short story with an autism theme. This is a new adventure to me. I have published quite a bit in science, including a popular neuroscience book, but it is the first time that I try to write fiction. Nice talking to you!

  6. I typed in I hate Autism and your post came up. Thank you for being so honest, so sick of reading that autism is a blessing in disguise and that somehow I should be grateful that my son has this incurable condition because it makes him ‘special’. Don’t lose hope for your son, my brother has high functioning autism and has just got married. When he was younger my mother worried herself sick thinking he’d never meet anyone who could accept him because of all his eccentricities but he has & he’s very happy. Meanwhile my other brother who is neurotypical, very atheletic & good looking has no girlfriend & still lives with my parents at the age of 29 years old. It’s funny the way things work out. :))

    • Yes, life surprises you sometimes. Thank you so much for your encouraging words. What can I say? It is good to know that we are not alone and that other parents worry about the same things… (:-)

  7. Thank you for so much capturing so succinctly so many of the anguished thoughts of a parent of an autistic child. My son is 9 and on the spectrum, and any progress we have made to this point is largely because of the untiring efforts of my wonderful wife. I was blind (perhaps willfully) to his problems early on. My inability to see the problem caused her so much heartache that even today, I can’t apologize enough. It didn’t take long before I learned, though, and I continue to learn and try to deal with the on-going challenges as part of the team.

    My wife and I have been battling the system for years to make sure he receives the correct services. Our deepest hope is that some day, he will reach a point where he may be able to do something, anything, productive. We worry about his future constantly.

    And when we aren’t worrying about that, we have to worry about the present: will he be kicked out of daycare? WIll the tantrums and meltdowns and unpredictability and aggression ever diminish to the point we can take him places without worry? A big nine-year-old turning over drinks at a restaurant, screaming at the top of his lungs. A child dropping to the floor like so much dead weight when you try to check out at the grocery store, or take him to one of his many therapies. These garner harsh looks from a lot of people, but worse is the un-solicited advice on parenting that may come from cashiers and customers.

    And then, there is his sister to try and deal with. She gets the short end of the deal far too often. She lives much of the same isolation that we as parents do, since her friends really don’t like to visit because they don’t like being “attacked” by an overzealous autistic brother who doesn’t realize how inappropriate his social interactions may be. 9When I took her and a group of friends on an outing for her birthday, I nearly cried at seeing how much she enjoyed that afternoon without the stress of dealing with her brother.)

    We have spent years trying to find the right combination of meds that would give us that precious toe-hold so that the behavioral therapies have a better chance of sinking in. Recently we went through a very trying time with one prescription that sent him into a spiral of bad behavior the likes of which we had not seen before. For us, this has been the summer from hell. But that is only from my selfish perspecitve. I can’t begin to imagine what he goes through each and every day.

    In the heat of battle, it is sometimes difficult to separate the behaviors from the child. Rationally, I know that my son is so much more that autism. I want a better future for him. But if that can’t be, I want a better world that can deal with him with more caring and sensitivity.

    Parents of neurotypical children can’t know the deep anxiety and pain felt by parents of children on the spectrum when the child talks about great plans for the future that we know deep down are not likely to ever happen. That is probably the greatest reason I hate this damnable disorder: It steals the future.

  8. I hate autism too!!!!!! I despise it. I am enraged at the unfairness to my son. I too googled “I hate autism”…it was a relief to read your post. I’m glad you asked people to please withhold any platitudes… Sometimes they’re helpful but mostly, for me, they’re not. Thank you for your honesty.

  9. I have autism and while there are days that I myself do not like my autism, I would not say I hate it. You see, I get so many of my streangths from it, and the times that I don’t like it is because people don’t usually give us a chance at much. Things are getting better in that regaurd but please don’t say you hate it. I’m sure if you asked your son even, he might say he doesn’t like it all the time, but he wouldn’t want to get rid of his gifts either. I spent most of my life trying to be “normal” like the rest of the world because so many people said that they could fix me, or they felt bad for me, and yes we can hear you when you whisper, we know how you really feel (saddly). All I am trying to say is, don’t hate it because you think that he won’t have the kind of life that you really want him to have, let him find what his life will mean for him. I have fallen in love twice and both times it didn’t end well, but I didn’t break, i’m still here, and by having those relationships I learned a lot about myself in the process, things that ohters never could have taught me. I love who I am, and I love who God made me to be, I know that I will have struggles my whole life, but, I don’t really care, all I care about is being me the best I can and showing the world who I am. Even if they don’t like it. Love your son, don’t try to fix him unecisarrily(sp) he will be fine, all you need to do is guide him so he doesn’t lose his way, and love all of him, even the autism, because that is a part of who he is. It is not a disease, diseases can be fixed and we by no means need to be fixed. Thank you.

  10. I also hate autism. I have felt so alone in thinking this way and am uplifted to see that maybe I am not the terrible person I thought I was for thinking that way. My grandson is almost 5 years old and I love him more than anything. He has autism and is very high functioning, verbal, pleasant, smart, loving, will snuggle and give hugs, no major phobias or meltdowns, not abusive, etc etc. I know I should be so grateful and, believe me, I am. So much is “right” in his world despite his autism and being raised by a single parent (my daughter) who is a great Mommy along with holding down a full time Air Force career. So I do feel guilty for hating autism and the limitations it puts on my sweet boy. Sometimes I think I am selfish cause just once I dream of having a spontaneous conversation with him where we can just share thoughts. But the worst of all my guilty feelings comes from how I feel when I see others his age navigating life socially so much easier. That’s when I start to feel resentful and angry that my boy has a so much more difficult time. And the worst of it all, biggest guilt and worry I have, is that I don’t want this precious child to think that I don’t adore him as is. I never want him to think he isn’t perfect in my eyes. I have no idea how to manage the polarity between hating autism but love love loving this child. :(

  11. Grr I think I erased my comment so hear I go again. I typed I hate autism bc I had one of this moments where my son’s autism made me cry. I had him attend a jungle island summer camp for a week and today they had a little graduation ceremony. Everything went fine until for the group photo they decided he should move over which he refused and threw a fit. He ended up not being in the big group photo and hitting me in front of all the parents. I literally snuck out of there with my son and cried. I feel so low. First of all at the ceremony I realized all the kids in his class had become friends except for him. I also noticed the teachers all were treating him like he was “special”. I didn’t tell them my son has been dx with mild autism but around the 3rd day when I picked him up I saw that look in the camp counselors eyes that breaks my heart she suspects something.

    My son is 4 and very high functioning. At home with us you can’t tell but around normal kids it’s clear as day to me. It’s just so unfair! Why can’t my son speak like the other kids? Why can’t he have the social grace of.other kids? Why does he always seem to become the outcast? That muther f’er Autism!! Sorry for my language but I hate it. All my son wants is a friend and he tries and tries and it just.doesn’t happen. I wish he could see and understand why. I know why but his mind just doesn’t.

    Another thing I hate is how my husband refuses to believe our son as autism. I have given up on even discussing anything with him about it, it’s pointless. I would like my son to be in a school with kids and teachers that are also high functioning so he maybe feels like he fits in but my husband refuses. I’m the one bringing him to school and seeing the look on everyone’s face and getting the comments from the teachers hinting the obvious. If I say something to my husband about what my son’s teachers said he will flip out and say it’s probably bc I told them about the A so now there looking for it. I also hate how my husband spoils my son like it’s Christmas everyday bc deep down he feels bad for him.

    I hate autism. Why me? Why my kid? I’m sick of making excuses for this and that because he’s acting autistic and so sue me I’m embarrassed. If other people were more understanding this whole Autism could be so much easier.

    • Thanks so much for your comment. What can I say? First, give yourself a break and take a deep breath. It took us some time not to care about what other people think. Also, give your husband a break; we guys process things differently. Things can get better, especially if you get your son the help he needs. You may try talking to a sympathetic teacher and take it from there. Also, a very important thing is to realize that you are not alone. There’s many parents in your situation… Best of luck!

  12. I know that you asked for no comments explaining how autism is a blessing in disguise, but it actually has been for both my fiancée and I.

    It is true that your son has a lower chance of finding love at all than most neurotypicals do. However, it is equally true that his romance, if it does happen, will likely be much stronger and longer-lasting than the neurotypical counterpart (and something tells me that if somebody were to actually collect the appropriate data, autistic people are actually *more* likely to have an extremely satisfying relationship than neurotypicals.). I am myself a sperg, and, though I had my first date at 25, that relationship has turned into something so amazing that our friends tend to come to us for relationship advice. In the 2.5 years that we’ve been dating (half a year of which we’ve been engaged), we have had exactly two fights. One of them happened during one of the events that, statistically speaking, is likely to end most relationships, and the other happened at a very financially stressful point for our company. Neither fight lasted more than 5 minutes. We have other aspie friends who have similarly successful relationships.

    It’s actually fairly easy to understand why this happens, when you think about it. Consider that your son has to think through every social interaction he has. If he can manage to order soup at a restaurant at all, he understands the process of ordering soup at a level that you cannot even begin to comprehend. Beyond that, he’s used to talking through complex social situations with people that he trusts. In a relationship, the person that he trusts most will most likely be his significant other, so anytime things get difficult (because of emotions, financial troubles, accidental pregnancy, eviction, or even one of them getting deported, all of which have happened to us), your son’s most natural reaction will be to sit down and talk it through with his SO. And what do you know, this happens to be what most relationship counselors suggest to couples whose relationship is on thin ice. As it turns out, it works.

    You may wish to watch any of a number of sitcoms (my favorite for this purpose is How I Met Your Mother), and think about every relationship conflict that comes up. Without fail, every single one of them could be ameliorated or even solved by having a short conversation with the other person (or people) involved. So take some time, watch the show, and think about what that conversation would look like if both people could lay their emotions out on the table and dissect them together.

    My advice? Keep answering your son the way you have been; the odds are actually better than you think. At some point, though, there is going to be a conversation that’s a lot harder for you than for him. When he starts looking at potential partners, have a strategy talk with him, and explain (very clinically, without trying to soften the blow) that he’s not likely to have a good relationship with the cheerleader types that his friends are all lusting after, and that he should really be going after the nice, shy, nerdy girls. Further, bars, clubs, and the other traditional places for meeting a partner are terrible choices for him: they select purely for physical attractiveness, rather than the mental connection that he needs. Instead, bookstores and trade shows for fields that he’s interested in are far better choices. The most successful formula that I’ve found is starting a conversation, and if both participants find it engaging, suggest continuing it over dinner.

    Best of luck to both you and your son. (And if you want to talk to me more about this, feel free to email me)

    • THANK YOU SO MUCH!!!! I really appreciate your thoughtful comment. It truly fills me with hope. Everything you said makes a lot os sense and I will certainly use your advice. We are not at the point for him to order soup by himself yet, but we are working on that. There is a movie that I loved that is a little bit about relationships of people in the spectrum. Maybe you’ve head of it, “Mozart and The Whale”… Thanks again for your comment and I hope to keep in touch!

  13. I do not mind being different, but I absolutely HATE the stigma that goes along with it. THAT’, imho, is the absolute worst thing of all.

    It’s impacted my ability to form friendships, socialize, converse, communicate, and to learn. It has prevented me from doing the things I really like doing in much more depth than I presently do them, but that doesn’t mean I’ll give up what I love doing most, because challenges that have pulled my mind and body beyond limitations that were most likely imposed on me well before I even came into this world have proven to be the best thing for me.

    I make my own decisions, do pretty much what I want to do, listen to rock n roll music, though I’m in my early 60’s, and have never, ever really given a hoot in helsinki about the high-flown, lofty, noble causes of the day, although I can and do still form very strong opinions on things that I’m interested in knowing about.

  14. I completely understand. I have been going through the roller coaster from hell for the last 13 years, as a single parent. I love my son more than my own life, I would and try to do anything and everything for him. As a HFA he is constantly batteling the whys, “why did God make me this way?”
    How am I supposed to answer that question when I don’t understand it myself. I just tell him we all have certain issues and we learn to work with them.
    Poo, what a lame answer. :(
    He’s had so much trouble in school and he lashes out when he can’t control his temper. He’s earned 3 suspensions this year alone. However, he is amazingly bright and intelligent but hates any sort of compliment. He is a perfectionist.
    We have been through therapy hell, his current therapist has given up on him, he doesn’t want to talk about anything so she’s told us there isn’t anymore she can do. Wtf?!! ( excuse my language) but this is a SPECIALIST at a children’s autism center! Now what do I do? We’ve been through so many therapists my heads spinning!
    I hate autism too. Not because I’m blaming anyone or anything but because I need help with my struggling child and there is NO decent help.
    I worry about his future and how he will function in the mainstream of life.
    Support groups don’t help me, boo hoo let’s all cry then walk away and feel lost again.
    I applaud you for having the guts to post your real feelings.
    It doesn’t mean we don’t love our children, it means we are worried as hell for them.
    I’m done ranting now.
    Thanks for letting me. :)

  15. As a high functioning autistic (diagnosed P.D.D-NOS, Pervasive Developmental Disorder- Not Otherwise Specified) in his late 20’s, I have nothing but the utmost sympathy for the feelings you have concerning your thoughts on autism, and how it pertains to your son, Reynaldo.

    I certainly have not been in your situation, raising an autistic child, but I will give you my testimony. I HATE autism too! I despise the fact that innocent men and women are born with this neurological disorder, which impairs their social interactions with others, causes anxiety and confusion, and creates delayments in cognitive functioning, and sometimes, in the ability to live independently and function as an adult on their own.

    Your worries about your son having the ability to fall in love and marry someday are understandable. As a loving parent, you want whats best for your child- for them to be happy via being able to find someone special to fall in love with, and live their lives with them. Most people live this way, with a husband or wife, boyfriend or girlfriend, so it is understandable that you would want your son to find love and be happy someday.

    Your hatred of your son having autism shows me how much you care about him, and how much you want him to succeed in life. It is obvious that you love him and want the best for him, and for that you have my respect.

    You’re right, there are many autistics who want to believe in this concept of “neurodiversity”, that autism is just another type of brain function that creates a different lifestyle. That they don’t want to be cured, that they accept their autism, and want to be accepted by others for being autistic and slightly different.

    In my opinion, autism is a massive concrete that can not be broken down, that socially and mentally separates us from the rest of the world, that is predominantly neurotypical. It is something that is branded in our DNA, something that will always be with us no matter what. While very high functioning autistic, like myself, can blend in easily with neurotypicals, many of my autistic brethren cannot, And you are absolutely right, it IS NOT FAIR!

    Autism has made me question a lot of things- my social abilities, my ability to love others, and most importantly my faith in God. God willingly allows all the suffering in the world to occur- He allows people to be born with mental disorders and physical limitations for no feasible reason under our human comprehension. Your cry out to God is understandable- how can He allow your son not to have the same chances and choices as everyone else who is neurotypical. How can he be denied the happiness that so many take for granted. I struggle with the same ideas personally, the concept of a loving God in the suffering of autism.

    I digress. Know that I sympathize with your son’s autism, and know that I hate autism too, and I am not the only one who thinks that. Your pain is understandable.

  16. I just read a commentator on another blog who wrote “If you hate autism, you hate your child,” and I lost it. I googled “I hate autism,” and I found this piece. I think you have perfectly defined why so many of us hate autism and love our children. I have seen people write “Autism has made me a better person.” and I think ‘Gee, I bet your kid is more than happy to miss out on the opportunities that most of us take for granted so that YOU can be a better person. How very gracious of you.’ Thank you for calming my nerves tonight. I also thank the other commentators. There are a lot of us that really get it! It’s nice to see.

  17. I just wanna say I HATE AUTISM TOO. My 4 yr old was diagnosed about a year ago and as i type this im in tears because his school (special needs preschool) called me today to tell me hes being aggressive (not normal for him hes usually very sweet and not aggressive at all) and now i just feel like something may be happening at the school. at home hes fine and he goes to a regular daycare and is fine there as well. im afraid they may be abusive or maybe hes being bullied because hes never acted this way. i feel so helpless because hes verbal but not to the point that we can ask him questions. he wont respond unless its about food or things like a movie or toys or going to his grandmas house etc. anyway just needed to vent. hopefully when i pick him up from daycare he will be in a better mood. i just hate not knowing what he is feeling :(

    • Dear Trish,
      Thanks for your comment… We completely understand how you feel. We had a couple of agressive episodes with ours, which were traced to a change of medications (please keep in mind that I am not a medical doctor, you should talk to your physician)… Best of luck and God bless!

  18. Pingback: Intelligent Design my … behind | Baldscientist

  19. I apologize for the length of this comment. I have trouble narrowing down subject matter.

    I understand the worry you must be feeling for your son. I am an Autistic woman who married an autistic man, but my first marriage was not to an Autistic individual and ended badly. However, out of that marriage I got an amazing son who also happens to be Autistic.

    Yes, it has been extremely challenging and sometimes unbelievably frightening. I have severe auditory sensitivities that affect almost everything I do. I also have misophonia and that complicates things even more. I was bullied, abused, ridiculed and not accepted by those around me. People wanted me to be different. They didn’t accept me for who I was. I doubt they’d accept me for who I am today.

    That said, I did have friends. Only one at a time but they were incredibly close to me and I to them. As an adult I figured out how to make the “right” kind of friends and though I only have three very close friends (not including my husband and son), they are people I could count on for anything and everything and vice versa.

    I was once so sensitive to touch I could not stand anyone laying a hand on me in any way. Now that is not true. Many of my sensitivities have gotten better but not my hearing. I have incredibly sensitive hearing. And though life is still difficult for me in many ways and I do need help with things like shopping and such because of too much sound coming in and too much light, my life is also very rewarding and wonderful.

    My husband, not diagnosed but he’s totally Autistic, is a programmer and a social misfit. Yet he has wonderful friends and he has me as a wife. He is into games and so are his friends. He’s very limited in his range of interests and doesn’t talk very much, but we have a wonderful time with our family and friends and with each other. I adore my husband and he me and together we adore our son.

    My son, he’s got more issues than just autism. He has OCD and panic disorder and that can make it even more challenging, but he’s also had a girlfriend at the age of 18. I can tell you when they broke up (his decision) it just laid him out flat into a depression. I went through the same thing when I went through a break up with someone in the past, like my divorce. But we come out of it. It can take a long time but we do come out of it. I shouldn’t speak for everyone because we are all different. I know my son will be involved again with someone and this time she will be much more suited to his personality. He’s older and wiser. He is now just driving and he’s in his early 20’s. He is also going to be starting college. It took him longer but he’s getting there, we just had to be patient with him and help him by giving him the loving support he has needed along the way.

    You love your son so very much. It is completely evident in your post. You love him so much that you want to take away any of the challenges, the heartaches that can befall him in this life, just as any parent wants to do. But it is in those challenges and heartaches that parts of us are formed to become the people we need to be to be strong enough to manage this life. Though for some of us it is much more difficult than it is for others. I had so many challenges, so many awful things happened to me. So many people who didn’t accept and love me for me.

    I understand why you say you hate autism. I do. I don’t hate it for myself. I don’t want others to hate it in me, either. I want to be loved and accepted. I am who I am. My son is who he is, though sometimes he says he wishes he could will some of it away (the social difficulties, the OCD and panic). But we are all who we are. And the most important thing for me (and again, I cannot speak for anyone else) was when I finally met people who accepted and love me, all of me, even the difficult parts. The woman who covers her ears and swears at sound and cries when it gets to be too painful. The woman who has to have it completely quiet until 11 a.m. every single day. The woman who can’t handle too much change (something I’m writing about for a post on my blog later this week) and can fall apart at the seams because of it, etc… … My husband totally accepts this about me. Doesn’t necessarily like some of the ways in which it happens, but he does accept me and loves me and comforts me. When we have a problem, we talk, we work it out. We work hard on our relationship and we do it because we love each other and are committed to one another 1000%

    But also have good qualities too. I’m also a woman who loves animals, is artistic, writes poetry, loves sunsets and sunrises, the smell of puppy breath, the feeling of my husband’s arms wrapped around me, the sound of my family’s laughter, watching the birds in the feeders, watching my favorite TV shows and spending time with the people I care about and love. I’m also a mom and a wife, a friend and my own individual. I have a great big belly laugh and a great, although, unique sense of humor and a great imagination.

    Life got good when I found people who loved me for me. It took some time because I had to become more accepting of myself because I didn’t like the Autism because others didn’t like the autism. That’s a very difficult weight to bare. That said, I also sometimes can’t stand the things that hurt my son very much. I hurt watching him struggle so much with OCD and the panic disorder, and I hate the way people used to treat him because he was socially different. But his best friend also is Autistic and he is surrounded by family and friends who adore him just as he is. He doesn’t have the “classic” friends people tend to have. His friends tend to be out of his age group, some older, some younger.

    My friends all tend to be much older than I am. My husband, however, is younger.

    Life is full of so many twists and turns and loops and even crashes and burns. We will all experience these things in one way or another. Some of us need a lot more help in navigating the world around us. Hopefully, we are lucky enough to find those people and form our bonds with them. Yes, that can be difficult, but I have to tell you, I am finding that it is more often the norm than not.

    My son does not want children but he does hope to be married someday, and I’m sure he will be. It may not happen in the time frame it happens for so many people, but I’m sure it will happen. He wants friends around who like to program games, draw, play music, all the things he enjoys and I’m sure he’ll find that too, just as my husband has found those people who enjoy these things too and I have found people who I connect with. It’s sometimes amazing to me how it happens and how we just happen upon each other.

    I’m not saying it will be easy and I’m not saying it will happen the way you dream about it happening. But then again, everyone’s life is different and how many children actually do the things their parents hoped they’d do and in the time frame they wanted them too. Life it so different now. There are so many possibilities.

    I find sameness a wonderful thing. So does my husband and son. We are homebodies. We are not go getters. We’re super intelligent but we also struggle to use that intelligence in ways that are outside our interests. Is our world small? Yes and no. It’s big to us but small to others. I like to celebrate a simple life. Life gives us a lot of wild rides and we never know where any of it will lead.

    I hope you will find some relief in finding other people on the spectrum from all levels of abilities on the Internet to read about their experiences and find out the possibilities that could be out there.

    Do I worry about my son if something happens to me? You bet I do. I am really worried. But that’s also why I put things into place. Doctors, support groups, family members, friends… I know it’s not perfect and that’s not a guarantee he’ll be okay, but I can only do what I can do. The rest is going to be up to him and them. Scary? Yes. So I can hear where you are coming from in your post and I can only wish you to feel some relief. It is a long journey and an interesting one. I am so glad you can enjoy those parts of your son that are so positive. It has to be so difficult to be looking from the outside in at this. Heck, I’m autistic and it’s tough for me to do the same with my own autistic son sometimes. It’s not a perfect life but it is our lives and I love it even though some of it is rather bumpy and challenging.
    I don’t live your life and I could never, ever judge it because of that. I do not know what it is like for you or for your son who has autism. I have no idea of all the personal challenges you face or he faces. But I think you are courageous for speaking your mind and for sharing this post. I also think you love him terrifically and wonderfully and fiercely and that is a very, very, very wonderfully positive thing.

    I also get nervous about the firing line that exists “between camps”. People can really try and rip you open when you talk one way or another about it. I think free speech is incredibly important and if a parent of a child with Autism wants to speak freely they should be able to and if someone who is autistic wants to speak freely of their experience they should be able to as well. The spectrum runs such a huge gamut that it is impossible for anyone to speak totally for others on it or for others who are experiencing it from outside it as a family member. That is why everyone should be allowed to have a voice. The minute we start shutting down the voices of the people, not the organizations but the people, we start to have a big problem. We’re the people. You, me, your son, my husband and my son, and the others writing/speaking about this from inside it and outside it. We should be able to have our voices heard and not shut down or attacked. Nothing good comes from shutting others down or attacking them for reaching out.

    I myself would never want someone to try and cure me of Autism because I have too much experience with it. It helps make me who I am. I couldn’t love music like I do without my hearing being what it is. I couldn’t connect with animals like I do without being Autistic, I’m sure of it. I couldn’t write like I do without being the visual thinker I am or experiencing the sensations and lights and colors like I do. There is so much tied in with the Autism that I consider it very much a part of whom I am and an incredibly vital part of who I am. But I am also in no position to tell someone else they have no right to feel the way they do. I know more light needs to be shed upon this and more positive things need to work to the surface, too. I would never tell someone on the spectrum who wants to not have autism that they have no right to feel that way. I don’t want someone telling me that I should be cured, either, because I have a disease or something fundamentally wrong with me. I don’t see it that way at all. Lyme Disease, that’s a disease. I have that and struggle with it daily… but Autism… doesn’t seem like a disease to me. It seems like a way of experiencing the world in sensitive and incredible ways that other people just cannot grasp… and sometimes it can be painful… but also incredible. That’s my opinion of it, anyway.

    Best wishes and good things to you and your family,
    Bird

    • Dear Bird,

      I want to thank you ever so much for your thoughtful and heartfelt comment. Do not apologize for the length of what you wrote. It was wondeful. I also thank you for your understanding and for the gift of sharing some of your experiences.

      Yes, I do love my boy and I’d do anything for him. As I wrote, if aspects of his autism were not dangerous to him, it would not matter to me one bit. I would feel the same fear if he would take parachuting as a hobby, but if he ever chooses that, however terrified it would be again, his choice. He did not choose his autism and as irrational as it is, I sometimes blame myself for it, you see, I am positive that it comes from my side of the family. I do have a first cousin with autism (he is an engineer now) and personally, I was rather shy when younger and i had a lot of difficulty dealing with social situations. Remarkably, somehow I outgrew it and part of my job is talking / teaching to large groups of students (I am a professor as well as a scientist)…

      People like yourself gives me hope. God bless you and your family…
      (:-)

  20. I am with you… my child has not been diagnosed because we don’t want to label her. She is high functioning at 4 years 10 months …makes her want/need known, is potty trained day/night, smiles and will give eye contact when not trying to process a difficult sentence, she will hug and does not have major tantrums, but a lot of whining and anxiety, she will be social but her delay in lang makes it something that causes a lot of anxiety. She goes to regular preschool and can keep up with the work.Her language is the biggest problem. I still hate autism. I hate the ridiculous questions I get asked about her functioning, the assumptions made, the fact that I can’t have a fluid back and forth conversations she is getting there, but it is time stolen. I am not sure if she has it or just a language delay with motor planning\coordination problem. She does minimal stimming. It breaks my heart. I hate the delay whatever it is.

  21. I am with you… my child has not been diagnosed because we don’t want to label her. She is high functioning at 4 years 10 months …makes her want/need know, is ptty trained day/night, smiles and will give eye contact when not trying to process a difficult sentence, she will hug and does not have major tantrums, but a lot of whining and anxiety, she will be social but her delay in lang makes it something that causes a lot of anxiety. She goes to regular preschool and can keep up with the work.Her language is the biggest problem. I still hate autism. I hae the ridiculous questions I get asked about her functioning, the assumptions made, the fact that I can have a fluid back and forth conversations she is getting their but it is time stolen. I am not sure if she has it or just a language delay with motor planning\coordination problem. She does minimal stimming. It breaks my heart. I hate the delay whatever it is.

  22. I completely completely understand how you’re feeling. My two and half year-old son is autistic and I adore him more than anything in the world. But sometimes I cry and I think about the fact that unless things get better for him may never have the joy of being with somebody who loves him in that kind away. It keeps me up at night. I could care less if he never had a job, if he never went to school, if you never spoke a word! I would find a way to support him until my dying breath and make arrangements to make sure he was in care of after I’m long gone. But the one thing I can’t make better for him is that he may never experience loving someone that way and being loved in return and having children that light up his life just the way he lights up mine every day.

  23. Thank you for sharing this. As you read in my note, I have similar feelings … and perhaps moreso be/c my son is so much less verbal than yours. I appreciated the kind words of lazyfrog … indeed, if my son could communicate as well, I would worry much less.

  24. Have you thought that you might be an Aspie, yourself? Aspergers lives in my home. Oldest son is 40, youngest 19. Oldest 3 boys found love and are married, two have children. But even all the Mother Love I can surround them with could not protect them from such trauma as a drunk driver crashing into one, or intasaception, or Dear Son III’s motorcycle crash that had him in trauma center for almost 3 months and rehab hospital for another 3 and wheelchair and … but he walks and supports his family and his youngest child, now almost 3, was born on my birthday, or oldest’s son’s wife needing a hysterectomy at a young age and getting Lymes disease, or the teenage angst and the anguish that we all experience daily when recognizing the ugly in the world. Ist Daughter In Law didn’t find her niche until in her 30s. She is now a veterinarian in animal emergencies … and I’m pretty sure and she is Aspie, too, though a Dx at this point is moot. Anyway. Asperger’s, like Autism is unique for each person and is considered to be on the spectrum. My boys are some of the most empathetic and nicest people that exist anywhere. But like you, they (and I) are not deceitful and are as fair and loving and kind and generous as is possible for human-being to be. And they are all gifted…only the youngest did not test gifted. But he is, none the less. Not a savant. And much of the information about spectrum so called disorders, and Autism is definitely disordering (hahahaha) is wrong for everyone except maybe the one person that was documented. Anything neurological is unique to each person experiencing whatever it is. Dontchathin? Not gonna edit, as I might delete. Sorry I didn’t read this post when you wrote it. I was able to homeschool Dear Son IV, after awful kindergarten and worse 1st grade which ….well another loooong story. If you have any specific questions ( general ones are too hard for me) I will be happy to try to answer. It seems that co-morbidities are what really gum up the works. I haven’t read all of your blog, but I suspect I admire your wife, already, a great deal. Does she have a blog? Or maybe no time for a blog yet. This having some time (but not much and never conveniently arranged) is still new to me. I’ll be 64 in September. Your children will have hard times. Some worse more painful times than others, but they are blessed in ways that many (maybe most?) children are not. They have a loving core family. You are all a rare blessing.

  25. Let me just say that, as far as my personal experience goes as an autistic adult, you needn’t worry about your son’s love life in the future, or his interpersonal relationships. Everyone for the most part gets a fair shake at love. In your post, I see a lot of passion, and a lot of loving concern. But I also see a lot of unnecessary hand-wringing and hair-tearing. Your son doesn’t necessarily communicate poorly or empathize less. He communicates differently, and empathizes in different ways.

    I had a mother who absolutely could not come to terms with the fact that I simply do not relate to her or other matters the same way she does. She took that to mean that I did not or could not care at all. She told herself that I don’t see the meaning behind silly small talk or underlying emotional subtext and subtlety in conversation because I just didn’t care about anyone’s feelings. I got the same treatment from my teachers in school. In my reasoning, I didn’t see the meaning behind silly small talk because silence is comfortable. If there’s nothing to say, don’t pollute the air with sound. There’s plenty sound there already. Listen to it. I don’t use underlying emotional subtext because if I have an emotion to convey, why would I want to make someone believe otherwise or convey an emotion in a way that makes it unclear, or could lead people to perceive the wrong feeling? I don’t use subtlety in conversation because conversation is used to entertain and to convey thoughts and plans directly. Why be indirect? Such things, for me, are reserved for poetry and song. That’s where speech’s mellifluous qualities belong. Words for the sake of beauty, words for the sake of use, and words for the sake of filler are completely different things. Many people in my life assumed this meant I didn’t care, or was stupid or slow, or was cold-hearted. And I’m not. I never have been. Though my mother and many other “nurturers” (I use this word sarcastically) abused me because they decided this meant I was just a detached shell with some small non-human being inside, trapped in its own universe all alone.

    This kind of experience was painful, and not at all conducive to the development of a kind heart or acceptance of self or trust of others. Your son is lucky to have someone who loves everything he is, and who has open arms instead of a cookie cutter that they keep trying to cut him to the shape of. But somewhere along the way, I met a man who was weird in all the same ways as me. And we decided life would be much better if we continued being weird together. And so he put a ring on my finger with a stone of opal, which is weird because it’s a stone that behaves like a liquid and a wood, and it needs a bit of maintenance to keep it beautiful. It was to symbolize the fact that we’re ALL weird, and we’re ALL beautiful in ways that can only be perceived by some. And we DEFINITELY all need a little maintenance to keep us shiny and beautiful to one another. As the Dr. Seuss saying goes, “We’re all a little weird. And life’s a little weird. And when we find someone whose weirdness is compatible with ours, we join up with them and fall in mutual weirdness and call it love.” This is absolutely true, in my experience and in that of everyone I know.

    You may hate autism. I don’t. At one time I hated the difficulties it sometimes caused, I hated my mother’s narrow-mindedness and my teachers’ inability to put their prime directive of teaching before their frustration (my English and reading teachers LOVED me to death. My math teachers seemed surprised to find that such levels of incompetency existed outside the realm of unicellular organisms). But I definitely don’t hate autism. That’s personal for me, and I know it. I’m not trying to persuade you to think a different way there. But I am definitely going to reassure you that you don’t need to be worrying about your son’s love life or interpersonal relationships. He’ll find someone who is just the right kind of weird.

    And as for friends, birds of a feather really do flock together. Even the types most inclined to isolation and solitude. A trend I’ve noticed with myself and other adults I know with autism is that we will often never be “popular”, and our circle of friends will likely not be wide. But it will always be tight-knit. I have few enough friends to count on one hand, maybe two. And they would give me a kidney if I needed it. As it is, all I need is someone to watch television shows with, and someone to play Dungeons and Dragons with, and someone to obsess about flowers and plants with, and someone who knows that I sometimes just need a shoulder wearing an absorbent shirt so it will soak up all the tears. In return, I will be all these things for them. He’ll get that. I’m sure of it. :)

    • Let me start by thanking you your your understanding and for your kinds words. Yes, I love my son and everything that makes him who he is, and I only worry about autism because of his safety at all levels.

      That said, your comment made me think, and even better, it gave me hope. I do tend to overworry (is this a word) about things… That said, I do not think that I’ll ever stop worrying about my kids…

      Your story is very touching and believe me when I say that I am very happy for you and I hope that something like that happens for my boy. God bless… (:-)

      • I’m glad I could give you hope. That’s something we all need and can never have too much of! I suppose that the best way to sum things up is to say that (and I’m sure some members of the autistic community would say I’m making an egregious generalization) autistic people can be kind of like society’s Vulcans.(pardon the Star Trek reference. I’m a nerd.) Vulcans don’t necessarily lack emotion or sympathy for others. They just don’t subscribe to traditional cultural subtext, because it’s illogical. It’s logical to think that, if you want a point to get across so that people get the right idea, you should be direct and not mince words.

        I don’t want to sound sanctimonious or give too much unsolicited advice, and this is the last time I’ll bother you with my really wordy responses, but I do have another tiny bit of advice:

        Another quality that can have damaging social effects is sensory violations. Some autistic folks don’t like certain lighting, sounds, movements, textures, eye contact, etc. Everyone’s quirks are different, just like the rest of the world. A lot of these sensitivities can be accommodated on a personal level, so you can help your son figure out ways to fix some discomforts on his own. Personally, I don’t like loud or sudden noises, or people coming up and hugging me without warning. That doesn’t mean I don’t like parties or affection. I usually find a spot in a room where I can see anyone coming up to greet me, and I can be ready for their approach. As for loud sounds, I just bring earplugs with me everywhere I go, so I can use them if a siren goes off, and I can comfortably enjoy concerts and parties and such. Clothing comes in all colors and fabrics, so if a certain type of fabric feels offensive, it’s easy to avoid it. I buy 2 or more of some pieces, if it’s something I know is especially comforting to wear, so if one gets old or tattered, there’s a spare.
        A common dislike in the autistic community is prolonged eye contact. This can be tough, since most other people like eye contact, and avoiding it can make people think you aren’t listening, or you’re being dishonest. If someone doesn’t like to maintain eye contact while talking, they can find another point on the face to focus on, like the nose or the eyebrows, or the hairline. Then they can avoid the discomfort of prolonged eye contact while also avoiding putting off someone who DOES prefer eye contact. Worry objects are good too. When I was about 20, I had a fleece pillow that would help me feel less anxious in large crowds. I knew that an adult walking around with a little pillow and rubbing it with my thumb looked a bit strange, so I made a very small one, about 2 inches across, to put in my jacket pocket so I could feel the soft fleece if I got uncomfortable. I also am comforted by blue, so if I’m having an insecure day, I wear loose-fitting soft blue sweaters, with long sleeves I can pull my hands into if I want. They look nice and feel nice.

        So there are lots of solutions to find a comfortable middle ground. It might help him in social situations to find some little halfway points. It REALLY helped me, and I’m much more outgoing and less easily put-off by social interactions or large amounts of people than I used to be. I also feel like I am judged less by others, not that it should matter. Everyone tries not to care what others think, but it’s harder than anyone likes to admit. I know I’ve talked your ear off about this, and I’ll quit bugging you. I just remembered how much those little tools and routines helped me forge strong relationships with people and how much it helped me deal with the little things that really set me off but are hard to avoid in everyday life. So maybe try finding some of your son’s biggest triggers, and his biggest comforts, and make little “social-size” versions of them. It did/does wonders for me. I hope this helps! :-)

        • Thanks again for your comments and by all means, keep commenting, it is a pleasure!

          Nothing wrong with nerdiness, least of all Star Trek! You may like my post “The Klingon Shrew”…

          Yes, we use many of the techniques that you mention… The earplugs, etc., and we’ll try some of the others… Thanks again!

  26. Thank you for your thought. I get it. My husband is a widower. When I married him I also vowed to care for his severely autistic child as well as his other 2 children as I would my 2 children. Yes that’s 5 kids between us, all the time. I love my step son. I love him like my own. But I hate autism. I once had someone tell me “he’s in good company, Einstein was autistic,” and the whole “autism is a gift.” Bs too… Yeah, would those words comfort you if it was your child eating his feces, slapping his foot repeatedly against the floor till the skin is split and bleeding, choking out your daughter over a tv show. And then we can see the glimpses of who he could be… The child that unexpectedly his and kisses you, cuddles up in your arms, says “I love you”. Some parents say they wouldn’t change their autistic child for anything in the world, I say I would do anything to give him a chance to have a “normal” life

    • Exactly… For every “Einstein type-Autistic” there are many more that are not able to live up to their potential… And that saddest thing is that they have the same feelings the we “normals” have only amplified… Thanks for your comment… (:-)

      • To echo and early comment, the further up the spectrum the stronger the hate for autism, not the child, for autism and what it robbed you of. To hear countless doctors, therapists, teachers, even family members ask us if we have ever considered “placing him” doctors telling us basically there is nothing they can do to help… It’s maddening… The parents that bad mouth your thoughts obviously have never been in your shoes… I agree, what’s the most heart breaking is knowing deep in your heart that your child won’t have a chance at life, at least as we know it… And then of course there are the fears at what will happen to them when we are gone… I lie awake at night crying over that

  27. My baby brother has autism (hell why am I calling him a baby, he’s almost fourteen and taller than me) and sometimes he will flash a look in his face that makes him look like a typical kid. It’s only then I see what he could be like. I love him with all my heart and it makes me cry to think he will miss out on normal life experiences like getting married and having children. So I completely understand what you mean when you say you hate autism, but love your little boy.

  28. People who don’t live with it will never understand. So just ignore their rise comments. They are the same ones who stare in the store, pass judgment on our parenting skills when our child has a meltdown, the same ones who exclude our kids from cub scouts, soccer, birthday parties, and yes…. even church.

    • I know… Thank you for understanding…Also, the commenter implied that he/she in on the spectrum and may have taken offense a little too fast, without actually reading carefully what I said. I do understand his/her defensiveness up to a certain point, but I stand by what I said. If my child wouldn’t be in danger in the absence of a caregiver, I would not care about autism one bit, as he is delightful… I must say that it hurts when people casts doubt on my love for my son, but I have nothing to prove… (:-)

  29. I honestly don’t like it when people link hating autism with hating the person. They’re completely two different things. To me it’s the same as if I had to love the cancer that’s eating up a family member’s liver because otherwise it’s like hating the family member…seriously? Is it that hard to see?
    Autism has a spectrum and if you’re lucky enough to fall under the functional side of it, man, love it! Be proud!! Wear your Sunday shirt about it!! You will struggle (more or less), consider it a gift; but if someone you love so much is born “at the other end” of the spectrum, at the side were no words are spoken, sleep is provoked with all kind of drugs, epilepsy is part of the game, your friends don’t understand, he doesn’t have any friends and you know you wish him to die before you do, so you know he will be taking care of until the end, then you HATE autism with all your being. I do and I LOVE my brother. Now, I am aware there are plenty of shades in between these two extremes the functional and the dependent.
    I’m not a parent, I am a sister. I left my life in the USA to take care of my brother when my mother passed…He’s in an institution that lacks therapies of any kind. They treat him well and keep him clean. He’s 44 and every weekend I try to give him a bit of the happiness he lacks the rest of the week. He’s non-verbal and at one point he was able to draw and paint wonderfully until drugs took away “his gift.”
    There isn’t one day that goes by that I don’t blame someone, something, the cosmos, God, my parents for (and here comes the selfish part) depriving me from having someone I could talk to, workout with, walk with, fight with…someone who could tell me how wrong I am about something…anything, or (the unselfish part) hating every time he looks at me like wanting to tell me something, but not being able to do so, and this happens every day. He can’t express any pain. I have to settle assuming his laugh is happiness, when I really know it is more a stress release. I remember when he was 18 mopping up the blood from the floor because he would hit his head against it…I still don’t know way…I remember having to hold him on the chair so he wouldn’t hit his head. I remember my mother crying and the pool of blood on the floor. And yet, today I love him more than anything in this world and that loves continues to grow as the hate for autism enhances too.
    So, yeah, I totally agree and by no means I can compare the love of a father with the love for a brother, but autism at the lower end of the spectrum is something to hate. I imagine, (because I don’t know), the closer you are to the functional end, the lower the levels of hate. Either way, hating what’s taking away your son, your cousin, your sister, your brother it is NOT hating the person; it is hoping to give a fair chance that we all had and they didn’t.

      • I Love my son more than anything…but honestly, i still wish he was normal/typical….he’s 17 now, a nice ,great,funny kid..but i will always worry about him,,,when i leave this earth….and it is torment for a parent to not be able to help their child…and wonder if they will find love,be able to work,drive and just be happy…

  30. You know it’s not a disease, right? It’s also genetic, which means it could be from your side of the family. I see autism as a gift, we are all different in many ways, and all special. You think your life is hard? I feel sorry for your child, who has such a heartless parent who thinks more about himself.

    • @Natalie- are you kidding me? Autism may be a gift for some. But I’m sorry, do I think the fact that my step son can barely ask for basic needs at the age of 9 is a gift? No. The fact that he still wears a diaper at 9 is not a gift. The fact that he can’t express to us when he is in pain and where, is not a gift. The fact that he will never live an independent life is not a gift. The fact that he is not aware of the simple dangers around him is not a gift. I could go on and on. My stepson has many gifts. Autism is not one of them. And the fact that you are so judgmental about the parent who wrote this blog, speaks volumes about your character and personality.

    • @Natalie:
      Thank you for your comment. Kindly re-read, strike that, **read** the post carefully, as I cannot believe that anyone who actually read my post can logically think that it was about me. I already said what I wanted to say; I will not say it again.

      Before I go on, here’s some education. All diseases/conditions that are not caused by bacteria, viruses, parasites, toxins, etc., are genetic in nature and influenced by the environment. Even in the cases above, whether a person is resistant to a certain virus for example is largely determined by genetics, so there.

      Also, if you must know, yes, we do have autism in both sides of our family and more than once I have wondered if some aspects of my own personality originate from it. It is ironic that you just threw the comment “…it could be from your side of the family…” in a manner that I perceived as a veiled way to insult me. Odd comment from a person that is ostensibly “defending” the condition!

      As I do not know your specific perspective on this matter my last two comments will try to address each of the two most likely possibilities.

      If you have autism, God bless your mind and body and be happy and grateful, because you are in the “right side” of the spectrum in the sense that you are certainly able to take care of yourself. I have met Temple Grandin twice and had the opportunity to chat with her. She is another wonderful example of “ending in the right side” of this spectrum.

      On the other hand, if you are a parent, go to the part of my post where I narrate my experience with a mother that was grateful for her three autistic children. What’s going to happen to their children when she is not around or unable to help them? Not to care about that is the true heartless attitude.

    • Wow Natalie. What makes you the expert? Do you have a child who was perfectly healthy, talking, communicating, pretending, interacting,until a dtp vaccine caused seizures in the doctors office, and your 2 year old child lost ALL of his skills and ALL of his language, and retreated into his own world right then and there? Oh, but it’s generic….I just imagined all of that and so did the doctors. Keep telling yourself that. Believe it or not, it is possible to love your child but hate what makes life lonely for him.

  31. Oné. I live in purposeful denial on all the things I see that make my son suffer because of having this condition. This morning before my husband picked him up at his grandparents he said” well there goes the line of “Metzgers.” What are you saying? I said. My husband said thinking he was being cleverly sarcastic “well he will never marry, etc”. So I said to him thanks for turning my stomach inside out. I really need to think about this right now. You see our son is the only child we have and will have as we married in our mid thirties I thought of you. I thought of all of the lost possibilities. Then I told my husband you don’t know that for him. No one knows. Let me keep trying for him.

    I keep telling myself I want to live until I’m at least 80. Hopefully I will die knowing he is on his way to happiness.

    I say this as my arm is full of black and blue marks from those killer bites my son gave me -you know, the kind where he latches on hanging- kind of bites and a bruised clavicle from kicks because he has gone through so many changes (albeit summer vacation time and freeing him from any schedules thinking he would love that) that his system overloaded from the abyss of not having a schedule. It was so bad for him last Wednesday that I had to remove him from the entrance to In & Out Burger (favorite and most natural burger joint), pull him into a car and literally lie on him in his old tutor’s car until the lighting bolt subsided.. Boy was I wrong about dreaming of a regular summer vacation (regular meaning doing whatever we could mostly locked up at home with no schedule). So oops, my purposeful and positive denial forgot about his condition. It’s so lovely to live in purposeful denial until, wham, reality just kicks you literally in the face.

    So when my husband who is on leave from Afghanistan –Yup folks I’m doing this solo every four to five months.– comes back and makes this statement I just want to upchuck from the level of sadness and despair that statement poses. So instead I fight in the hopes of there is something out there for him that he loves and gives him purpose or there is someone for him who will love him with all the ups and downs that Autism includes. Or at least I will have the strength to find a way to eliminate the charges of fear and anxiety that bolt through him so someone will not be afraid of the few times he has those moments. Someone who will love him enough to want to spend their lives showing him love. But goodness! It is on days like today and statements such as these that just make me want to cry the whole day and forget about living/surviving moment by moment instead of so easily drowning in the pain of the so unknown future for my son.

    I feel your pain my friend. Yet never give up. We all want our children to be loved and happy individuals. I hope to live to see that. I hope to have peace with knowing I have done everything I can to make that happen! Blessings and strength to you. May the force of purposeful denial and stubborn hope be with you always.

    • You have no idea how much your words touched me. You are an admirable woman; strong as nails but full of love and hopes for your child. I cannot even begin to imagine how it must be for you to deal with this by yourself for months at a time, I just cannot. I do not have any words of wisdom for you. What I have for you are my prayers and best wishes for a better tomorrow for you and your family and to let you know that you are certainly not alone. Thank you ever so much for your kind words. God bless you…

  32. I have said and/or thought every single last word that you have expressed above. You are brave, wonderful, and truly “get” the worries that we deal with every day. I, too, have gone to the support group ONCE, and literally though the same exact thing as you. I can’t deal with the parents who make this about their spiritual journey, or wave the autism flag with pride & make it a cause. My son is my only cause, and I want him to be well, happy, independent, have a full life. Every dime I have in this world will be devoted to making that happen for him. You are a fantastic parent who loves your child the way I love mine. It ISN’T fair! And I am also tired of people telling me about my son’s special kind of genius. Yes, this is true. But what about the uncontrollable rages he has where he leaves me bruised and scratched like a pack of wolves attacked me, and then feels horrible afterwards? What about the times he’s so frustrated he starts tugging at his beautiful, thick hair? Is that also amazing and magical? I am with you when I say that I also hate autism.

  33. I totally and completely get what you’re saying because I feel the exact same way. I’ve known my stepson since he was five. He has severe autism. Isn’t potty trained, barely talks, paces, squeals, shrieks, makes huge messes, can’t understand basic instructions and doesn’t interact. He will be ten in November. I love him and he is a sweet boy and it could always be worse but his autism is the shittiest thing ever. I hate it. I loathe it. It sucks for him and his parents and his siblings and me. So I get it. There is nothing wonderful about HIS autism and I would never wish that on anyone. Some people may see it as a positive thing but for my stepson, it has taken any sort of a chance for any kind of normal life.

      • Dude, seriously. You are brave for writing this because I think so many people are wary of expressing their dislike/hatred towards autism because they don’t want it to look like they feel that way about their child/loved one. It’s a fine line I suppose?? What parent DOESN’T love their kid, no matter what? Ok some are horrible but most parents love their children more than anything. I love my stepson. I love my biological son. And I love the daughter that my husband and I had five months ago. And there’s this little voice in me that is terrified that she will be autistic. No one knows what causes it. But I’m still a little scared. Because I have so many hopes and dreams for her. Hopes and dreams that my husband and his exwife had for A. I can’t even imagine having to mourn that loss. It’s hard enough being a step parent to a child with severe autism. I try to put myself in my husbands shoes. We will see what happens with our precious girl. I can take all precautions- whether necessary or unnecessary and that’s really all I can do. She either will or she won’t. I will adore her either way.

  34. The majority of people who hate autism are people without it. It is not a disease. Plenty autistics have love lives and even children. It’s part of who we are, and it’s not a bad thing. Your son is who he is because he is autistic. Start educating yourself on the topic and talk to a few aspies who are adults. That’ll give you a good idea of your son’s future. By hating autism your just adding on to the number of people who hate your son. Thus, you’re making it harder for him to be accepted into society. Stop tolerating and start embracing.

    • The point he was making was that not all people with Autism are Aspies. Talking to high functioning people with Autism will not give an accurate idea of where another person will be into adulthood, especially with varying degrees of Autism.

      • @Danielle: Thanks!!!!! That is what I was trying to express… Autistic people do not belong to a separate, distinct species and you just cannot compare them In many instances. Have spoken personally with Temple Grandin… Twice and I would love for my bout to be able to be as independent as she is, but at this point, I do not know…
        @Bee: Thanks for your comments, but if you re-read what I actually wrote in the post, it is about what autism does to my boy. If it were not for the fact that his reality can make him unsafe or unable to interact with the world, I would think nothing of it, as my young man is delightful! It just terrifies me what may happen when I am not around anymore…

  35. This post is very timely for me. You see, my son is not quite 17 and is incredibly handsome. He is charming, witty, has a smile that lights up the world and the most infectious belly-laugh you’ve ever heard in your life. He’s extremely clever, has amazing eyesight and has been a pitch-perfect singer since the age of two.

    He is also profoundly autistic with only a few words that he can say without prompting. Because of his strength and temper he has been with foster carers since he was four years old because an epileptic mother cannot possibly hope to deal with erratic and often violent behaviour from a child who can throw her across the room in the blink of an eye. His violent meltdowns caused him to be expelled from his SN school, and then the first college he attended.

    Last week he was sectioned to a young adult unit under the Mental Health Act, and he will remain there for a minimum of six months. He was transported to the unit in restraints, and has apparently remained unpredictable and aggressive ever since.

    My son doesn’t even understand family dynamics – I’m the one he knows as “Mummy”, but he doesn’t know what “Mummy” actually means. He knows that a slightly younger boy he remembers from school is occasionally at “Nana’s house”, but he doesn’t understand that this boy is his cousin.

    He’ll never feel the first stirrings of love, or know what it is to kiss somebody wonderful who isn’t family. He will never be a husband or father; he will never be able to live independantly or dance with a significant other in the rain.

    If he were gay (which he is not), decided to hitch his way around the world during a gap year, wanted to join the circus or become a woman I would embrace his life choices and give him my full support because he is my son and I love him. Anything but the hell he has to live with, because what does anything else really matter compared to how he has to exist in a world that he can never be a part of?

    What I cannot do, is embrace his autism and what it has done to him – and to the families (not just his blood family) who love him. When I look into his big green eyes, I mourn all of the wonderful things in life that were taken from his grasp before he was even born.

    Yes, I hate autism – I am on the spectrum myself and my social skills are sorely lacking as a result. But most of all, I hate what autism has done to my son.

    Thank you so much for letting me know that it is perfectly all right for me to feel this way; I appreciate it.

  36. I also HATE autism! I just found your blog because after a terrible day (and it is now 1:30am and my autistic son is still fighting sleep) I googled, I hate autism! I could sympathize with every word you wrote. I love my son very much, but hate his autism. I want to hear his voice, I want him to be accepted, I don’t want him in 40 hours a week of therapy, and I don’t want him to live his life unhappy (and yes, I truely believe he is not happy). I cry everyday! You are not alone!

  37. No yelling from me! My son is 27 and has Autism I feel all those same feelings! To hate and love is all in the norm of being human!

  38. Have you read the book Journal of Best Practices? I don’t know exactly how autism affects Reynaldo, but the book is a memoir written by a man with Asperger’s. It’s really the story of him learning to be married to a wonderful woman (who gets asked at every cocktail party what a woman like her is doing with a guy like him). Of course, Asperger’s is not Autism, but honest to goodness, the man who wrote the book would be a nightmare to be married to in a lot of ways. And his wife loves him – lack of empathy and 2 hour showers and meltdowns and all. It’s a very good, very funny book. I bet Reynaldo would enjoy it as well.

    You are a special person, One. But you’re not that special. Even with the frustrations, you love Reynaldo just as he is and if you can do it, I’m certain there are other people who can and will love him as well.

    • I don’t know Reynaldo either, but even if he does find a partner that loves him there are many people with autism who will never find someone to love them as a romantic partner does. They simply don’t have the communication skills nor the social skills to connect with another person on that level. I think the desire to connect is absolutely there in most if not all of them, but autism keeps it out of reach. So the fact that many people with autism or Asperger’s have relationships does not help those who are more profoundly affected and therefore have no chance. That is why I hate autism.

      • I realize that, and it is a deeply sad reality that many people with disabilities have… Thanks so much for your comments and I am happy that at least the post calmed you down a little bit…

  39. I am considering the source in this reply. You are certainly entitled to your opinion, once you actually have read the post and not jump to conclusions just because of the title. Again, I said what I wanted to say and I will not repeat it here. I will ignore such vicious and disrespectful comments (from you or anyone else) from now on.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s