Wednesday, June 23, 2010

Response to Kathryn's comment

I was going to post this as a comment in response to the “Why Autism Sucks: Chocolate Chips, Cheap Wine and a Big Ball of Poop”article, but one of the comments has gotten me so riled, I have to post as a regular article.

Richelle's a lot nicer than I am – I was bloody furious when I read Kathryn's comment. Kathryn says she has autism, but she is obviously verbal – and verbal enough to express herself in a coherent manner. One of my sons is neither. Kathryn, if you do have autism, you should realize that it takes many forms, and the form you seem to have is not one that would push me over the edge as a parent. One of my sons is high functioning, but is nowhere near as well spoken as you. He has had times when he wouldn't even venture out of the house due to anxiety. This I can handle. My other son, on the severe, non verbal end, is currently freaking out because the timer went off in the kitchen and I did not jump right up to turn it off; instead I finished typing the last sentence.

My mistake, because it is now 15 minutes later that I am getting back to this. Kathryn, did you have a mother & father & a stable home? My crappy ex husband took off 2 months after my boys were diagnosed (and has had no contact at all for the last 9 years) – I am doing it all on my own. I have no breaks, no weekends & holidays off, I have had to give up my job & career & have learned to live off of IHSS because no one else is willing to do what I do for minimum wage to take care of my boys. How DARE you tell me to stop whining & take responsibility! I went up against our school district & filed due process 6 times between the 2 kids and won each time before I realized I could do a better job homeschooling one of my boys and the money would be better spent on decent therapy than lawyers.

My non verbal son is currently going through adolescence and masturbating every chance he gets. The school district, the regional Center, the Behavioral Therapists – no one knows how to help him. He peed on his carpet so much that I had to rip up the entire carpet & redo the floors. He is also an eloper – I have padlocks on my windows and doors so he doesn't run off & get hit by a car, because he has no recognition of personal safety, despite years of therapy. Am I saying I wish he wasn't like this? You're damn well right I'm saying that! It is not all lovey white light and we just have to accept our children the way they are – it's the world that won't accept them, or take care of them after I am gone. My son will never function in the world we live in, and I am constantly trying to find the best place for him to fit.

I love my son, but yes, his autism is similar to a death sentence – without me, there would be no one willing to take care of him, and maybe it wouldn't be actual death, but he would be placed in an institution & drugged into compliance, so don't you EVER dare to tell me to stop whining & accept responsibility. This is my place to vent, and to find support & sympathy, well deserved and definitely needed, and if you really want to know what severe autism is like, you come on over & babysit for a couple hours. You could use the eye opener, and I could use the break.


  1. Would love to give you a huge hug right now.

  2. You have to remember that Kathryn is on the spectrum thus doesn't get the social rules here. Isn't it a sign of ASD to take things literally, miss the nuances or suggested meanings and to take it all very personally?

    I don't think she realised just how much it would hurt for others to be told such things. Not saying it is okay, merely saying maybe we should understand why?

  3. I love my little bird madly. Madly!! But, of course I wish these struggles weren't such struggles. Autism does suck. And that's okay.

    Girls, we are all in this together. Thanks to you all for being there/here. I need you.

  4. There are some dads, as myself, which are here, and totally committed to caring for our son. It sometimes gets tough enough for the two of us that I can not even imagine your situation. Bless you and keep you strong! It sounds like youv'e had to go through the loops alone. I wish there were more I could say, or do for you, but I hope this response and support helps in someway!

  5. I have resisted posting comments to this blog, because my son is so very highly functioning, and we do not face the day-to-day struggles and successes that are so heartfelt and often elegantly expressed here. But autism at its worst sucks. Plain and simple. The inherent loneliness and isolation caused by being a parent of an autistic child sucks. The struggles at home, the seemingly endless parade of MTs, the countless meetings with the teachers to make sure accommodations are in place and to draft new IEPs can suck. We do it because we love our children. We do it because we relish in their successes. We do it because we have to, because we are their only true advocates. Yet there still is a need to vent about the struggles and successes we experience on a daily basis, the struggles and successes that others have no clue about. This is why this particular blog resonates with me; it is a place for parents to vent and know that they are not alone. So I look forward to each new blog entry knowing that it will move me, perhaps break my heart, but I will feel secure in knowing that my wife and I are not alone in raising an a child on the spectrum.

  6. I'm doing this alone too. On one hand, it is nice to know that I am not the only one suffering. On the other hand, I wouldn't wish this kind of life on anyone, and I'm sorry that there are others in the same horrible boat that I am in.

  7. Just posted another rebuttal on my own blog. This post is so amazing, I didn't want it to disappear just yet.

  8. PLEASE go to Wrong Planet. There are people who post there who are as severely autistic as your son. It is not a death sentence. Also, my cousin Michael B has severe autism so I do know what it's like.

    For the rest of you, please don't start talking about me like I don't know what's going on because I'm autistic. I realized it was hurtful, but because we don't have emotions people seem to think it's okay to post rude things about autistic people and how horrible it is having to take care of them.

  9. See, I think it is interesting that you wrote you don't have emotions. My son HAS emotions, including some such as empathy which he is supposedly not meant to.

    Kathryn, we are only human, and we have breaking points as all humans do. You need to understand YOUR life experiences are not mine, nor my son's, and you are judging us without knowing us or our lives.

    Pot, meet kettle...

  10. I'm too distressed to make a coherently flowing comment, so here's what I've got:

    1) I believe very strongly that most of us -- certainly those following this blog! -- are working very hard to help our children with ASDs reach their potentials, whatever their potentials are.

    2) We do the best we can in the situation we're in. Could we do better in a different situation? Absolutely. Are we in one? Nope.

    3) Who said that people with ASDs have no emotions? Geez! People with ASDs have a FULL RANGE of emotions; they just don't always know what to do with them!

    4) Support for #3: Here's a post from a 20-year-old on Wrong Planet, from just a few minutes ago. (I follow @wrongplanet on Twitter.)

    "I can't take this anymore! I just can't. I'm tired of saying and doing stupid things all the time. I'm tired of embarrassing myself, especially in front of certain people. Forever I've tried to consider those awkward moments as 'learning experiences', but they continue to happen. I know everyone thinks I'm stupid. I have no friends, no love life, no life AT ALL, because I don't know how to make friends, deal with a love life, or go about doing something with myself.

    "I really can't go on living this way. I need to exchange my brain. NOW."

    a) Seems pretty emotional to me. b) Life with an ASD isn't always welcomed by those who live it, even those who live it on Wrong Planet.

    5) I'm so grateful that this blog exists. The ways that ASDs affect our children (or spouses or ourselves, for that matter!) can be extremely lovely or excruciatingly painful, or anywhere in between -- yet another "spectrum." This blog allows for it all and provides a release valve for all that parents/caregivers bottle up on a daily or even hourly basis. (I was going to write "minute-ly," but I don't think that's a word!)

    6) There's more, but my children, both with special needs though only one with an ASD, need my attention.

  11. Wow, I dont even know what to say, as a mother to two children WITH Autism, one mild to moderate and one severe, I cannot tell you how much I can relate to your post, my daughter who is 7 also The Severly affected one is She Uberly difficult to care for, I love her and take care of her the best I can but I can't say Ive never dreamed of how different our lives would be if she were easier to care for. I think Autism affects every person differently and every parent handles it differently, there are good days, survivable days, bad days and HORRIFIC days, people should be understanding of that. I also choose to not say my kids are autistic, I call them by name and they HAVE autism, its not WHO they are, its just affects how they act & react. People may disagree and that's ok, we live in a Free country with free speech and I don't see anyone lining up to care for them either so If people are offended by our occasional pity parties then I say Fooey on them!

    My kids are beautiful, funny, sometimes lovable,interesting, exhausting, and wouldn't want to live without them but I agree Autism SUCKS! I curse it nearly every day!!

  12. I'm tired of being positive about my situation. 2 car accidents in 2 days. Too much to handle on a never-ending basis. Loved the well-written post. Thank you.

  13. Just a brief comment to Kathryn - I have visited Wrong Planet, and just wanted to say that you are wrong - if someone is as severely autistic as my one son, they would not even be able to post on Wrong Planet.

  14. Autism Sucks...yes it does. It sucks not just for me, but for my daughter too...when she gets hurt, she cant even tell us what hurt her. When I am frustrated and dont give in to what she wants, she can only cry and like NT kids, she cant tell me what it is and get it.
    I think she likes other kids, but when she holds them, it scares them and their parents.
    It sucks because when other kids are sleeping, she has to wake up at 8 am every single working day and work for someone for 3-6 hrs a day.
    It sucks because she cant talk, she cant eat properly, she has to work soo soo hard. My heart breaks for her. I cry not just for my own suffering but for her and her challenges and frustrations too. She had the right to just have a normal life and whine and complain and get what she wants, but no she does not get it. Its a hard life for her.Yes it is tough for me too...I hate this life. I will never say that its okay to have to have this life.

  15. Hi.
    I came across this page accidently and stayed to read.
    Kathryn, I'm a 26yo mother of 2 who ticks the boxes for Autism, albeit extremely high-functioning. My boys don't show any signs of autism at this point (they're 3 and 4 months) so I can't identify with the ASD parenting side of things but I can absolutely, totally understand and appreciate the heartache these parents have to deal with everyday. Firstly because I adore my children and I want the stars for them! I want them to grow and experience and love and have friends and drive cars and have babies. As a parent you dream big for your children until they can dream big then you cheer for them every single step of the way. For a parent of a low to non-functioning child I can only imagine but I would guess everyday has a period of grief. Grieving not just for yourself but for your child! All those opportunities you dreamed about when you were pregnant, the hopes and the wants that have had to be drastically adjusted. Until you are resposible for the fragile life and future of your baby then its not something you'll understand.
    Secondly I've actually talked to my parents about how difficult it was parenting me. I wasn't 'diagnosed' til I was 18 so as a child growing up I was just weird. I also have major food allergies which my parents picked up on early on. For me the fact that they switched me to a 100% unprocessed natural diet seemed to offset alot of the autistic traits. I'm aware that diet only helps a small percentage of people with autism and I consider myself so incredibly blessed to be one of them. My parents think I'm wonderful and they wouldn't swap me for the world but it was sometimes really hard. I have an incredibly high IQ, a desire for social skills but a lack of them :o), and a few other issues including wetting the bed til I was 13 (that sucked!). My parents didn't have an explanation for those 'different' things and there wasn't the resources or support out there that there is today. I grew up in rural NZ and until the arrival of the world wide web we were really isolated, both as a family and a country. My parents really struggled at times!!
    I now have a wonderful husband who doesn't always understand me but loves me unconditionally and my 2 fabulous little boys. I need extra support in parenting because I can find it really hard to get my head round some things but all in all I have it so good. People like me, and from the sounds of it, you too Kathryn, should be thankful that we aren't in the position that other people on the autistic spectrum are in. We have a voice - maybe we should use it to HELP parents who are doing their level best for kids not as lucky as us, rather than tearing them down.
    I hope this makes sense and doesn't step on anyones toes and if I've worded something wrong I sincerely apologise (sometimes it looks right when I read it and comes across to the rest of the world totally differently!).
    I take my hat off to you incredibly courageous, committed and loving parents xox

  16. I'm the parent of a high functioning autistic 9 year old and married to a man with it. But we are divorcing and my heart is broken. ANYWAY, my husband can express himself and he has no emotion. He says that he doesn't actually "feel" the emotion. He knows what he is supposed to do as a father....but if his son was dead he wouldn't feel it. He might cry because that's what's expected but he wouldn't feel it.

    I stumbled into this blog also and am THRILLED to have the chance to read. I can compare, commiserate, I'm sorry about how you were hurt. You are SO strong! HUGS

  17. The term "ASD" should, indeed, must! be tossed out. Really. Kathryn writes (point one: capability of expression; 1.a capability of writing) about adults w/ASD being able to meet up without "caregivers" (point two: reality of "my" population w/autism on their own: there is very little, if any, spontaneous interest in peer interaction, with the exception of unacceptable behaviours -ie aggression, inappropriate, unilateral sexual advances, 2.b physical injury to self and others, property damage.

    Kathryn decries the cancer analogy, saying people die from cancer. Well, not everyone dies from cancer, and some people do indeed die from autism (hit by cars, drowning, eg). Furthermore, saying cancer sucks is not construed as putting down the person with cancer, is it? Flash words like "able-ism" may feel really hip, but consider the possiblity of -what should we call it? autie-ism? -ultimately, without careful consideration, words too easily become ready vehicles for hurt. Which is why we really need to toss the ASD term. It just makes everybody nuts, and nasty. I wonder if the DSM has a code for this effect?

  18. Kathryn, you suck and I just DARE you to come over to my blog and make comments in as poor taste as you have done here.

    Bobbie, you ROCK! My son is high functioning but some of the things you have said are SO true, no matter the level of functioning of the child with autism.

  19. OMG!!!! so true!!!!! i was having a pity day today and somehow stumbled upon this site. I LAUGHED, thank you!! My daughter is 9yrs old, non verbal. We are having huge eating problems which are leading to even MORE behavioral problems. I am a single mom too!! Thanks again for the laugh!!

  20. It's my first time reading this blog. Normally I try to stay on the "positive side of ASDs" and the since the title of this blog makes it seem negative, I'd obviously been ignoring it.

    Regardless of how positive we feel there are always going to be things we'd change about ourselves or our children.

    When a child is non-verbal and badly affected by their place on the spectrum those things we'd like to change take on a whole new meaning. If only these children could be "safe" and not have to be watched/guarded 24x7 (to make sure that they don't endanger themselves etc), that would be something.

    I just want to say that Bobbie, you're amazing. Reading that post made me realise that it wasn't a negative post at all. You'd love things to change but at the same time, you're giving everything to your children. You're right. Without you, they probably would be in a very dark place.

    I don't think that wishing for a little help really counts as "whining" and I do think that your actions make it clear that you're a very "responsible" person.

    I haven't read Kathryn's post yet but I don't see how any negative comments could be thrown your way. You know that there's a way you could have your life back but you're bravely putting the needs of your sons before those of your own.

    As far as I'm concerned, that's the definition of a hero. You're a hero there's no other word for it! Just remember that sometimes even heroes need to take time out for themselves.

  21. My son doesn't suck but Autism does. I was searching around looking for support and came upon this site. We have come so very far, our school team, family as well as myself have worked so hard. I'm tired and sometimes hopeless. I literally got beaten up tonight by my 12 year old. After Christmas and I took down his Christmas stuff he threw me over the bed. Didn't realize that is why my neck and shoulder hurt until I was in physical therapy for it. My arm was hurting before his meltdown but now even more. He shoves, hits, kicks, spits at me, moons me after I had an anxiety attack. Most of the time I am all alone in this, the medications he's on now seem to work great during the day. At night and adding on to it he's tired, it's the perfect storm. I pick my battles but I can't let him walk all over me either. He has to comply somewhat and once I draw the line, I can't back up. I do what all these specialists and teachers tell me I am consistantly consistant. wouldn't it be easier to let him eat cookies for dinner, rewind over and over whatever thomas the train video he wants and let him do what he wants. I may get beat up less but if I stick and don't move he knows for next time. Once that battle is fought he gets the idea, hes very smart.
    Thanks for letting me vent. I enjoyed the previous posts and all of us have it hard in our own way. thanks

  22. I was only so nice because I felt if I had put my true feelings in comment form, they may have to be deleted (due to obscenities.) My blood boiled when I read each of Kathryn's comments! They were beautifully written, which makes me all the more angry...because my daughter has to be forced to hold a writing utensil! Autism is such a strange disorder. It covers way too broad of a range of characteristics. Honestly, if my daughter's autism was as mild as Kathryn's, I wouldn't even be searching the internet for people with whom I can possibly relate! I would be taking my daughter out to eat in public places, taking her to the movies and enjoying time with family and friends. Instead I am limited as to where she is able to go and the crowd in which she is comfortable. Kathryn hasn't a clue of what I deal with every single day, and will the rest of my life! Maybe she would like to babysit for me too and "wear my shoes" for a while...

  23. Hi guys - just found the site, and thought I'd add my two cents if that's okay...

    Kathryn, you are right – Autism is not like cancer. People with Cancer and their carers are viewed with sympathy, empathy, compassion and understanding. Parents of Autistic children must accept the ignorance and judgment of the masses – most of which don’t have a clue regarding the condition. Those who do have an inkling (such as yourself), can also be unintentionally cruel and misguided. It’s all in reading the subtext of what people are writing. It is about having empathy for others. Or moccasins.

    I do NOT hate my children, I hate Autism. I personally hate what it has done to my relationship with my children, my family (extended and close), my career, my self confidence as a mother and as a person.

    Autism is a huge part of my son’s lives – it makes them fearful, nervous, agitated, exhausted, teary, aggressive, confused, frustrated, and stressed beyond belief – mostly all in the same day. Sorry, I can’t say “Yay” for that. (There are some parents of blind/deaf children who do, but they are generally the hate spewing trolls on YouTube abusing the parents of toddlers receiving cochlear implants or retina surgery - however, they fail to understand they are eroding what support they may have gathered for their cause by their offensive behaviour.)

    I am one of the “lucky” ones. My eldest son is High Functioning enough to ask me why life is so hard for him…why can’t he ‘fit’ in with everyone else. He wants to laugh at the same things as his friends, he wants to understand the school ‘gossip’, he wants to get excited about the school dance in the same way as his friends do…but it’s exhausting and incomprehensible for him – where it’s effortless for them. That’s what I hate…

    If I could take this away for him by offering my spleen (or any other organ of choice, just name it) I would do it in a heartbeat. If you ever become a Mother, then maybe you would understand this reasoning. Or maybe not – who knows? The fact remains, it is not up to an outsider, Autistic or not – to pass judgment on another parent doing the best they can.(Remember the moccasins?)

    You are right though, in saying that we can learn from Autism. I have learnt that I am so much stronger than I would ever have imagined myself to be. I have learnt that true friends are fairly thin on the ground once the poop starts flying (literally), I have learnt that it is more socially acceptable to become an alcoholic than admit that you can’t take another minute of screaming/aggressive/smashing/crying tantrums. I have learnt that experts are only as good as your next cheque clearing. I have learnt that just when you think you have no more tears, more will be available – and sooner than you think. I have learnt that having an undiagnosed Autistic Husband is of no more benefit for insight than asking an inebriated garden slug for advice. I have learnt that family can be far crueler than an uninformed outsider. None of these things were welcome lessons in my life. One was though:

    I have learnt that on this website, there are other women (and men) just like me…


add your voice to the conversation!
(spam will be cheerfully and swiftly deleted)