Autism Sucks!

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“MIKE WAS APPROVED FOR SOCIAL SECURITY SUPPLEMENTAL INCOME!!!!!”

And it sucks – AUTISM SUCKS!!  I’m filled with sadness as I sit imagining a life on the $710/month that our country is providing to meet the basic needs of disabled citizens.  Even worse, I’m one of the lucky ones – my son was approved on his first attempt.  I have been hit with a reality that has shot through my heart.  I’m NOT posting about his college acceptance letter – I’m posting about his approval for a life of poverty and a reliance on government assistance.

I know that there are those in the autism community who will attack me for stating that “Autism Sucks” and I’m envious of their perspective.  I’m also wondering if they have blinders on to the challenges facing our family members.  Do they know how many adults with autism are wasting away in group-homes?  Do they share my fears?  How do I embrace a disorder that has caused my son so much pain and struggle? How do I embrace a disorder in a society that does not provide a respectful life to its most vulnerable citizens?

Hating autism is not about hating individuals! It is about hating that individuals are in pain. It is about hating that my son was unable to ask for a drink when he was thirsty.  It is about hating that our family members are vulnerable. It is about hating that we must fight for them at EVERY step along the way.  It is about hating that they will outlive us.

I am beyond the ability to even imagine or consider what Mike would be like without autism.  He was diagnosed prior to his second birthday; I had a few years to dream before the gap grew too wide to ignore.  Those dreams are long gone and I love him unconditionally.  I love him, and HE is a wonderful gift, but I do not think that autism is a wonderful gift.  I do not want an autistic grandchild and I do not celebrate when I learn of a child being diagnosed.  I know the challenges that come with the diagnosis and it is not an easy journey.  I also don’t feel like my son was ‘kidnapped’ or that there is a typical person inside of him.  He is simply my son – Michael, my son, whom I love.

If you are one of the lucky ones, who celebrate autism, I respect your journey.  I hope that you will respect mine – especially today, when all I see is an unknown future of challenges. Until we live in a world that PROVIDES a respectable life to people with autism, I am unable to celebrate autism.  I’m far too busy at the fight!

88 thoughts on “Autism Sucks!

  1. vhaga says:

    I agree with you 100%. I am grateful that my son has two older sisters who have vowed to keep him out of group homes. But I can’t imagine David’s life on his disability.

  2. Regina says:

    I am so sorry and I am totally with you. Good for you for speaking such raw emotion that a lot of us parents have thought about. But you know what, Mike has YOU!! You are an absolutely wonderful mother and I admire the energy that you put into your blogs and posts. I don’t always respond but you certainly crack me up at times. It’s hard to think about the reality and yes autism does suck!! I’ve thought about how many parents would be twistedly relieved if they survived their autism child simply because of the dread of leaving them behind. I cringe at the thought of a group home for my daughter but it’s the hard reality. I hate the thought. All we can do is give them the absolute best memories possible and love them to pieces. I am one of those mothers that wallers in emotion but never shows it to anyone because I want to appear strong at all times. I cry and feel so sorry for Alexis because the world will never be me and I know how attached that Alexis is to me. Hang in there Autism Hippie. You know what, it’s ok not to be ok. Big hugs!!! Next year I will be coming along on the autism cruise so we can hopefully meet.

  3. Thank you for all that you do. Even with the huge “burden” autism is you don’t see your son as a personal burden (that I can see). He is a part of your life and you love him without question. I understand how you feel. There are days I really hate autism (and mine is HF/AS) but I will always love that little man (he is almost 6 ft tall and out weighs me 🙂 and I will always see him as one of the most important people in my life. Autism is a fight that we will fight until the day when our children no longer have to struggle to be a part of this world.

  4. Olga Lingo says:

    It’s reality. Everyone who doesn’t agree is in denial. The sooner you realize the truth the sooner you will be able to prepare. God bless you. I know this is incredibly difficult. It’s a terrible disability.

  5. I totally agree wit u $715 isn’t much considering all the things u have to do taking care of your child. For us,I had to forgo working to help him through his tough times at school, felt like i was on call at a hospital. I’m a single young parent & Autism feels like a burden on our lives. I had to move back in with my sister for help with household bills & rely on Medicaid for insurance. Now I fought hard for him to get into a school for special needs children, I’m no longer called so now I can work but since I haven’t worked in yrs, I’m unable to find work due to my lack of experience even though I got a bachelor’s in the time I was at home with my son. So yes, I understand this life sucks and no one truly understands unless you’re going through it. I LOVE my son with all my heart, I just Autism stayed out of our life. But since Autism is here to stay, I just have to buckle down, do what I have to do to make him successful in life. Thanks for your honesty, and know you aren’t alone.

  6. My grandson can’t attend church youth group anymore because of his behavior issues with girls. He is 15. This is unbearably painful for our whole family. We are at a loss. He is so hurt because he doesn’t understand that he is different, or why he is different. And he can’t understand why his behavior is unacceptable.

    • Dee says:

      And telling your grandson that he sucks is going to help him feel less different, how, exactly?

      Given that 1 kid in 50 has autism and there are tons of church youth groups in which autistic kids behave like civilized human beings, this suggests it is possible to teach an autism child how to behave.

      Your grandson’s parents simply cannot be bothered to do so!

      • Jon says:

        Dee, since you’re doling out judgement on a class of already beaten down people, I’d like to hear your story.

      • blogginglily says:

        hahahah…just…you know…teach them to behave! What the fuck were we thinking! THANK you, Dee! Blinders have been removed from my eyes! TEACH them. TO BEHAVE!! All this time I knew I was missing something. And maybe it was the behaviors that caused me to overlook the obvious…if we just TEACH them stuff…they’ll learn it and it’ll all be solved.

        I don’t know why Dee is being vilified here. She is a goddamn great American HERO! SHE HAS SOLVED THE PROBLEM!!!

        TO DEE!!

        Next week…please, Dee…and I’m begging you here…please turn the the brilliance of you penetrating gaze on the crisis in the Middle East. So help me…if you say “There are church groups in which jews and muslims interact civilly, just teach them to not be at war.” I will fly out and kiss you on the mouth. Because that will be probably the best solution EVER! TEACH them to not be at war!

        Seriously…I’m energized. I can not WAIT to go home to teach Lily to behave. If only I hadn’t wasted the last 8 years of her life focusing on how to become fabulously rich by milking the system…or how to generate tons of sympathy and attention by crying about my misery…I might have taught her to behave already!

        Again…THANK you, Dee. Thank you and your church group. And your keen eye toward learning. *long…slow…clap*

        *beams at Dee proudly*

        *tear trickles down face*

  7. Maritza says:

    I feel your pain there are more good days than bad days for me and I embrace that my child has autism. Then there are days that I hate it when I have to think about when I leave this earth. Who would take care of him as I would thank god my oldest son said don’t worry mommy I promise I will take care of him and he is only 12. So I understand where you are coming from.

  8. My nieces being put into a care home is one of my biggest fears. I dread the idea. Just the thought of it breaks my heart and brings me to tears every time. It just reminds me how unsafe this world is. I hope and pray that a miracle will happen and no one would have to go through this.

    This is the sad truth, but it’s the truth. Thank you for posting.

  9. You are so, so right. I get frustrated with those in the community that always want to put a shiny face on everything when things are so, so wrong. Congratz on the SSI, though. We’re on ’round three. Autism does suck, especially for those of us that know the truth. #LifewithAutism.

  10. Elisa Larkin says:

    I understand and respect your journey. I have 2 boys with ASD. My 19 yr old, Zack, barely graduated high school. He started self medicating and attempted community college. He didn’t make it past the 1st semester. He moved 300 miles away in an attempt to gain his independence. It has been awful for me as he doesn’t communicate well with me. He is moving back next month and I fear for him everyday. My youngest, Jared is now 10. He just got out of his 5th inpatient treatment facility and is doing better. His schooling has improved as we finally have a teacher that cares and understands. He is on SSI, and it saddens me everyday. He wants to go into the military. A dream he will never realize. I fear for him every time I think about his future and what that could possibly look like.
    Good luck to you and to Mike.

  11. kell says:

    I feel your pain. Im just starting our fight. My 3 yr old was diagnosed 6 months ago, he is nonverble. He has had 22 surgeries since he was born.and every day i think this sucks for you. They cant fight for themselfs and every time i go to get help for him i have to fight for months. Why is our system set up this way?

  12. It’s scary. And I understand why you hate autism. I hate autism, though it sounds like my children are higher functioning than your Mike. My husband – their father – hates autism. My children hate their autism. It is not a “blessing”, and it does not make them creative or attentive to important details. It limits them. My daughter would be scary smart without autism. She would be just as creative. My son would be just as clever, just as funny, but he could be a leader if he knew how to interact with the other kids. So, yeah, I get how you can hate the limits and the challenges this *thing* puts on our kids.

    • Kaytee says:

      You do realise that your kid and their autism are one and the same, right? Inseparable.

      And that by saying you hate autism, you’re basically saying you hate your kid. Because you cannot separate the autism from the child. What you’re essentially saying is that you do not want or love your *existing* kid, what you really want is a *different* kid. One that isn’t autistic. My heart breaks for your children!

      (Before you lecture me on “love the kid, hate the autism”, let’s have a little hypothetical scenario. Let’s pretend you’re an Evangelical Christian, who believes the Bible is the literal Word of God and that homosexuality is a sin. Let’s pretend your imaginary son tells you he’s gay and you respond by trying to “love the sinner, hate the sin” and “pray the gay away”. Do you think your imaginary kid will feel loved and accepted? Want to spend time with you? Or will he be heartbroken that, well, his mom clearly didn’t want him. What she really wanted was a different son, a heterosexual one).

      • futuredave5 says:

        Kaytee,

        I am not sure that is a good analogy. I don’t think anyone said that autism was a sin.

  13. Rebecca says:

    Autism Sucks! I completely agree with you and feel your pain. My girl is only 6 but the struggles she faces everyday is not something to be happy with or love. I love her for her but it breaks my heart to see her struggle everyday and to see her frustrated and us unable to help her.

  14. You’re totally right, it sucks. But try not to give up hope. My husband suffered a traumatic brain injury (TBI) from a bicycle accident at the age of 20. Within a year or so after his injury, thanks to his father who was an attorney, he was on SSI, Medicaid, food stamps, etc., totaling a whopping $700 or so a month. I challenge everyone who belittles those on public assistance to try to pay their rent, utilities, and food bills on $700 per month! After the bicycle accident, my husband was completely unable to care for himself, and so he lived with his older brother (who is amazing) who took total care of him. After approximately 10 years of debilitating migraines and fatigue, his doctors were able to find the right “cocktail” of medications to help him begin to lead a normal life. Interestingly, medicines to treat Alzheimer’s were developed during that time, and they also worked for my husband. After taking them, he described it as “waking up!” With LOTS of social services help and support from Indiana University (understanding faculty, extended test times, etc.), he was able to finish his undergraduate degree, and obtain his Master’s degree at the age of 36. We met and married during his last year of graduate school. Persistent migraines, short-term memory problems, extreme fatigue, etc. prevented him from meeting the demands of a full-time job. However, new medications for Alzheimer’s, as well as medicines for treatment of migraines and fatigue have been developed within the last few years, and this past summer, we visited a newly established TBI clinic in Indianapolis. They recommended a few changes to his medications, and within a few months after taking this new “cocktail” of medications, my husband felt so much better that he was able to interview for jobs, and accepted a position working full-time– for the first time in his entire life (he’s 45). We have some time before he’s completely out of the SSI system, and we need to evaluate carefully how he’s doing over the coming months, but so far, so good. We were blessed with twins in 2009 (girl and boy), and our beautiful, awesome 4 year old son was diagnosed with classic autism at the age of 2. We think that that autism might be a type of brain injury, and we will never, ever give up hope that medical science will figure out what autism is and how to best treat it.

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  16. You know what…I disagree with your comment that Autism sucks! I think that may send a wrong message to the uneducated part of our society! There are a lot worse things than having Autism. My youngest, 16 has Autism and I am thankful for the tiny bit we get to help him! He is now in a group home and that is the best thing that ever happened for him! It is a somewhat normal life I was unable to provide for him! I had to finally come to the realization that I no longer could keep him at home…I had done all I could for him and that he now needed a team to help him. Yes it broke my heart and still does but I am not angry over him having autism…I am angry that there are not enough programs to help keep them in our home! I won’t live forever and he has to be somewhat independent to make it in this world without his Mom protecting him!

    • That was one of the points I was making. YOUR child is lucky that he was able to find appropriate placement and services. The vast majority are not in ideal situations. SOCIETY must value people with disabilities.

      • Dave says:

        I think you said it exactly correctly. Just as each child is different, each parent has a different emotional reaction to their child’s future.

        Just because we love our children does not mean we can’t rage against the opportunities that have been denied to them.

        We live in a rich country. Yet our society has recently decided to cut benefits for the disabled. They claim it is a way of punishing people who are gaming the system, but the sad fact is that there is also an undertone of hatred.

        It is the hatred that irritates me. No one chooses to live in a group home out of laziness.

        Proper funding of supportive living does not discourage work. In fact, it is much the opposite. With proper supervision and residential care, many more adults could enjoy the pride of a regular paycheck.

        As a society, we could easily afford to fund group homes properly. The only reason we do not is because people are self-centered and greedy.

        Not a day goes by without someone in Wall Street (or Washington) trying to explain why “greed is good”. If they aren’t quoting Ayn Rand, then it will be some other such juvenile fantasy about how wealth works.

        It is too strong an emotion to say I “despise” such people. But I chafe when they try to justify their indifference as a badge of honor.

        Cutting benefits to autistic adults is not a way to encourage them to live on their own. It just sucks.

      • Dave –

        You have inspired me to write about the day I charmed my way into the Tea Party event at the RNC. ☺ I agree with you 100%!!

        The pure hatred that is OPENLY express toward our family members horrifies me. I believe that the anonymity provided on the Internet has fueled a section of our society that is very disturbed.

        I’m provided the web addresses to everyone who reads my blog and I am stunned at some of the viewers. There will be people reading THIS who do not have family members with autism – they’re reading for the enjoyment of my family’s misery. They’re OPENLY expressing their joy to others, who share their psychoses. These are parents and functioning members of society – this is our world and it SUCKS!

    • Dee says:

      Saying autism sucks is saying your kid sucks. He and his autism are one and the same. It’s awful to tell your bit he sucks, that what you really want is a different kid – a non-autistic one!

      • Dee having autism does suck. Would you tell someone who was in a wheelchair that that didn’t suck. Having a disability does not define them but it can limit them. However telling your kid that it sucks that life is hard is not the same as saying they suck. She is not saying she wants a different kid. She wants the world to understand the one she has. Do you have a kiddo on the spectrum? Don’t tell us how to feel unless you walk the walk we walk.

      • Female on the spectrum says:

        Dee,
        They love there children! I have high functioning autism and am 100% hating it I am about to turn 28 can not get a job. Only get $350 from ssi and $325 from the SSDI how can any one live on that? I am thankful I have my parents yet I know once they are gone I have no way of paying for my medications that help my anzienty, or my unknown cause of seizures! Sometimes my ssi money goes down. So tell me your experience Dee with autism? I am a female adult with autism! And I don’t want it yet I still am an adult with autism I am a person! Yet I get treated like nothing from neurotypicals. There are no services try putting a mask on just to go out to pretend everything is ok!

  17. Donna Salongo says:

    You’re right. Autism sucks! Sometimes when I’m alone I sit down and have a good cry. Then I pull myself together and go with livings and taking care of my son. It’s not easy. Thanks for saying it.

  18. Shay says:

    I don’t know who will attack you but I voice my support. You are right. My son was accepted too.

    I fear that people look at me as a government sponge, living off tax dollars. But we made a go of it as long as we could. From the time of the medical diagnosis, we went five years without help. Broken, we decided to do it. They only give us $575 but it barely makes ends meet and he may need this support all his life.

    If you are like me, you didn’t ask for this but you do what you do cause there isn’t any other options. It sucks.

  19. Lin says:

    Fully understand how you feel and everything you said! I think anyone who doesn’t agree with you fully is either deeply denying reality, or isn’t actually dealing with autism full time.

  20. Cath says:

    I too have had a disability payment approved for my 4 yr old son and know all too well the heartache it brings. So many autism parents I talk to about their children have high functioning children who go to mainstream schools and they can still have hopes and dreams and they cannot understand why I would want my son not to have autism, as they all accept it’s part of what makes their children special. My son is special, with or without autism, but if does have autism-severe and as much as I wish he didn’t he always will. And he will struggle to look after himself once I am gone and that is suffering I wish upon no human. Thank you for writing this.

  21. Maryann says:

    I could have written this myself … I also hate autism. I love my daughter beyond belief but HATE autism and am terrified everyday for her future. I applaud you for putting into words what many of us feel.

  22. stephanie says:

    Our son only got $280 am month in SSI. I guess I shouldn’t complain because he got it the very first time we applied. But, its barely nothing. I am hopjng jf he gets older and cannot work, they give him more. I thought it was ridiculous. But hey, you can’t complain about how much you get when you are given at least something right?

  23. I agree with you 100% on everything you said. I celebrate my son but I hate hate hate HATE autism. Patrick was diagnosed at 18 months and we started the process when he was 15 months…I too know your feeling of having no comprehension of what he would have been like without autism. I love him as he is but I had no time at all to have the hopes for my child that everyone else did.

  24. Jenny says:

    Could you clarify how you want society to provide a “respectful life” for your son? What is it that you expect from society? Should everyone be responsible to fund and care for your child?

    Also, I wonder why you say that people “waste away” in group homes? The group homes I have worked at, all provide residents with social interaction, planned outings or activities, mental health workers and medical care. I have also worked at state run institutions where autistic/developmentally disabled adults resided. Despite peoples fears of “institutions”, that was a fine facility that the residents loved. To me, it always seemed that the residents were much worse off when they were at home, where their parents would sit them in front of the TV or a computer, and leave them for hours on end.

    You seem to expect a lot from society, but have issues with group homes. Maybe you need to re examine your thinking on that. Perhaps if you ask for a tour of some available housing in your area, it would alleviate your fears, and your spread of the misinformation that these places are only for “wasting away”….

    • Where are these wonderful group homes? I would LOVE to visit them.

      I expect to live in a civilized society that meets the needs of disabled citizens. Your comments, judgment of parents, and tone really makes me question YOUR values. PLEASE find another profession – I wouldn’t want you caring for my child or anyone else’s family member.

      • Jenny, you said that parent leave their kids in front of tvs or leave them for hours on end…how many autistic kids have you worked with. I only have one and mine is high functioning, but let me tell you, I drag him out to do things, I fight with him about going to Church (it’s important to us as a family) I taught special needs first Communion when he was in 1st and 2nd Grade,,,and then I taught special needs Confirmation for him in 9th and 10th grade. I have been to EVERY iep meeting…even in 5th grade when we had 5. As the parent of an autistic kiddo… I couldn’t leave him in front of the tv because mine would have a melt down and freak out and lose it when the shows changed. I worked graveyard shift until he was in the 1st grade so I could make sure there was always a parent with him. I know that I am just one person speaking, but I can tell you that I am not the only parent of an autistic kid who sacrifices and gives and gives. Until you walk in our shoes you don’t get to comment…and as for the “good group homes” show me one..please because what I have seen has not be positive

    • Brandi says:

      OMG Jenny you have no earthly idea. I’ve spent my whole life working, managing and running grouphomes and have put in many hours working in an institution. They were decent ones. Is okay good enough for our children? How about decent? Not mine. I adopted autistic kids on PURPOSE to ensure that disabled kids in the system don’t fall through the cracks. How share you insinuate that all any if us do is sit them infront of a tv or computer all day. Perhaps you need to your some autistic family homes instead of imply that the system is not horribly broken in very factual and documented ways. So you worked in okay group homes. Do you want to live where you’re told when to eat, when to sleep,when to shower or what you can “choose” to do for recreation and at what time. How about be told what you eat or wear? Have a staff member bath and dress you and hope to hell they don’t rape you like my daughter was while in care simply because she couldn’t talk and tell on them. Everyday for the first six years of her life. How dare you stand in judgement of an amazing mom (documented by the many amazing videos) in the actual fight for her kids rights. So good for you for “working” in okay grouphomes, let’s start our own support group. I did too. The system is still disgustingly broken and I can assure you my kids will not be living in even a good grouphome. Even the ones I ran, as just the nature of a grouphome comes with the problems I outlined above. And I did everything in my power to make the homes I ran amazing. It’s a completely different ball game when it’s your kid and if you don’t know firsthand shut your mouth.

      • Jenny says:

        Hmmm. I ask a few simple questions, and made a few points, only to be attacked. I suppose only a mansion will do for your adult children. How do you propose the taxpayers fund that? I’m asking because it is simply not feasible. What would you like to have, that fits within the constraints of the financing the government can afford?

        I don’t understand what you want from group homes that they don’t already provide. They are not going to ‘cure’ your kids from their developmental disabilities. However, we do work with adults to get them moving, functional, ‘out and about’, able to dress themselves, etc. Rape is obviously not part of the plan and doesn’t happen if more than one staff member is on duty at all times (most reputable group homes are typically staffed with at least two, if not more, workers at all times). If that really happened, that is sad. But you know – life is difficult for all of us. We can’t shelter people from all bad things. Bad things happen. Bad things happen in the parents homes too. Really, really good things happen in group homes too.

        Most (I’d say all, but I’m not clairvoyant) of my residents are better off here and they are more well cared for and attended to, than they were at home. I can see that in the advances they make when they are here. But I guess that the group homes I’ve worked at and been to (approximately 50) are outside the norm, according to Brandi.

      • GEE that DOES sound wonderful! I’m SO happy that MY tax dollars are funding these wonderful group homes. Actually, it sounds TOO GOOD – I mean outings with YOU? Clearly, a very compassionate advocate for people with disabilities. I hope we’re not imposing too much on the taxpayers!

        We are all still waiting to find out the location of these 50 wonderful group homes. Are they in Fantasyland?

  25. Ernie Marcial says:

    I feel you my Autistic Dad brother I am also in your situation and feel exactly how you do.
    My beautiful 16 year old son struggle’s with all the simple things we take for granted.
    I feel your pain and the future that awaits my son. I have two tennage daughters that take care of him untill I get home and its taking a toll on them too. They love him to death and it consoles me a bit that they will be by his side if were are not around but what a horrible thought that they will have to take on that responsibility in the future.
    We need to speak without holding back.
    I commend you for taking the first step to do that. I also voice my opinion but even my family and some friends dont get it. AND IT PISSES ME OFF!!!
    Thanks for posting.
    Ernie and JP(son)

  26. lesserknownfeatsofawesomeness says:

    I totally agree. We are one of the lucky ones as well that my son was approved on the first try. It is a sad reality that we face with our kids.

    • lesserknownfeatsofawesomeness says:

      And anyone that disagrees that Autism Sucks is living with rose colored glasses on and a large bank account.

  27. Coleen says:

    Totally agree with your post. It is very sad the amount of money they expect people to live on and there should be more training for these kids that are able to do some type of work.

  28. Dee says:

    You’re certainly entitled to say you hate autism and that it sucks, but I do hope you reconsider!

    Your son and autism are one and the same. They cannot be separated. So you’re telling your son that he sucks… this is a good idea, why, exactly??

    • Dee, our children are not their diagnosis!!!! Our children are people first, they have thoughts, feelings, just the same as the rest of us, they have wants and desires and needs, just as the rest of us. Autism is second to that person. Autism limits their ability to communicate those thoughts, feelings, needs, wants, desires, their ability to interact within normal societal expectations, it limits them but it does not alter the fact that they are people, with basic human rights. Autism makes them more vulnerable to being preyed on by society! Autism and the child ARE NOT one and the same. In addition to autism, my daughter has multiple other medical problems, and it all sucks, the constant doctor’s appointments, the wondering if we will end up needing brain surgery, will she end up dying because her body doesn’t produce certain hormones, will she end up with seizures. OMG all of that sucks!! Would you sit there and tell me that needing brain surgery wouldn’t suck and needing brain surgery is the same as my child? No. Would you sit there and tell me that being visually impaired (yes she is that in addition to everything else) doesn’t suck? That my child and being visually impaired are one and the same? No, I bet you wouldn’t. Just because autism is not a visible disability, does not mean the child and autism are the same. Autism sucks, the diagnosis sucks, our children who through no fault of their own have to live within the frustrating, confining, and many times debilitating confines of autism do not suck.

      • Karlee says:

        Fine, autism sucks. I’m sure it is very helpful to your daughter that you feel that way.

        If given a choice, would any sane person CHOOSE to have a disability? Probably not. Do lots of medical appointments suck? Yes, but they’re preferable to the alternative — not getting treatment.

        While I have no disabilities, I was raised by dad, who just happens to be blind (he was born blind) — and, well, I had a great childhood. A slightly different childhood than most of my friends (my dad obviously couldn’t carpool, be the parent chaperone on certain school trips, lived in an apartment because it was near the subway so he could get to work, etc), but a great childhood nevertheless. My dad worked as an engineer, had a guide dog, went to all my parent-teacher conferences and took me on all sorts of fun vacations (mostly classical musical festivals in Europe). Heck, my dad is still awesome — my kids have spent every Saturday night at their house from the time they were about 6 mos old, so hubby and I can have date night.

        Would my dad have preferred to be able to see? Sure. But being born blind in no way, shape or form ruined his life. Would my grandparents lamenting the fact that their kid was born disabled have improved my dad’s quality of life? Hardly.

  29. karla fisher says:

    Did you really mean to say that Autism sucks or do you mean to say that society’s funding for the disabled and programs for autistic adults suck?

    • I don’t see a distinction between the two. If you have autism and are unable to receive the necessary services or receive no benefit from treatment, it sucks. I have been chatting with a good friend who has autism during this blog exchange; I think she said it best – “melting down SUCKS!” I HATE that she has to experience meltdowns – it SUCKS!!

      • karla fisher says:

        Ah now I see what you mean. I am Autistic and therefor am very literal. There is a HUGE distinction between the two in literal language and is why there is much issue with this phrase in the community.

        When Autistic people (like your son) read that phrase, they literally translate it onto themselves. Nearly all of them do that. So when you say a phrase like, “Autism sucks” you are slandering me and your son in my language.

        In your language (the NT one) it may be different but we haven’t the ability to make those translations so we ask people to not say that phrase like this but rather to be more literal. It doesn’t erase the pain for me when you say that phrase if you follow it up with explanation. That is like saying, “I love you but….”

        You would do your readers a great service if you attempted to write in a non offensive way to actual autistic people. That way we would feel okay to make comments and to help you out.

        BTW: I spent some time reading your blog and Mike is amazing. You are very lucky to have him. He is actually pretty capable and will not just rot away in this world even when you can no longer care for him. We grow and mature with age even into our old age. I grew more in my 40s and have much more functionality than I had in my 20s. (by a LOT) Mike is already a pretty cool dude. He could have employment, etc at this stage from my experience.

      • i LOVE this exchange!!

        I don’t view YOU as autism – I view you as Karla. How you identify yourself is YOUR perspective. It does not mean that EVERYONE with autism has the same perspective or experiences. I imagine that some individuals with autism may find your assumptions offensive.

        Mike IS amazing and he is fiercely LOVED. He is just as lucky to have me, as I am to have him. My concerns do not stop with my son, I’m equally concerned for ALL people with disabilities. Denying their struggles will not benefit them – their challenges need to be acknowledged and addressed.

        We may have different perspectives, but we are on the same side.

      • karla fisher says:

        Okay so that is a tiny bit rude for you to say to me AH. I wish to be viewed as Autistic because that is what I am. You cannot parse me from my Autism. To tell me that you do not view me as “Autism” is like telling a black person that you do not view them as “black”. You are

        1. Implying that being black or Autistic is a bad thing
        2. Denying that it should be part of my identity
        In other words, you are telling me that it is better or that I would be better if I was more normal like you.

        Please do not do that to me. Being Autistic is very much part of who I am as a person and I am not a person WITH Autism. I am Autistic. MOST autistic adults prefer to be called autistic and they do understand that Autism does define who they are as people. Literally, your neurology makes up who you are. Please respect that it is okay for me to be an autistic adult and that you can still know me as Karla. (Both are important to be friends with me)

        Don’t get me wrong. Being Autistic is not all “rainbows and unicorns”

        Meltdowns do suck. So do the cluster of other co-morbids that I struggle with every day. The anxiety hurts, the sensory sensitivities physically hurt and keep me from doing things I would otherwise love to do (it sucks), the gut issues suck, the lack of ability/energy sucks, etc. But those things are not all Autism. Most of them happen to NT people to some degree too. We do not throw a blanket at those people and say their neurology sucks because they have some struggles. Autism is not about this big bucket of bad things. There are good things too. If you take away my struggles, do I still keep my strengths? Instead of throwing a big blanket statement out there that Autism sucks it is better to make clear distinctions so that we can more honestly focus the topics that we would like to fix or make better.

        About your actual topic of discussion, there are a few things that may help you. I know a goodly number of Autistic Adults living on SSI, foodstamps, etc. Their lives are actually pretty good and they are very happy inside their world. Most of them live in another state from their parents even if they have to have live in aides or daily visiting aides. I have a number of people who work for me to help me live independently. That is okay and my life is very happy. Working at a job until death to have wealth is not the best way for all people to live.

        And to the readers of this blog who say that being in a wheelchair sucks, I would also not make that statement. Again, I know many folks who have mobility issues. They do not feel that being in a wheelchair sucks. That sort of attitude is very ableist and is at the root of the issue to which you wish to fix. It is not better automatically to be able in a normal way in this world. What sucks is that the world is not always open to accept/adapt to those of us who are not normal. What sucks is that our paths are a bit harder due to the ableist attitudes (like it is better to be normal) of those who make policy decisions. What sucks is that normal people cannot even see what is wrong/ableist about making the claim that being in wheelchair sucks. What sucks is that policy decisions and books and even blogs are written about us without to the point that we can barely be heard.

    • Dave says:

      Karla,

      Thanks for adding your point of view. I can see how words are easily misunderstood in this kind of complicated and emotional issue.

      I only meant to complain about the lack of funding for group homes and other types of social support.

      As far as autism itself, I try not to think of it in terms of “good” or “bad”. It simply is what it is. Autism does not make him a “bad person”, it simply limits his opportunities for financial success.

      There are many people who make more money than I do, but that does not make them better people. Sometimes they simply have great talent or physical gifts. A person might be a good singer or a good football player, but it has nothing to do with whether they are a good person.

      In my opinion, we are not judged by our gifts, we are judged by what we do with them. If someone learns to speak fluently in several languages, but uses that talent to advance their own bigotry, then I tend to think of that person as a failure, regardless of their talents.

      On the other hand, if someone is held back by autism, but still manages to support and care for people around them, I tend to think of that person as a success, regardless of the level of their disability.

      But I understand how my son might be confused by the language I use. When my wife mentioned once that she had “bad eyesight”, my son became worried, and told her that she had “good eyesight”. He felt the term was a judgement about how hard she was trying, rather than just a medical evaluation.

      In my son’s playgroup, there are children who are completely non-verbal. We are careful not to ever use words like “bad” to describe their behaviors. It is too easily misunderstood.

      I try to be more specific in my language. Someone might have a “walking disability” or even a “learning disability”, but I do not like to say they are “disabled” because it sounds like they have no abilities. I also dislike the euphemism “differently abled”, because it is just a complicated way of saying the same thing.

  30. Thank you for voicing the paradox – I love my son exactly as he is and embrace everything about him, including his Autism AND I would never have wished his Autism diagnosis on him as his parent dreaming of all the things I would wish for him. It is bewildering and difficult to feel both, seemingly contrary feelings. You voice it well.

  31. Completely agree with you. It took me several yrs to get both my boys approved for their social security. It’s awful. I’ve had to fight nearly everything from their first pediatricians denial to the school and education system for my oldest to receive services. I just don’t understand why we were ignored and pushed aside for yrs, then you hear others who’ve not had to fight, not had to wait and have so much support where we’ve had near none.
    You’re right hippie, Autism freakin’ sux! I too had those same dreams and visions of the same but there was a time my visions did change their course. Same as you, I love my boys more than life it’s self and would fight the world for them but I still hate Autism!

  32. Well, in Portugal my autistic twin daughters get about 40 dollars a month for a disability benefit which doesn’t cover for any second at all any therapy they need out of school. I spend that money on medicine (melatonine, which is not comparticipated by our Estate) for them and, if lucky, a couple of chocolate milk bottles. And that’s it. Impossible to raise a kid with autism with that “help”.
    When adults, if a proven disability that impossibilitates work at all and for good, you can get a benefit of near 150 dollars a months, if you get lucky. If.
    Any disability sucks. Autism sucks. Our Estate sucks. It sucks to need therapy or support and pay for it.
    Good luck and keep strong.

  33. Rachel Lavallee says:

    My son Sam is 7, has Autism. And I hate Autism so much, I can’t even.
    What the hell is there to celebrate?
    What is the upside to this disorder that I’m not getting?
    It makes me want to throat punch people who spew their artificial “Autism is Special” crap. Let’s get real here, shall we?
    There is nothing special about changing a 7 year-olds diaper, so listening to smart assed comments about how “Ooopsie, I think Sam may have (then in a weird hushed whisper,)*had an accident*” With a knowing nod.
    Really? Holy crap, Thanks. I didn’t smell that. I never would have known had you not brought the obvious to my attention. Solid.
    There is also nothing awesome about when my child drops away from my grip, and runs as fast as he can for the road, and even though I’m chasing after him bawling, screaming, “Sam No!” , yet someone seeing this just stands there and laugh as he runs past. Funny thing is, if Sam was a dog, you probably would have tried to grab him.
    Also not awesome…being invited to someone’s house. You initially decline because you think Sam may be too disruptive, so you describe the behaviour you suspect might occur. The someone assures you that’s ok. So you recant, and attend. Then, while you’re there, Sam starts flushing the toilet every 45 seconds. ..AS YOU PREDICTED… and that someone becomes anxious about this, and continues to let you know in a “helpful” manner, “Oopsies, I think Sam is flushing that toilet again, haha.”
    Thanks. I apologize again for trying to mingle. I will go back to guarding the bathroom door, but don’t worry, I will still try to “Relax, mingle…you seem uptight”. I can’t imagine why.
    There’s so much suck.
    The fact that he’ll probably live with us forever. Because there are not enough living options for him.
    Or the fact that we receive $163. 00 a month as his Disability Benefit. Which barely covers the aforementioned diapers.
    No. There are NO upsides to Autism, and I’m sick of pretending there are.
    Xo

  34. Ana says:

    So saying autism sucks is like saying the loved/affected one in your life sucks, huh?

    So, if I said “dandruff sucks” that means EVERYONE in the universe who is afflicted with dandruff (including me in winter) ..sucks?

    Wow…thanks for educating me!

    Sarcasm, btw…in case I needed to educate you.

    Whatever…

    AH! Glad your schmoopie got SSI approval! Hope he’s doing well!

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