Hugging the Haters: Why hating autism is not so bad

Free Hugs

Image by an untrained eye via Flickr

If you express a hatred of autism, chances are very high that someone will come along and tell you how offensive your hatred is, without making any effort to either support or understand the person doing the hating. You may get a lecture about how autism can’t be separated from the person, so to hate the autism is to hate your child. Or about how “hate” is such a strong word (as if that in itself is an argument). So I’ve decided to write a post supporting the haters, because in my experience, hating the haters solves nothing, and in fact can further their hurt and confusion. What they really need is a great big hug.

The first thing to appreciate is that hatred or anger, is usually just a stage in the process of coming to terms with a child’s diagnosis. Learning about autism itself, and the impact on a  child, is not a one-day experience, it is a one-day-at-a-time experience. It’s commonly said (and quite accurately in my experience) that it can take a good year to reach full understanding and acceptance of what it means to have a child diagnosed with this life-long condition. How long it actually takes will differ according to how severe the autism is, and the family’s previous knowledge and experience with autism, there’s no one-size-fits-all here.

Telling the parent (and it’s usually a parent being attacked for hating autism), that their emotions are invalid or offensive, completely ignores the fact that the hatred is probably transitory, and that going through that emotion is a necessary part of eventually reaching full acceptance. If you deny them the chance and right to express their genuine emotions, you are neither helping them nor their child, you are just asking them to suppress their emotions, which is particularly unhealthy and can slow down their progression.

Instead – even if the parent is not new to the autism diagnosis – the sensible and helpful approach is to first ask why they hate it. Perhaps they are confused about what causes autism – many people see autism as something thrust upon them by vaccines, which makes them angry. Fine, take the chance to inform them and change their mind through better information. Maybe they’re hating autism because they’re extremely depressed in general and are struggling with all aspects of life at the time, fine, then offer them some kind words of support and reassurance, and maybe point them in the direction of professional help. Or maybe they’re so angry because they feel utterly helpless in the face of the behavioural challenges of autism, in which case they need to be told about things like PECS or occupational therapy or whatever else can help whatever’s challenging them the most. For each of those various causes of the hatred, the help differs. Just telling them to “not hate”, addresses none of those issues.

When you tell someone not to express an emotion, the emotion still remains, and can in fact intensify because the person is receiving the message that what they think, feel and experience, has to go unsaid. It increases bitterness, and that sense of isolation (physical and emotional isolation is a huge problem for parents of autistic children already). They will – sooner or later – find someone else who hates autism just like they do, who aren’t as well-informed and capable of lessening the anger and helping them address the causes (and who will let them speak honestly about their emotions since they share those emotions). The last thing you want is a community of angry, misinformed parents feeding off each other’s confusions.

It is far better to welcome these haters with open arms; expose them to new attitudes and reasons for those different attitudes, at the same time as respecting how they currently feel about what can be a very difficult condition to manage. Because attitudes don’t spring forth from nothing, or being told that your previous attitude was wrong; they come from information, experiences and can change gradually through being part of a community. Better it be the welcoming community that disagrees, than the welcoming community that reinforces that hatred.

The idea that hating autism is the same as hating the child / person with autism, is assuming far too much, and painting the hater as a villain when if you asked a few questions, you’ll probably find the exact opposite: That they are saying they hate autism, because they deeply love their child, and don’t wish to confuse together their feelings about one with the other: “I don’t hate my child, I hate the challenges that autism is putting him through”. It is a good thing then that they are separating the two, you don’t want someone to be hating their child (it is a sad fact that some people do hate their autistic child, be glad the person who says they hate autism has made a distinction!)

The argument that autism is intrinsic to the child, and therefore to hate autism is necessarily to hate the child, is a hotly contested idea. If you want to have that debate with the parent, then have that debate openly, don’t assume they accept your premise that the two are inseparable then skip to attacking them for feeling something they don’t feel (ie hatred of autistic people).

Yes there are people out there who hate autism, full-stop. Maybe they don’t understand the huge variation in autism, and see it only through the severe cases they’ve personally interacted with. Hell, maybe they just hate differences and would use eugenics to wipe out all differences in human beings (that has got to be the rarest possibility, but is often treated as what the haters must really want, and are attacked accordingly). But how can you know if you never ask, and how can you correct them when you don’t know what they’re actually saying; as I’ve tried to make it clear in this post, there’s a huge variation in what they might mean and why they feel the way they do. It might sound trite, but if you really want to stop people hating autism, you can do it best by showing the haters a bit of love.

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33 Responses to Hugging the Haters: Why hating autism is not so bad

  1. bbsmum says:

    This has got to be one of the most balanced, sane, compassionate view of this conflict that I’ve ever read. Applause.

  2. MJ says:

    Or some of us “haters” just don’t see the good in romanticising what is a heart a neurological disorder.

    • I’m with you in that boat MJ. My post was trying to open the minds of the people who attack others for saying they hate autism, so it speaks to them from their perspective (a perspective that thinks autism isn’t worthy of hate). I want them to stop attacking people who are hurting already, and try to help them instead.

      My personal view is more complicated than hating or not hating autism, but I do recognise a shift in my attitude towards autism as I learn more about it and live with it longer, but I am not so arrogant as to think everyone will go on the same journey as I have. Maybe I’ll write a post about my own attitudes and how they’ve changed, as a spin-off from this one.

    • Thank you jillsmo! And thanks for stopping by, I’m a huge fan of your blog and I think it’s particularly awesome that you provide a safe place for people to talk openly about their attitudes towards autism.

  3. Tendai says:

    I can’t say I hate autism. I do hate the aspect of autism and sensory issues that causes my son to compulsively headbang, bite himself, wrap cords around his neck and blow snot. But I love his memory and his quirkiness. He’s four and hopefully with help he will stop some of the behaviors like blowing his snot which really grosses me out and other smaller behaviors that we couldn’t stop with medication. He stopped the headbanging with medication and also started talking! I really hate that when he hurts or is sick, he can’t tell me what is wrong so I can fix it or know when to take him to the doctor. I hate feeling helpless sometimes and I hate how my family doesn’t get it and even after I educate them, they still say stupid stuff. Read a book, people! I hate fighting for his education and all the rights he is entitled to receive by law and I hate how I am told there is a short window for new neural pathways to be developed if only he would be in ABA therapy but WE CAN’T AFFORD IT! I feel like a sucky parent because I selfishly won’t give him this treatment because we need to buy groceries, pay our mortgage and other selfish things like that which also benefit our son.

    I feel conflicted because I would love for his sensory issues to be taken away but then I don’t know if I would want his autism to be taken away. What would we be left with? We’ve only known this boy with autism and sensory issues.

    • MJ says:

      “I am told there is a short window for new neural pathways to be developed if only he would be in ABA therapy”

      Fortunately, this is not true. I am not sure where this line got started but I have seen many people use it. Research today shows that there is no “short window” – children with autism can and do continue to learn at all ages. Nor is ABA the only therapy that can work – it is just the one with the most evidence behind it.

      What seems to be important is how early you start working on the problem. The earlier in life you start interventions, the better the potential outcomes. It doesn’t matter as much if it is ABA, speech, OT, or some other method.

      So there is no need to feel guilty for not being able to afford ABA. As long as you are attempting to do something you are doing the right thing.

      “What would we be left with? We’ve only known this boy with autism and sensory issues.”

      I am not trying to pick a fight, but I really don’t understand that statement. I view autism is a damper on a person’s personality and abilities. It prevents the person from being fully able to express who they are.

      If you managed to remove your child’s disability you would be left with your child. He would be the exact same person just without the limitations imposed by his autism. So from what you said, he would still be a quirky kid with a good memory.

      Look at it this way, if you suffer from severe allergies all your life that prevent you from enjoying the outdoors, would you complain if that impediment was removed and you were able to enjoy being outside?

      Or perhaps a better example would be if you had bad vision and required glasses to see. If you then had corrective surgery and were able to see without requiring the addition support (the glasses), would that make you a different person?

      So if you could remove the impediment to functional/social communication and the obsessions that are autism and give back the ability to function without supports, why wouldn’t you want that for your child?

      • Helen Love says:

        I agree. I recommend the book “The Brain That Changes Itself” which describes how interventions can help at any age. Also the free e-book “Congratulations Your Child is Strange”, written by an autistic man.

  4. mamafog says:

    Well written post. It does not seem right to criticize another parent for what they are feeling. I think that applies to overly positive sentiments as well as negative.

  5. sharon says:

    This is a great post. Well said.

  6. Thanks mamafog and sharon 🙂

  7. Luna says:

    This brought tears to my eyes, because I am a hater. I am so sick and tired of being told what a blessing autism is and how I should “embrace” it. My favourite is, “You just have to find what he’s good at and work with it”. As if they’re all some sort of closet Rain Man. My middle son isn’t good at anything but wrecking things. He’s broken the garden shed and a computer this week alone.

    I HATE Autism. I hate it with a fiery burning passion. It infuriates me that my kids will miss out on so much of what it is to be a kid. I … had a whole list of reasons I hate it, but it all boils down to one thing: I HATE that Autism has stolen every single dream I had for my kids (and myself) and made me replace them with smaller dreams of things everyone else takes for granted. Autism can rot in hell.

    And I hate that I haven’t gotten one full night of sleep in 5 years.

    • I completely understand what you’re saying. It can be hell, sometimes it feels like an endless hell. I hope it gets better with time, I hope you and your family are getting the support and the resources you need. I also know though that without a good night’s sleep all the support and resources are not going to be enough (I’m currently a zombie, getting up every two hours at night to deal with one kid or the other – my left eye keeps painfully watering and I’m tripping through recent days in an uncomfortable fog – so believe me I get that too). It sounds like you’re in some serious need of respite, but I know too that is easier said than done – people have been telling me to put my son in respite ever since he was diagnosed, but I haven’t found an organisation or person I trust to take him yet, he’s now five.

      I just wish you all the best, from one tired mother of an autistic child, to another.

    • Kay says:

      Well said. Your reactions and feelings are logical and sensible considering what you’ve ended up with.There are very awful forms of autism where you will keep putting in for ongoing personal loss and really no worthwhile gain even for your son who really isn’t able to appreciate you or any one.I’ve a BSW and worked at times with cognitively challanged kids and adults. The severe kinds of non relating negatively expressed Auistics of this negative type were ones I’d prefer not to have to deal with despite having pity for their personal plight. Other’s with other cognitively disabling conditions by contrast were generally a delight to know and service. You’ve my sympathy and actually hope you can get to realising that relinquishing him may be the best idea and act on it. Why sacrifice 3 or 4 lives for one life that no one can really have any significant positive impact on? Were he instead a dedicated drug addict or a negative psychopathic disordered personality harming you and your other sons lives and sanity you’d let him go. You’d be expected and praised for letting him go. The only difference is he has no intent. yet his presence is just as destructive..Never worry about others opinions as you’d be the best judge of how his autism immmmpacts and is likely to.

  8. Michelle says:

    Thanks for this…I’ve dealt with similiar attitudes before, and, having a son with classic autism is hard enough, without people telling me that I hate my SON because I hate the effects autism has had on him and our family.

    I’d love for you to look at my blog – maybe even add it to your list? Stark.Raving.Mad.Mommy took a look and liked it. Thanks. 🙂

  9. shaudame says:

    Well my 14 year old with autism (a child who regressed from having sense of self and language to non of the above) during a recent illness smashed a wall, way down beyond anything I can repair on my own, with head-banging. Since a PhD in behavioral psychology has not been enough to stop him head-banging, after a few black-eyes I just leave when it happens. It must happen 200 times a day. Love autism? Well when it means a non-verbal child in extreme pain beats me up because I can’t stop him beating himself up from the pain, I think not.

    There is no such thing as autism. There are a lot of things that look like it. My non-verbal son has the type that is hell for him and those who live with him. I probably am the “eccentric geek who could get the diagnosis thing and function well” type. Except that those types keep telling me that autism is not a disability, even as I deal with an autistic who is exquisitely aware of others pain and sensitive to their feelings about him even as he head-bangs, hits, surfs the net with deftness, throws computers across the room when the net is slow, eats only three expensive foods only under certain conditions, hits out at others . . . Accept? According to current thought, if my husband beat me up I would be an abused wife. If my autistic son does, it’s my fault for not managing things better.

    Okay the house just shook from a head bang. The wall is gone, I wonder how long the floor will last. He loves his ipad, but can’t stand a charger attached. Hours and hours and hours of explaining red, green charger, extension cord . …. He can find anything he wants on the net but can’t bear to have a charger attached to his ipad. Time for going to try and help and take another hit.

    • Hi shaudame,

      It’s hard to know what to say to you. You have my sympathy, and my understanding to a certain extent too – my son used to be quite destructive towards both people and property. But I know my sympathy and understanding don’t help you. I think it is incredibly important that people realise the full extent of the spectrum, and acknowledge that families like yours exist and need very serious levels of support and assistance; not try to brush your reality under the table with pretty words about how society’s acceptance is all your child needs to flourish (which is clearly unrealistic and distorting to what you’re going through).

      I did note that you said “there is no such thing as autism”. And though I read what came after that, I didn’t see explanation or reason for that statement. Autism is defined by observable behaviours, so when you say “there are a lot of things that look like it”, you are just confirming its actual existence. I would be interested to know more precisely what you mean, but I know that defining autism and talking about fine details of its existence is not at the forefront of your mind or concerns right now, so I’m just as happy to leave that as is.

      Either way, I do genuinely wish you and your child the best. I sincerely hope things get better and that you have good days as well as the horrible days.

      Thank you for your comment, and for sharing your thoughts and experiences.

  10. shaudame says:

    Well my 14 year old with autism (a child who regressed from having sense of self and language to non of the above as a young child) during a recent illness smashed a wall down, way down beyond anything I can repair on my own, with head-banging. Since a PhD in behavioral psychology has not been enough to stop him head-banging, after a few black-eyes I just leave when it happens. It must happen 200 times a day. Love autism? Well when it means a non-verbal child in extreme pain beats me up because I can’t stop him beating himself up from the pain, I think not.

    There is no such thing as autism. There are a lot of things that look like it. My non-verbal son has the type that is hell for him and those who live with him. I probably am the “eccentric geek who could get the diagnosis thing and function well” type. Except that those types keep telling me that autism is not a disability, even as I deal with an autistic who is exquisitely aware of others pain and sensitive to their feelings about him even as he head-bangs, hits, surfs the net with deftness, throws computers across the room when the net is slow, eats only three expensive foods only under certain conditions, hits out at others . . . Accept? According to current thought, if my husband beat me up I would be an abused wife. If my autistic son does, it’s my fault for not managing things better. So personally though I could easily get a definition of HFA, I won’t. I am not disabled, my son is. Everything is geared for high-functioning, he is low. So we have all the challenges and non of the resources.

    And please would autistics who want to celebrate their difference stop telling me that all autism is their autism. I am guessing they can do the bathroom thing alone. My son can’t. Neither can he blog, or post or read poetry he has written. He also can’t brush his teeth, and has seizures, and a blood draw to check seizure drug levels takes a bunch of chloral hydrate and six people, most of whom end up with bruises. He is an intelligent person behind a screen. The screen is autism. He hates it, I hate it. For almost two years he was not that, but a great typical kid. Then he got sick and lost even the ability to identify himself in a mirror – falling apart like a person with Alzheimer’s. And he became autistic. So yes I hate autism.

    Okay the house just shook from a head bang. The wall is gone, I wonder how long the floor will last. He loves his ipad, but can’t stand a charger attached. Hours and hours and hours of explaining red, green, charger, extension cord . …. He can find anything he wants on the net but can’t bear to have a charger attached to his ipad. Time for going to try and help and take another hit. PECs ABA, Floor Time . . .. name it we’ve been there.

    I don’t hate functional autistics who want to celebrate a distinctive and fascinating personality type. That is wonderful for them. To me it feels like they hate my son because he is low functioning and bears their label.

    Shaudame

    • Thank you for adding in those extra thoughts shaudame. I realise you probably tried to re-write your first comment and my blog in the mean-time published your original comment (?), either way I’m happy to leave both up if you’re happy to have both up. Otherwise I’ll delete your first if you prefer and just leave this second one up.

      I just want to say too – re your added comments here – that I understand your frustration with many people within the autism community with particularly “high functioing” autism, who purport to speak for everyone else, in such a way that plays down the importance and seriousness of your situation. I think it is absolutely vital that no one end of the spectrum purports to speak for those with such extremely different lives and experiences. Particularly when the result of doing so can be a diversion of much needed research and assistance for those most seriously affected. It is an important issue, no doubt.

  11. I’m the mother of a 12 year old low funtioning autistic son and I can 150% relate to Shaudame. I too hate autism. I love my son dearly and I wish more than life that he were not autistic and trapped int he mind that he is. It keeps his intelligence and heart caged. It makes him fear and react to things in life that should bring him joy. I’m not uneducated on autism, I’ve been doing research and attending seminars for years. Shaudame is right, everything is geared for higher functioning. Nothing helps MY SON. In my mind there is nothing to love about autism. Joining the child with the disorder is madness to me. My son was normal and developed normally up till 15 months. He had a reaction and within 2 weeks my baby… the one pre-autism… was gone. How am I supposed to embrace that? I do hate it.

    Right now I’m going through daily In home training, the only resource available to me, trying to regain control of my house while I still can. He became violent last year and was removed from his public school district to a day school. That hasn’t helped at all – a year later I still get a stack of incedent reports every week. A month ago he began to phsyically attack his 7 year old brother. His psychiatrist wanted him hospitalized to regulate his medication and get blood work done, but guess what? He’s too low functioning for the hospital to take him because he would require a 1:1 ratio. So we were turned away when we were in physical danger of him harming us. I’ve got major bruises and a black eye right now – no one in the medical community even cares.

    I’ve spent days on the phone trying to find him help and find answers to how we can somehow have some semblance of a normal life all to no avail. If your child is autistic AND has a mental illness you are just out of luck. Plus, we are at the disadvantage of not having any money. so, the residential homes that might be able to help us, won’t.

    I understand where Shaudame is coming from on her statement of “there is no autism” It’s not that there isn’t, it’s that it’s not a label you can place on a person and have anyone understand what it actually means. The umbrella is so large and the issues so broad that you can’t just say my kid has autism. it’s not like cancer or downs. It’s a generic label that encompasses millions. my son needs a diagnosis that will actually let him get some help.

    My family is suffering unbelievably and we are all alone. I’m so tired of being alone. I’m tired of my son having no real joy, being angry all the time, not understanding his body, and not being able to tell anyone what he feels or thinks. Do I hate autism? You bet I do. And I’m pretty darn sure my son hates it too.

    Just FYI his official diagnosis’ are PDD-NOS, Sensory Integration Disfunction, Speech Delay, & Obsessive Compulsive disorder. He is 90% non-verbal.

    • Thank you for sharing your story Brooke. It’s important to hear these things, even though I know it probably hurt you writing that all out, and reflecting on just how bad it is.

      I wish you and your family the best.

  12. MattyAngel says:

    Someone click link to get to my site again so I come to see what they was read before coming.

    I get mad to :(!! Some days I get not happy about being me.

    I get mad when I get stuck on how to open a door or a draw, or how to say words, or when I forget what I am doing and go and do twice in a row, or when I do not understand something like someone’s face…

    And on those days I wish not to have Autism. I know that is what makes me different.

  13. Kim says:

    This is a great, great article. So very thoughtful and right on!

  14. Maya says:

    I say AMEN to your wonderful website. I have Asperger’s and I hate the sensory issues it gave me. However, I do not allow them to get in my way. I do not see myself as an “aspie” or anything. I see myself as a person who is a recent college graduate with her Associate’s Degree who can do anything.

  15. Marie says:

    I fear my 22-month old son has autism. I am from a third world country where there is NO government support for kids with special needs and where people with autism are generally viewed as retards. I know better but that doesn’t help. We are poor. I am educated but I’ve had no luck in finding a good job. There are a handful of therapists in our capital city but I can’t afford their services.

    I’m trying to get my son to sleep now as it’s 2 in the morning. He won’t sleep. He just bit me. He doesn’t talk, doesn’t seem to understand language, he laughs for no apparent reason, knows no “tricks” other than stacking rings, doesn’t imitate, doesn’t point, doesn’t react to his name being called, etc.

    I am hopeless. I’m not looking for sympathy. I just want to say that no one can blame parents who hate autism and those who do blame them are self-righteous or are in denial of their own hatred of autism. I hate autism with every fiber of my being. Because of it, I want to kill myself most days. When I don’t want to kill myself, I wish for armageddon.

    We’re hopeless, my son and I. I envy all of you who have access to even laughable services.

    • Kay says:

      For your sake and even your sons sake, relinquish him to an orphanage or whatever institution is available. Once thought of despair and death occur it can slip into danger. You are quite understandably justified in feeling as you do. . Hence the danger. Relinquish and see it as safegaurding two lives which is a good action, the right thing ti do.

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