It’s Not Autism’s Fault Other People Suck

by Jo on April 8, 2014

“While I do love my son, I wish we hadn’t had him…. Autism is not a life, it is an existence that hurts everyone involved. I had a retirement to look forward to, now I have a child to take care of until I die and then the government will have him. How is that good for ANYONE.”

The above comment was left on my blog recently and has made my heart hurt so much.

Autism IS a life. We live it everyday. There are many challenges  but LIFE is challenging in general. In fact, my life was pretty bleeping challenging way before my firstborn arrived and was diagnosed with autism. Alcoholism; OCD; Panic Attack Disorder; Agoraphobia; you could say I was pretty damn consumed with these challenges.

It was my children who brought clarity and purpose into my life, no matter what that purpose has looked like.

That above statement: “Autism is not a life, it is an existence that hurts everyone involved.” That’s bullshit. To say that we are merely existing is so far from the truth. We live and laugh and cry and learn and celebrate and crumble and pick ourselves back up again and just when we need it the most, an amazing and unique milestone is met or a new discovery is made (this week it’s my eyelashes, which would be fine if they weren’t attached to my eyes) and we feel more ALIVE than most people I know.

I don’t know this parent from Bob, but I feel incredibly sad for his son. How can you fully love someone if a part of you always wishes they didn’t exist?

I’m also getting pretty sick and tired of people blaming autism for everything. It makes a neat little scapegoat though, so everyone from doctors to teachers to parents to family and friends whip out those fingers and point. Aren’t you guys getting cramps from all that pointing?
It’s not autism’s fault kids get denied the supports they need.

It’s not autism’s fault children like my son are restrained, mistreated, and abused.

It’s not autism’s fault people use the r-word.

It’s not autism’s fault children are forced to spend an entire school day in soiled pull ups until they develop sores.

It’s not autism’s fault students are kept in seclusion rooms, locked for hours at a time, alone and helpless.

It’s not autism’s fault neighbors stare at your child like he’s growing a tail.

It’s not autism’s fault there aren’t nearly enough employment opportunities or transition programs for adults on the spectrum.

It’s not autism’s fault that in the year 2014, segregation is alive and well on public school campuses across the country, with so many of our special needs children kept in back buildings, far away from the general education population because, got forbid, the “normal” kids catch it (By the way, it’s also not autism’s fault that some people believe it’s contagious).

It’s not autism’s fault perfect strangers look at my son and believe he’s not worth the trouble.

Autism may be to blame for many things: Sleepless nights, financial woes, unique challenges which require unique and respectful interventions. I’m not saying it’s a walk in the park and that I bought a cake the day Andrew was diagnosed. But when it comes to so many of the hurdles our families face each day, let’s place the blame squarely where it belongs: On ignorance, prejudice, and a nation that has so much more work to do in order to provide support, services and continued legislation aimed at protecting our loved ones on the spectrum.

And the next time my son is ignored, disrespected, or failed by the system, I’m not going to blame autism.

My finger will be pointed directly at the source

which is most certainly not my autistic child.

Because it’s not autism’s fault, that other people suck.

{ 30 comments… read them below or add one }

Brandy April 8, 2014 at 1:45 am

Yes, yes & yes! Thank you for saying these things that need to be said. How sad for the child whose parents cant look at them and see the wonderful unique person that they are and not the one element that is autism. Its a challenge, at time frustrating and heartbreaking, other times inspiring and beautiful. Bottom line is autism isn’t a terminal disease, its simply one part of a wholly unique child. No one can predict what challenges life will throw you, an autism diagnosis isn’t the end, it just a different beginning.

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Helen April 13, 2014 at 9:42 pm

my grandson autism and I love him with all my heart. I think the saddest thing he ever said to me was “I wish there was a pill to make me normal”. I think Brandy said it all.

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Carlee April 8, 2014 at 2:14 am

Interesting words from a woman who told autism to “suck it” not so very long ago and only begrudgingly conceded that her son’s autism might not be the ball and chain she spent a whole lot of time writing that it was.

Or that her son’s much more severe form of autism wasn’t anything like the autism of autistic self-advocates — ones who had the ability to eloquently explain in writing why they were offended by “suck it”. Who really wasn’t into accepting her kid’s autism but rather spent all her waking hours trying to “get rid of it [autism]” because it “steals their voices and stifles their creativity and assaults their tender and sensitive sensory systems and holds their bodies and minds and emotions hostage, SUCKS”.

Despite the fact that your kid and his autism are one and the same. And wanting to “rid” your kid of autism is more or less the equivalent of saying that you don’t want your kid, you really, really want a different child — a non-autistic one.

I’m not quite sure how to reconcile that with your sympathy for spectacularly irresponsible parents of autistic kids — the ones who fail to properly supervise them (“neglect” is the word that springs to mind) and who tragically end up dead as a direct result of parental negligence (“criminally negligent homicide” would be the appropriate term here in NY).

I guess acceptance of a kid’s diagnosis is an ongoing process (which I get), though the sympathy-for-parents-who-cannot-be-bothered-to-exercise-minimal-due-diligence to ensure their offspring do not, say, die as a result is just plain baffling.

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Jo April 8, 2014 at 2:22 am

Well Carlee, I suppose that I could offer you an explanation, except, I don’t owe you one.

I am no different than other parents, raising other children, autistic or otherwise. It’s a journey. It ebbs and flows. It presses forward and retreats. It’s confusing and wonderful and as long as our hearts and minds remain open, the learning and growing and changing never ends. That’s part of the gift of parenting. What I felt then and what I feel now are a result of continued progress and enlightenment.

But there was never a day, no matter what I wrote or said or experienced, that I wished my son was never born.

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Emily April 13, 2014 at 1:14 am

Jo,

This reply is in response to your reply to Carlee.

You have said that you’re “no different than other parents”, which is true to an extent, but completely untrue in another.

I truly think it’s wonderful you’ve never experienced those pitch black, desperate moments from Hell where you’ve, even for just a second, wished you could go back in time and not become pregnant. I truly think it would be incredible to never wish after 6 nights with no sleep, bruises and cuts from being abused by you ASD child that you’ve never wondered how much more “bright” life would be if you’d never bought a child who suffers more than he smiles into the world – whether that thought lasts a second or a month. The truth is, Jo, that when parents have these thoughts – they’re suffering as much as their child – and their childs suffering and misery is usually at the forefront of their exhausted minds when they open up and leave such comments…like the one you’re condemning and judging the parent for making.

I don’t know the parent who left the comment – but I’d like to say something on their behalf as someone who is the honest, amazing parent of a child with severe regressive Autism. Let me tell you something about that parent. That parent loves their child as much as you love yours, Jo. That parent is an amazing, loving, honest parent like me – and like you, Jo. You are no better than that parent – it’s just that you are *different* from that parent, and that’s completely OK.

The moral of this reply – we preach about acceptance and awareness for children with an ASD diagnosis. That acceptance and awareness must extend to the entire family as well. It’s very, very important that parents in this ASD maze can safely say what they’re feeling without popular blogs condemning them for it – that’s not practicing acceptance and awareness, Jo – it’s kicking someone while they’re down. ASD diagnosis’s sometimes (tragically) result in adoption, abandonment, suicide and even murder. Let’s not shun struggling parents and condemn them for their honest thoughts – instead let’s support them AND their child.

Be careful – with the lack of support, resources and understanding out there, this kind of thing may be all it takes to push that parent (or someone like her/him) over the egde. Thanks for reading.

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Nancy July 11, 2014 at 4:04 am

Carlee,
I hope you are such a shining example of absolute perfection that you never become distracted, or need to use the toilet, or require anything resembling regular sleep or show any other signs of human behavior that in your most painful hour of darkness some one tells you that you are negligent.
Thank you Emily for your comment. It was very well put.

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Rachel Cohen-Rottenberg April 8, 2014 at 4:41 am

Carlee,

As I recall, Jo went through something of a sea-change around autism sucking it a couple of years ago. I remember it, BECAUSE HER CHANGE OF HEART HAPPENED ON MY BLOG.

Yes, people learn and grow and change their minds. Nothing wrong with doing so. In fact, there is everything right with it. Imagine that! People looking at their lives and thinking, “You know, there might be a better way”! Yeah. That’s really something to call out.

As for the “negligent” parents of autistic kids who die — I imagine you’re talking about autistic kids who have wandered and died. I can’t even begin to speak to the ignorance of that comment. Suffice it to say that even parents of autistic kids have to go to the bathroom sometimes, and attend to their other children, and sleep, and cook meals, and do all the things that parents of non-autistic kids do. But hey, if you’d like parents to keep their autistic kids who wander safe from harm, by all means, please lobby your state and federal representatives for funding for 24/7 aides for autistic children whose parents — like any other parents — cannot possibly keep their eyes on them every minute of every day.

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Mary Southon April 9, 2014 at 4:42 pm

Thank you for your reply to Carlee, Rachel. Her anger, contempt, and disdain are not just unkind, they are unhelpful. She needs to take her anger elsewhere.

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Sharon April 8, 2014 at 6:34 am

’Im not quite sure how to reconcile that with your sympathy for spectacularly irresponsible parents of autistic kids — the ones who fail to properly supervise them (“neglect” is the word that springs to mind) and who tragically end up dead as a direct result of parental negligence (“criminally negligent homicide” would be the appropriate term here in NY).”

One of the most “spectacularly irresponsible” things Ive read on the intetnet in a while, and that takes some doing. I can only wonder what level of hatred lurks behind such a foul and despicable thought process. You might want to consider therapy.

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Mary Southon April 9, 2014 at 4:42 pm

Good for you, Sharon!

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Melody Calvert April 8, 2014 at 3:11 pm

Carlee, are you a parent? Does your child have autism?

I am a mother of two (4yo & 2yo), and very frequently I find myself longing for more sleep, more hours, more breaks (I don’t get ANY.), the ability to work on something from start to finish without being interrupted every few minutes.

When my son was 3, it sucked. 3 years old sucks. It’s fun sometimes, but he just got his voice and opinions and started talking back and arguing and telling me no or he doesn’t want to and OMFG I could scream. And sometimes I did. My sweet angel baby had turned into a kid with an attitude. He was 3 going on 13. I hated it, most of the time. A few times I said, “he sucks. I can’t handle this at all, where did this kid come from, what the hell?” The 3 year old phase SUCKED. He didn’t understand the things I was telling him weren’t meant to be a buzzkill to play time. He didn’t know I wasn’t being mean. He didn’t understand. The not understanding freaking sucked he still doesn’t understand sometimes. It. SUCKS. And you know what? That’s ok. It’s ok for things to suck sometimes. It’s ok to have moments of weakness and to break down.
Let me toss the cat out of the bag on this one:
PARENTING IS HARD.
Sometimes it’s easy, sometimes it’s fun, and sometimes it just freaking sucks. But it doesn’t mean I don’t want to be a mom. It doesn’t mean I don’t want my children. It doesn’t mean I wish I had another kid who listens to me. All it means is that it sucks. It will get better. It will get worse.
Parenting is like driving… sometimes it’s awesome and you’re driving down PCH on a warm 75 degree day with the windows down and the radio blasting your favorite song and you’re singing along to every word… and then other times you’re stuck on the 91 in a downpour with a flat tire.
Shit happens.
People are allowed to have hard days.
Parents are allowed to have “this sucks” moments.
Parenting is a 24/7 job, literally, and it doesn’t just involve watching your own children, but every other person your child will come in contact with. It’s overwhelming and stressful.
My son talks. My son can communicate to me different things, what he likes, what he doesn’t, what hurts, what scares him, and he’s 4… Jo’s son doesn’t do that. He communicates in different ways. He’s 10 and she’s still learning the ways he communicates with her.
Carlee, honey, it’s not easy. If she says sometimes it sucks, then it sucks for her. But that doesn’t give you or anyone else an excuse to treat her or her son like shit, or an excuse to hold an emotion over her head.
Haven’t you ever had an epiphany or ah-ha moment? Doesn’t it usually come after a “f this s” moment? After an “I hate everything and this sucks.” moment? And that ah-ha feels so much better because you were just so low you didn’t think you’d ever come out of the rut?
Have just a little compassion.
Remember, when your on the merry go round, that high horse you’re riding on comes back down.

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Joeymom April 9, 2014 at 2:59 am

Wait, I missed something. Where did we talk about “spectacularly irresponsible parents of autistic kids- the ones who fail to properly supervise them”? As the parent of a child who bolts, I’d really like to see what constitutes “fail to properly supervise”, as I have double-key bolts on my doors, alarms, and a 1:1 aide in school for my kid, and he still bolts and manages to escape buildings.

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nikki April 9, 2014 at 9:41 pm

Carlee,
I think in the US, the ‘culture’ surrounding autism parenting has currently so many very dark areas, that even if someone changes their discourse in the essential places, towards acceptance, real advocacy and love first and writes such a piece as this, then yes, it seems obvious, that for many parents, living with a diagnosed child is a process and this one certainly goes in the right direction. What more is, it is a call to other parents not to get sucked in by the propaganda of AS and the like, not to let the failures of ‘the system’ make them lose sight of what’s important. I think it’s a good, strong post that clearly illustrates where the process of acceptance must lead everyone. I am a cross reader of blogs and do not read regularly enough to remember and detect where people have maybe changed. I understand and am saddened by the obvious hurt the ‘cure & eliminate autism’ movements and their followers cause to their own children and autistic adults. But any parent who is on the right side, who puts love and respect first and their own entitlement to a “normal” child away, is a win for the cause of all autistics , advocacy and inclusion.
Attacking them on their possible change of mind, on attitude adjustments and failures of the past is an understandable, fed up, emotional reaction but closing the door to them like this is very counterproductive when you think that there are so many still that are sucked in by very toxic, dangerous propaganda from the other side of the large spectrum of the “autism community”.
This is a good, important post.

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April T. April 8, 2014 at 3:36 am

Scapegoating.

It’s pointing fingers because we aren’t emotionally mature enough to recognize in ourselves how to focus our feelings and respond accordingly.

It’s finding a target to outlet and saying “screw” everyone who doesn’t get it.

And it IS a journey.

I just wish some people wouldn’t shred the accelerated ticket you hand them to acceptance and living with joy for the life they have instead of the life they “wish” they had.

No one is guaranteed a retirement.

NO ONE.

You could save all your life and hope to retire on millions and die in a car accident two days before you retire. You could fall from a three story balcony trying to get away from a fire and your retirement could become the finances you use to pay the medical bills that keep you alive despite your broken back.

It’s saying “life handed me this–I will live it to the fullest and I will use whatever tools I have to help others do the same thing.”

Life is being too ignorant to take the hand that is trying to lead you to acceptance and peace in yourself. Life is being the person watching the ticket get shredded and thinking…”sucks to be you and I hate to be the person who you refuse to better yourself for.”

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Britton Swingler April 8, 2014 at 11:43 am

I would love to comment on Carlee’s stunningly insensitive comments except that, like her, I also do not have an autistic child and can no more speculate on what my emotions, unravelings, shortcoming, victories and turns-of-thought and perspective might look like if I did than if I speculated about how I might feel after sticking my foot in my mouth
just after stepping in a nice moist pile of doggy doo-doo.

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Zoey Roberts April 9, 2014 at 2:27 am

As an autistic adult and advocate activist with a few autistic family members I thank you for accepting is as we are. Bless you as I wish there were more parents standing up for rights. Thank you! :)

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Michelle Dracoulis April 9, 2014 at 9:25 am

I recently wrote the following to share my feelings about my sixteen year old son. He has Aspergers and I wouldn’t have him any other way.

My son is on the brink of manhood, and the urge that I am feeling right now, the urge to push, is no different to the urge I felt the night I brought him into the world. He is sixteen and ready to embrace his adult life and I am acutely aware that now, this moment, this hour, is my last chance to help him to truly realise his dreams. I am also aware, in a hurt, small and egocentric corner of my mind, that every success he achieves and every goal he reaches is drawing us closer to the moment that I will have to let him go. The same as the night he was born and he lay small, perfect and wrinkled only inches from my side – but no longer connected, no longer inside me and as prone to the whims of the world as any that walk among us. I know his heartbeat, I know the smell of the top of his head. I know that he feels safe and secure, comfortable in our love as an old shoe. ‘Home’ is an always concept for him, everything ticking along as always, but when he makes his bed that last day and walks away for good, I will be left to prowl empty halls, devoid of his laughter and spirit.
My heart has always reached out to the parents of children that have passed by injury, illness or misfortune. I didn’t understand, when counting my blessings and holding my own, that we all bury our children – in photo albums. We all end up with precious memories, bits of worn clothing or bedding and no little hand to hold. I miss you my sweet baby, but I’m ready to push, and I’m so excited for you – the world is a wonderful place.
It just hurts to know that I will be walking away from this delivery empty handed….

By Michelle Dracoulis

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Robert Vincelette April 9, 2014 at 10:40 am

In American commercial culture, how much money you make is the sole measure of your character, integrity, morality, and even your sexual attractiveness. If you are poor it is automatically your fault for not being competitive enough to make someone else poor in your place. If you are one of the 700 homeless people who freeze to death every winter you deserve it for being less fit to survive in the rigged job market. This is the instrument of racism against autistic people who no matter what they do will never be deemed good enough to be hired at a living wage. If you are autistic it takes a doctorate to achieve the economic opportunity of a normal person with only a GED.
But the autistic are treated as mental defectives and society, because it is stronger and therefore presumed morally superior, can be as unfair as it likes and never have to answer for how it treats those less able to defend themselves.

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Hank April 9, 2014 at 1:19 pm

I have posted this on the facebook page I run dedicated to Max and Hank of the show Parenthood, because I have tried to tell people the same thing when they rag on Max or Hank… maybe it’s a show to them, but it reflects an attitude to me, and one that I hope is someday corrected in our society

https://www.facebook.com/ParenthoodMaxandHank

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Cheryl M April 9, 2014 at 2:56 pm

I am new to this blog but I need to respond to what Carlee said. I would just like to say to you, that you can take every precaution in the world and still have your child get away. It can happen with a “normally” developed child (although I hate the word normal because none of us is). If you are a parent, and I’m guessing that you’re not (if you are, you have disillusioned yourself into thinking you’re perfect somehow, and I pity you for trying to maintain an unachieveable standard), you would know that things can happen in an instant. Like you turn your back for 5 seconds and your child wanders out of sight at the mall. This happened to my husband and I once when our “normal” son was two years old and it was one the most terrifying moments of my life. He is now almost 19 and somehow survived my negligent parenting but I digress. My point is, not all parents whose child gets lost are negligent. Maybe if you were the parent of an autistic child you would get it, but you obviously don’t. You can’t judge something you’ve never lived. It’s like childbirth, you can’t understand it until you’ve experienced it. You can read all the books you want and watch or listen to all the programs available and still never be completely prepared.
It’s Not Autism’s Fault Other People Suck
joashline.com..

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Chuck April 9, 2014 at 3:33 pm

Hi I’m Chuck. I am 46 years old and I am autistic. My father taught me that people do not want to be around me,…my stepfather, that I do not want to be around people. My mother, that there is love and acceptance in the world, that as a man I will have to stand on my own but I always have a home to come back to, and that I can accomplish anything as long as I stay determined and focused. They were all valuable lessons as they are all correct.
I have Asperger’s Syndrome and I am very “High Functioning” so many of the issues parents of autistic kids face I have limited experience with as we are all so different. But I can share some of my own experiences that your child may have to look forward to. I am a weird guy, odd, a really strange dude…different. These are the terms people use to describe me and I do not mind that at all. I do not have many friends but the ones I have are good friends and appreciate me for not being “normal”, lol.
I find my peace working with my animals, I groom my horses and play with my dogs, the level of acceptance they have is far greater than that which people display. Stemming, which I was beaten for as a child, is no longer needed when my hound is in my lap. Petting her head and scratching behind her ears is very calming for me… IMO animals are a blessing for those with autism as they seem to look into your heart and see who you really are rather than judge you based on how you interact with the world.
Holding a long term job is difficult as I say things which people find offensive or insensitive on a pretty regular basis. When I was a child there was no Autism diagnosis, nor Asperger’s Syndrome,…so throughout life I have just been referred to as an asshole. From my perspective, I always wondered how someone could find the truth so offensive or insensitive….I was told to always tell the truth. But apparently telling your female boss, “God damn you have a really fat ass” is considered inappropriate in the corporate world,…..who knew? From my experience asking your supervisor if he has a learning disability is also frowned upon.
Relationships are hard to maintain. Apparently females of our species want/need( haven’t figured out exactly which) regular expressions of affection and emotional reassurances. While we with autism experience powerful emotions,…expressing them is very difficult…and often from our perspective they actually ARE being expressed. ” I come home every night, I go to bed with you, I go to work every day to provide food and housing, I am not out looking for another woman”…all of these things say I love you and want to be with you. So I have to set reminders on my phone to give unrequested hugs, an occasional kiss, or to actually verbalize “I love you” a couple times a week. It appears to keep her happier but it took me two wives and a dozen girlfriends to figure it out.
I have two sons and I have to admit that I am not a very good father as I am irresponsible and cannot hold a job very long, but I am the best “Daddy” in the world. My boys and I always have fun together. My 22 year old calls me when he needs to talk to someone or if he needs advice. My boys are both NT and I consider that a blessing. But I do for them that which my mother did for me. I let them know I love them, that they are safe with me, and I tried to teach them a quiet confidence to face the world with….then I taught them my code of honor. Treat people with respect, work hard, and always do the right thing…..even if it hurts you to do so.
As a parent to an autistic child you have a tough road…for the rest of your life. But your childs road is tough as well and they will likely outlive you. Just as any parent you must prepare your child for the world the best you can. I am Caucasian, my eldest son is black…so not only did I teach him about hard work and sacrifice, but I also taught him about ignorance and hate….and how to see the difference. The issues you deal with are/will be, the same. IMO the very first step is acceptance. You must accept your child for who they are before they can accept themselves for who they are…it is paramount. Without self acceptance they will have an extremely difficult time coping with the constant rejection and exclusion life is going to give them.
My mother tells me I have always been a blend of man and child all rolled up into one big package,lol… another woman I love often calls me Peter Pan…all I can say about that is….BANGARANG!!!

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mark April 9, 2014 at 8:06 pm

Hey Guys
I’m 68 and my daughter is 37 and severely autistic as in non verbal, pica, diapers, no fear, etc. She is still the love of my life and I am totally involved(2 phone calls a day to her group home, on the board of directors, autism society,……)She is so innocent and fun to be with and I am always thinking about her whether I’m with her or not. And I don’t have a clue as to whether she thinks of me when I’m not there. That part is pretty hard.
My point is …..our children grow into adulthood….they touch many people…..there is so much we don’t know about their inner thoughts
I am a very fortunate person

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Yecats April 10, 2014 at 4:28 am

I am sorry that people are so insensitive and yes mean people can suck it.
And it is certainly not autism fault or autistic peoples fault that some people suck.
And I am sorry to the bottom of my heart that you have had to experience some of what you wrote.
I hope you can answer a question for me- one that comes from a general curiosity and want to educate myself from a different perspective and not at all from a judgmental place. One thing you wrote about was the separation of autistic children in schools. (This point is probably obvious, but to state the obvious let me just say I don’t have autistic children). And of course, having children shuffled in a room with no interaction. ect is awful and wrong. But isn’t it also true that children on the spectrum have different learning needs? So I am curious (truly curious not judging) why it would be good for the two sets of children to be in the same classroom. Wouldn’t it negatively effect both sets of children? Wouldn’t both sets of children end up frustrated and not learning? Now please know I am not saying that autistic children are contagious or any such bullcrap… I am truly interested in your feedback because I feel like I am missing something. My children attend public school. It is loud, noisy, often aggressive. The lessons are ridiculous and, i have to say, most often confusing and useless. The teachers are well….. fed up, impatient and not trained to teach the material they are being forced to teach. I think of a kid on the spectrum thrown into this environment and my heart hurts a little for them. Hell my heart hurts for my kids and they don’t have sensory issues….. I am on the PTA of my school so I would love an education so I know how to fight for the kids in my school on the spectrum, that’s all.

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Tina April 10, 2014 at 2:02 pm

I agree. It is not autism’s fault others suck. I do not have kids myself, but have HFA and work with some kids once a week who have more sensory issues and classic autism. I have had to for sure bust my expectations of them and take them to a new level.

I know that I am more likely to have a child with autism and would not want my kid to be treated badly because of it,

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diane April 12, 2014 at 11:03 pm

I live in Australia and even though we still have people who look down upon people on the autism spectrum the majority of people show compassion and respect for people with autism and other spectrum disorders. In our school system we have special schools for severely autistic children but most of our Autistic children are in main stream classes or are in special units that are located in main stream schools .These units allow the children to have their break times with the rest of the school and to participate in whole school activities so they are a part of the main stream schooling experience. Funding in Australia is still not enough but it does provide some funding for limited teachers aide help in the classroom(I am an aide currently working with an Autistic boy in a main stream class) .
We also have many organizations that offer services free of charge that provide support and information to parents, teachers etc. to help give strategies to make life a little bit easier. Most states in Australia also offer early intervention programs for children to prepare them for school and life in general these services are also provided at minimal cost or free.
As a mother of two children with Aspergers I often feel frustrated with some of the low funding in Australia but after reading your post I feel a lot more fortunate to have the resources that we have.
I am not sorry that I had my sons or feel they are a burden as they are the most beautiful, happy, funny, compassionate tolerant human beings that I know and they are my pride and joy and I thank God everyday that they were given to me.

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Emily April 13, 2014 at 12:42 am

While I enjoyed reading the blog – I think it’s important to really think (in an empathetic, non judgmental way, which this blog author has not done) about where this parent was coming from with their comment.
I am the mother of a small child with extremely severe, regressive Autism, and all I want to do is give the parent who left the comment above a HUGE HUG!
Parents can be pushed to the point of feeling so exhausted, so hopeless, so fearful, so resentful, so desperate that they will naturally say things they probably don’t really mean – or maybe a small part of them *does* really mean what they say, and that’s totally OK…it’s totally human, totally natural – and it doesn’t make them bad parents simply because they’re being honest about what a nightmare ASD can actually be.
I bet you anything the parent who made this comment is loving, responsible and does everything he/she can for their child – and I also bet they were in a terribly dark place (due to exhaustion and other factors) when they left that rather valid, fair comment. My heart goes out to them. To insinuate this parent doesn’t fully love their kid (which this author has ignorantly done) is cruel, unnecessary, baseless and, well, pretty hypocritical. Parents suffer just as much as the kids I’m afraid.
Let’s promote acceptance and understanding for ENTIRE FAMILIES affected by an ASD diagnosis, not just for the child diagnosed. This has motivated me to write a blog post in response which I will be doing soon (silenceandthespectrum.wordpress.com ) xxoo

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Michelle April 13, 2014 at 12:23 pm

The lifelong impact on a child whose parent rejects him is much more severe than the most intense autism could ever be. Such low expectations, disappointment, and selfishness close the door on potentials that are often unknown until the young person has been an adult for a while. Too often, parents, medical staff, and other professionals also confuse comorbids with autism itself, and blame autism for everything, which shuts the person out from real and effective care. I SO agree with this article and meme…. thank you for posting it!

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Jeanene D April 13, 2014 at 1:14 pm

I thank God every day my mom fought for me when I was a child. From her I learned to fight for my kid. To my knowledge my kid is a 4th generation Higher thinker. We do not conform to societies expectations , we learn live and love on our own terms.
I will never understand why anyone would institutionalize their own children..maybe just maybe visit the child on their birthday…to die unloved alone , to never have what everyone else has …to understand but never able to make you aware I am here …right where you left me . Sadly I know a family that did this to their son ..he died at the age of 26 ..alone, surrounded by employees not family.
I am very aware. My soul hurts daily because so called normal thinking people are NOT.

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Melissa Mitri (paragal) April 13, 2014 at 4:33 pm

I agree with this post. I’m a 28 year old on the spectrum and have had to work hard to carve a niche out for myself. I know that I will have trouble in certain workplaces due to their corporate policies not allowing job coaching. Well, that, and the fact that I’ve had bosses who equate autism with not being able to do ANY job or anything. I was mainstreamed all my life and know that the only limits on what those on the spectrum can do, like anyone else, is the limits that we put on ourselves. Others may try to limit us, but, like the boss I had that I mentioned, they will fail. The bosses I have now are of the mindset that if any of their employees-disabled or not-want to try something out to see if they can do it, they are allowed to try.

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autism mum87 May 30, 2014 at 7:55 am

The more severe your autistic child is, the harder the state agencies will fight against the families. Most of the mission statements and promises made by these agencies charged with the duty to “care for disabled” are a joke. It’s window dressing. It’s easy to pretend you are a government agency there to “help” the disabled, but if the disabled person is too complex for the agencies, they will more time denying services because it’s really all about money. It’s never about the unique and individual needs of the autistic person.

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