Autism is NOT one size fits all

I want to preface this post with a few things. I’m not attempting to force anyone to see things my way. I realize, that we will never all be on the same page. However, what I hope to do is point out a problem within the Autism community that contributes to the rift that has occurred between parents of kids in different places on the spectrum.  I think that we need to be able to show a basic level of respect for each other. Everyone’s experience with Autism is different. It’s important to realize that one person’s experience with Autism does not mirror another person’s by default.

Update: This whole thing has gotten out of control. I never said anyone was “dishonest” as I have been quoted as saying. When I say Autism and Aspergers aren’t in the same universe, I’m referring to parenting and challenges and I’m doing so in the general sense. I realize that this is not always the case, but I was simply trying to make a point. This was never meant to be taken as a blanket statement and certainly not in a diagnostic way. Something that people seem to be missing is that I’m speaking to my experience. I’m very aware that everyone’s experience can be different.  I also know how challenging Aspergers can be. I want to make very clear that I was never trying to create division as has been suggested and I’m certainly not complaining about my family. 

What I find most disturbing is that some people are so quick to dismiss my experience simply because they haven’t been on the receiving end of judgement like this. It’s important to be aware that simply because you haven’t experienced something doesn’t mean it doesn’t happen to others. Many of you have shared your stories either via email or in the form of a comment. I know that I’m not alone in what my family deals with. Sometimes all the positive attitude in the world can’t overcome the overwhelming challenges some of us face. Having people criticize us for feeling the way we do just makes things all that more difficult. I know that my attitude no matter how positive or negative it may be, will never change the reality I find myself in. I’m not a negative person, I never give up and I keep my family afloat. Saying anything to the contrary, shows that you don’t really know me or our story. 

I’m glad that some people seem to have never experienced the criticism that I and many others have faced. No one should ever have to deal with that. However, having my experience discounted simply because someone hasn’t had that happen to them, is not right. I really am saddened with how this has all gone down, but it doesn’t change anything. No one has to agree with me. 

I can’t please everyone and this just happens to be the first time something like this has happened to me. I’m prepared to move past this and I hope others can as well. 

This is my story and my family’s truth based solely on things that have happened directly to us. I will not apologize for what I wrote, however, I’m sorry that it was taken the way it was. I never intended for it to be picked apart and scrutinized. I’m sorry anyone took offense to this. That was never my goal. 

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I have been thinking about something lately. I know…hard to believe…right? Seriously though, I want to speak my mind for a few minutes. You will either love me or hate me after this but I really think this needs to be said.

I have noticed a lot of criticism lately aimed at parent’s that tend to not see the positive side of Autism. I really am dumbfounded by the lack of compassion individuals in the Autism community can have for one another. I realize that my blog is sorta unique in the sense that I don’t try to paint a positive image where there isn’t one and I’m not afraid to address thereality of how Autism has affected my family.

Many of the Autism related blogs out there are really upbeat and positive…and that’s cool, if that’s their experience. I just wonder why people are so afraid to be more honest about their experience, especially when that experience is more negative?  I say this all the time but I’ll say it again. It’s so vitally important that we share our stories, both good and bad. The only way people (including those within the Autism community) are going to ever recognize and acknowledge that there is a difference between raising a child with Aspergers and raising a child with lower functioning Autism,  is if they know it’s there.

If we don’t speak up, no one will ever hear our voice and the world will go on seeing only one part of what Autism is.

I think it’s important for people to be as transparent as possible when it comes to something as misunderstood as Autism. I say misunderstood because the general public, heck, the special needs parents within the Autism community itself, seem to lack the understanding of just how profoundly dynamic Autism can and will be.

I know I sound like a scratched record, but Autism and Aspergers aren’t even in the same universe and I can comfortable say this having children in both places on the spectrum. What happens all to often, is that Aspergers becomes the public face of the Autism spectrum and it’s only voice. This is a huge problem, especially for families like mine. As a parent to 2 boys with Aspergers and 1 with Autism, I feel very comfortable saying that.

I hear, so often from people with an Aspergers child, “why are you so negative”, “Autism is a blessing”, “my child is mainstreamed and doing great” or “you just need to be more positive.”..

I swear to God, if I hear that one more time my head will explode. This is exactly why Autism and Aspergers should be considered different disorders. I know I won’t make a lot of new friends by saying that but I really don’t care. While Autism and Aspergers share some of the same traits, raising a child with Autism and raising a child with Aspergers isn’t even in the same league. Now, before you flood me with hate mail, remember, I have a child with Autism as well as 2 boys with Aspergers, so I understand the difference.

Now, PLEASE hear me when I say this, I’m NOT saying that raising a child with Aspergers is easy, because it isn’t. I’m completely aware of this fact.

While raising a child with Aspergers is not easy, it is however, very different than raising a child with Autism.

Raising a child with Autism is very often infinitely more challenging. I understand why Aspergers was added to the Autism spectrum. I also understand why it’s going to be removed in the next edition of the DSM.

Honestly, I don’t personally care, one way or the other as I have much bigger things to worry about. However, and this is a big however, that doesn’t mean I don’t recognize this as a problem. I see and hear almost everyday what the general public and the Autism community itself, thinks Autism is. I find it disturbing that people within the Autism community don’t realize there is more to Autism than Aspergers.

I’m going to say something, with no intentions of offending anyone and with the up most respect.

If you think that raising a child with Aspergers is the same as raising a child with Autism, you have no idea what you’re talking about. It’s so unfair to judge a parent struggling with Autism, for not being more positive. The reason they aren’t all sunshine and roses is because many times, there is no positive side to Autism.

Why is this so difficult for people to understand. It’s very clear that many special needs parents out there don’t acknowledge the difference between raising a child with Aspergers and raising a child with Autism, let alone recognize the fact that there is difference in the first place..

Autism is by definition, a spectrum disorderMeaning that Autism is a condition that is not limited to a specific set of symptoms but can and will, vary infinitely within the continuum.

This is why Autism for you is NOT Autism for me.

Look, comparing an Aspergers child to a child with Autism really won’t get us anywhere. I do however, think that it’s vitally important to understand that there is a difference and aprofound one, at that.

We need to remember and even acknowledge these differences and not crucify those that are struggling with something you simply don’t understand. Doing so would a step towards becoming a well informed, special needs parent, and a better, fully unified Autism community.

 

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Norbert

Please see "No justice for severely-autistic adult in california" to see what can happen to our autistic children when they get older, and we can no longer take care of them.

Stacy Romaine

Got here through Sqidalicious which I came upon earlier today when looking up Autism-focused iPad apps. I happen to totally agree with your post, but decided to post that HERE rather than over there. I am also the parent of a severely autistic 17 year old and an aspie 19 year old. I think you nailed it on the head when it seems like lately it seems like Asperger's is the "public face" of autism. It's like I live in NY and others assume its New York City, right? Cuz that's all ppl think about when they hear NY. But for better or worse (some would disagree as to which way) the boonies of NY where we live surrounded by cornfields and tractors driving down the road is not anywhere in the same rhetorical zip code as NYC! Although, yes, technically I do realize they are in the same state… 😉

Lost_and_Tired

That is a really good example. Thanks for sharing that perspective. The NY vs NYC analogy makes a great deal of sense and I think that most people could relate to that. 🙂

Thanks for sharing your opinions. Very well said.

Amen! I reposted this. I totally agree with this and very well written. Thanks for saying what so many wont.

Emma

I think you've said 'Autism is different for everyone' and 'Autism and Aspergers are always very different from each other, Autism being more negative, Aspergers being more positive' which sort of contradicts yourself.

I have one child with Autism and one with Aspergers. In some ways, the child with Autism is higher functioning (he doesn't have the anxiety, the meltdowns, but he has the language delay and she (the one with AS) has advanced language). Aspergers has been and is the most difficult, exhausting in our home.

It's unfair for parents to say 'Aspergers is hard, but it's not as hard as Autism, because that's not always true. We have to think and talk in needs and difficulties, because we ALL know that the specific labels do not accurately describe those things for people on the spectrum, no 2 Aspies and no 2 Auties are the same.

Lost_and_Tired

Emma, you make a very good point. Again, I was speaking to my personal experience in dealing with both ends of the spectrum.

The point I was trying to make was that different people have different experiences. Some people say things like \”Autism is a blessing\”. While that\’s great for them, not everyone feels the same way. Not everyone\’s experience with Autism is a pleasant one. I\’m coming from a parents perspective.

I have had people tell me that it\’s not the Autism but my attitude that is the problem. People that take that attitude simply have no understanding of what families like mine are going through.

I was trying to address that issue.

Again though, you make a really good point. Autism is different for every person and sometime Aspergers can be more a parenting challenge. You are absolutely correct. I was speaking more in a general sense. I was intending it to be a blanket statement.

Thank you for so tactfully sharing your thoughts. You were very well received and I look forward to hearing from you again. 🙂

Lost_and_Tired

Edit: I meant to type: I did not intend this to taken as a blanket statement.

Sorry about that. The autocorrect is killing me. 🙂

Emma

Thank you for responding so well as well 🙂 It's a snake pit of experiences and ideas and assumptions and judgments out there. I think the most important thing for us -as a community- to do is 1, listen to our children if we are parents 2, listen to autistic adults and teenagers, because they have a LOT to teach us about our position and how it affects our children as they grow into autistic adults and then 3, learn how we can all work together to support each other and teach others about Autism as a spectrum and about Autistic individuals as individuals.

Lost_and_Tired

🙂

Cindi

I completely agree about the difference. They are so far apart that before I knew of Aspergers and other more mild versions I bucked at the thought of being told my son was autistic because I had worked with the severe and his life and behavior did not match that. The whole spectrum is very hard to deal and live with, but I am one that is more than willing to admit that full blown/low functioning is the hardest of them all.

I guess what I am trying to say here is that you have my support.

damnedeitherway

Brilliant post! It can be exasperating, it's one big mess! I'm in the interesting quandary as my son was non-verbal, then verbal, dx with HFA then a second opinion later AS. But my own personal opinion he's just HFA (I thought speech delay was part of the DSM guide ASD), and when saying this to other parents in my circle of the Autism community, I was later criticized for using the HFA dx as an "out" for his negative behaviors, as well as "welcomed" to "the club" when surprised by the AS dx, advised to keep the HFA dx so that we could get "more" from the system, then warned by parents of AS kids that I'd be fooling myself if I thought he was AS because they have expert testimonies of what AS really is, and finally preached to about biomedical interventions that I wasn't doing enough of so I could recover him altogether. We could all sit in one room and stare blankly at each other. I've known parents of AS children roll their eyes when told they have it easy, parents of HFA children grit their teeth when told they don't have it so bad, parents of LFA or Non-verbal children wring their hands when told they should try meds and diets and parents of recovered children cringe when told they are in denial – some parents need to be told the silver linings, others need another to commiserate with, others who just want to hear themselves talk and others who want an honest 3rd party observation. Everyone's experience is different – and I think that the best kind of support in the Autism community is the kind that we as parents ask for and beg that others "honor" it – it's hard enough when you get advice/support from the uneducated typical public (I lost count of the number of times strangers have said, "I wouldn't tolerate it or spare the rod if I were you". As for me, I like to hear myself talk, but have no qualms asking for other's opinions at my discretion. I don't feign rainbows but I don't fabricate dark clouds either. Of late, my son conducted his own science experiment, of his own initiative – gave gifts to a few friends, then was able to relate to me how he thinks something is wrong with his brain since he couldn't handle all the visual and audio details he experiences and wanted my help and yet, in the same week, he has regressed from being potty-trained to getting to the bathroom too late and wetting and soiling himself again due to "I really got distracted and didn't hear my body tell me it was time to go". when all I want is to merely vent frustration before I'm bombarded with judgmental jeers of what I'm doing wrong or even with generic cheers of what I'm doing right – when all I wanted to do was be "allowed" to just say out loud, "It shouldn't be this hard!" Also, when I have a moment of encouragement, I just want to have a little turn with saying, "I'm so proud of him!" and enjoy it without being forewarned "not to get my hopes up" or patronized with "he's going to be all better soon". My 2 cents…

Cindi

thank-you ((hugs)) Well said, I agree 🙂

Jen

For us, no, Autism is not a blessing. K is considered HF (not AS), but the only thing that makes her that way is the fact she is verbal, even though she isn't on par with her peers. Apparently, talking is the one thing that separates the low from the high. My kid still takes off at the mall, but she can scream at me as she does it. Woot. Now, I can see why some would be offended by this. I have personally met kids with AS who are SO not high funct. At all. Sure, they are very verbal, but it's just a stream of words and they might as well be non-verbal b/c there is no back and forth dialogue. At my daughter's social skills group, there was a boy with AS coming in after us who couldn't stand my son's voice. He tried to hit him b/c of this. So, for him, AS was not easy or high funct. I am sure his parents struggle just as much as someone whose child is considered lower funct with classic Autism. It is important to realize that AS itself is a whole spectrum, and while some might see it as a blessing that in no way inhibits their lives, there are those who will always be profoundly affected and for which it is not a positive attribute. We can all only speak from our own experiences, but we should avoid generalizations. I do get what you are saying in this post, but I think it almost takes away from the hardships those raising a child with AS or HFA face. Trust me, K might be HF but she has no friends, is aggressive, hates her life and I fear she might try to hurt herself, still has deficits in communication, and anxiety through the roof. Our marriage often falters, our friends fall away, and we are burdened financially. I think some are just sensitive to the the idea that HF somehow equals anything close to easy, or easier….

As far as how much people admit…well, some people want to protect the privacy of their families. I try to be very open on my blog, but at times have held back. Above all else I need to keep my family safe and, yes, there are those out there who would love nothing more than to pick up the phone and dial CPS. If people want to just share the positive parts, it is probably b/c sharing the tougher things is scary. It makes you very vulnerable. And there are those that are just more positive, personality-wise, and that might be the path they choose blog-wise, too.
My recent post Miles to Go

Laurie

Jen: I love your response and totally agree that people often don't share because they are scared–too bad that this is the case. Also, I couldn't agree more that higher-functioning kiddos are not always easier to deal with nor are their lives any less disrupted by autism or even Asperger's. My son has been both nonverbal and verbal, and just because he now has words, he is still frustrated to reach an understanding with those around him…as we know, communication is much, much more than verbal language. Our lives are harder than they might have been without autism–and his life will maybe always be complicated; I have to focus on his strengths–as he has many–while looking for supports to shore up his needs…that's how I choose to get by.
My recent post Entry Fifty-One: Outing Autism (when to tell your child, what to tell others)

Cindi

well said. I'm right there too with my son in a lot of ways…

Laurie

…however, since he came from a place where he was non-verbal and we have been blessed by some amazing developmental and emotional progress, I look at things differently. We choose to focus on the positive for him; because he is so aware. He hears, thinks and feels and already knows the struggles of living in his skin and in his own mind. We can reflect his current feelings back to him ("I know it's hard when…"), but to reflect bitterness, anger or a bleak future is, in my opinion, not in my child's best interest. I don't know what his future will hold. He has made progress…but he still struggles on a daily basis. It is hard and some days it sucks, but I choose to stay on the positive side. No judgement at all to others…just my choice for now
My recent post Entry Fifty-One: Outing Autism (when to tell your child, what to tell others)

Lost_and_Tired

More power too you. Look I'm positive as well. My kids have made great progress. My whole point was that people shouldn't be afraid to share the negative experience as well. For years, and we have been doing this for over 10 years, we hid the struggle from family and friends. We didn't want anyone to see the struggle we were having on a daily basis.

We finally decided to stop hiding things from our family. They couldn't understand because we never let them see. I'm not saying anyone is hiding anything. I was simply trying to make a point and this whole thing has gotten out of control.

Thank you for sharing your opinion in a respectful way. I appreciate your opinion and value your perspective 🙂

Laurie

You are right. There are people out there that sugar coat their entire life…and it does make it harder for other people to get clarity. If we don't show them the complexities of having this child- how it completely impacts our entire lives, we really are doing the community-at-large an injustice. So definitely, I get what you are saying in that respect…I think we are on the same page. Even if you don't love the autism, I can tell by your posts that you love your children and appreciate all of the greatness that they have to offer as people; it's those moments of greatness–even if just a glimmer– that we celebrate.
My recent post Entry Fifty-One: Outing Autism (when to tell your child, what to tell others)

Laurie

I definitely hear what you are saying. My son has had both diagnosis; he was non-verbal but now he is not. It is still a daily struggle- although he uses words, his words are often incongruent with his body language and he is certainly still confused by his role in the world. He sometimes cries, breaks things, harms himself and attempts to harm others. At this point, he is FULLY AWARE that he is different…just this fact alone can be torterous to him at times. These are the days when it is overwhelming…(more below)

My recent post Entry Fifty-One: Outing Autism (when to tell your child, what to tell others)

D. L.

What comes through loud and clear in your post is that for you, based on your experience with your own children, there is a world of difference between autism and Asperger's; and for you, autism is so much worse than Asperger's that there is nothing positive about it. I am very sorry that it has been so difficult.

Lost_and_Tired

Thank you for that. 🙂

ejwillingham

This post bothered me considerably, too much to post in a comment, so I've posted my response here: http://daisymayfattypants.blogspot.com/2011/11/au

Accidental Expert

I'm right there with you. I blog about our journey with two kids on the spectrum and some days it just ain't pretty. I write about what is going on, the good, the bad and the ugly. And lately we've had a heck of a lot of ugly.

I also agree that every child on the spectrum — whether having autism, Asperger's or PDD-NOS — is so very unique. You're dead on when you say there is no one size fits all. And we definitely can't judge other's because their experience is different from ours. Keep writing. Your perspective is very valuable.

Shannon Marshall

<3 this one rob!!!!!! it drives me crazy sometimes when people try and say they know how i feel when their child has asperger's and has anxiety and talks incessantly while mine has SEVERE AUTISM AND IS NONVERBAL. how is that at all the same? LOL i'm so ready for 2013 when the changes to the diagnosis goes into effect.

Nancy

Amen to this post!

Lu PHouston

Thanks for this posting. I whole-heartedly agree with you! I am also sick and tired of people making incorrect assumptions when I mention my daugther's autism or my son's disabilities. No time to get into it now but you are right on!

Jenna

Great post. Too much going through my head and heart right now. This comment would be forever long. I think the world of you and these boys are so lucky to have you as a Father.

sjc

Completely accurate post. Life is very difficult with a child with Autism. Because my son looks perfectly normal, and is exceptionally beautiful, people think "It can't be that bad." It is that bad. We fought long and hard to get him a non public placement at an excellent private school run by the very best experts in the field of Autism and still he is non verbal and needs eyes on him at all times. It breaks my heart when other parents are greeted by their child smiling and describing the picture they made. I love my son more than anything in this world but difficult doesn't come close to describing caring for him.

Toni Smith

Rob I love your blog posts. You have a tremendous gift of being able to express yourself via the written word. I want to say how much I admire the things you write about. I ENJOY reading the not-so-happy aspects of the autism life. Everything about autism is not hunky-dory painted with roses. It's refreshing to hear someone say this. It hasn't been easy for my family and it's hard for others to understand this. What drives me crazy is I have family members who tell me that my son isn't as bad as I think he is however they are only seeing a very small aspect of him. Keep up the good work Rob! You and your wife have my utmost respect.

Israa

thanks you for this post … i totally agree with you . autism ruined my life but Asperger did not …. i was feeling very angry and frustrated because i was feeling that I could not find anybody who understands what I`m going through .
thank you for speaking out my feeling better that I do….

Jillian

Rob, THANK YOU for writing this! I cannot agree more and in my opinion, Autism is NOT a blessing, it is a frustrating struggle through and through. Everyone needs to cut the crap and be real; Autism is a challenge, it is heart-breaking and it is not a picnic. I have been told that my Autistic child with his ewok babble is actually speaking to angels, I have been told that "God doesn't make Autism", I have been told many things that are a sugar coated way of saying that Autism ain't that bad. Well, it is THAT Bad and it is horrible. Do I love my child? YES. Would I change him? YES. I know my child is locked inside and he is dying to get out. He wants to express himself and he wants to live a life without communication barriers. Okay, end of rant. Thank you for being real. 🙂

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