Friday, September 30, 2011

Too Many Feel Good Stories On Autism....And.... Please Don't Send Me Anymore Autism Links!




(originally written & published on September 30, 2011)


People are always sending me links to feel good stories about autism. They mean well, but they don't know the true side, the tough side...

And lately when autism is on the news it's a feel good story about a high functioning kid doing something great and profound. And I think that spins autism in too positive a light. It makes people think that autism is not that bad.

"They’re just a little quirky like the Asperger’s rocker on American idol a few years back" people might think.

I think America needs to see the dark side of autism more often, like my son, the nonverbal, non-potty-trained 8 year old who bangs his head, won't eat, has crazy stomach/ bowel movements and severe ADD & ADHD on top of his severe autism.

I like to read the feel good stories too...but the feel good stories are all you hear/ read/ see about autism in the mainstream media. And I honestly think when we are fundraising or trying to get more government $$ for autism if all people know are the feel good stories, "why give them research $$, they're just quirky kids...." the kid that scored 15 points in the basketball game, the aspergers guy on amazing race, etc..." 
I know there's always a lot of controversy around Autism Speaks and I'm NOT a fan of a lot of what they do, but I will say this. I have no issues with AS with the way they portray autism. Others in the Asperger’s community feel that AS doesn’t represent them, and maybe it doesn’t. But it does seem to represent those with severe debilitating autism. My son has SEVERE autism...

And I fall into this same trap myself of posting semi "feel good" stories.  A few weeks ago I posted a NY Times story (written by Amy Harmon) on my Facebook page about young adults with autism transitioning into the work force.  The article focused on a 22 year old young man named Justin with autism who's in the "middle of the spectrum" struggling to find a place as an independent adult.  I posted the article because I thought it was interesting and kinda inspirational, but something always kinda bothered me about it.


The Age Of Autism article gets into the vaccine angle quite a bit and I know there's lots of people on both sides of that issue.  But wherever you are on that issue, I think we can all agree that there's an autism epidemic in this country/ world and that there's TONS more people with autism now that there were a generation or two ago.

And I really like the way she describes her issues with this most recent NYT article on Justin. 

She writes...
(The NY Times author) focused her feel-good story on one young man who, despite his limitations, is working to live independently.  Justin struggles, as all ASD people do, but he's light years ahead of so many kids I know with autism.  Giving us a talented, verbal, intelligent young man like Justin neatly pushed aside the severely autistic people of the same age.  Harmon was good at describing the problem, but she offered us no solutions.  She calmly told us Justin barely talked until he was 10 years old with no explanation. Harmon gave us the rate of one in 100 with no alarm.  She noted that over 90 percent of autistic adults are unemployed, which is a scary concept considering the epidemic rate of the disorder.  Harmon wrote that autistic adults are out there in group homes or "living with parents."  Really?  I'm  still waiting for some reporter to actually back up that pretense by showing us the 40, 60, and 80 year olds living in those "group homes."  (And I don't mean someone with eccentric behaviors that could be passed off as autism.  I want to see the head-banging, rocking, non-verbal adults who are middle aged and older.) And I want a real journalist to find the autistic adults with a history where people remember that as a toddler they were talking and normally developing and who suddenly and dramatically lost those skills.)

Now I say...Rock on!  I totally agree!  Stop telling me that they are just diagnosing autism better! Find me the THOUSANDS of adults in nursing & group homes with debilitating autism! 

____

And on a sligtly different subject...I started this blog post by saying, "People are always sending me links to feel good stories about autism".  You know what else, people are always sending me links and articles about?  Music therapy or horse therapy or dolphin therapy, etc., etc., etc.

"Have you heard about that? I've heard great things about that..."

They're thinking that it's a way towards a cure or healing these kids...

And while my son enjoys music therapy and might love horse & dolphin therapy, we know it's just another fun activity and in the best case scenario he'll pay attention and maybe get something out of it... but we're not expecting something magical or miraculous to happen

Like when we got our autism service dog. We were extremely realistic in our expectations. We hoped it would help with some safety issues and maybe Kyle would build a relationship and have some empathy towards another creature. And it's worked out nicely. It's still alot of work but totally worth it.

But people ask me about the dog DAILY. And I can hear in their voices when they ask the questions that they were looking for / expecting a miracle.   Sorry, no miracles here!

If we can get our severely autistic son Kyle even 50% of the way towards that young man Justin in the NY Times article we would consider that a miracle.

Sorry for combining 2 topics in one there... I was on a roll...

Thanks for reading!  I'm anxious to hear your thoughts and feedback!

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If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the link above?  This way I can make a little money.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!

If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the link above?  This way I can make a little money.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!



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81 comments:

  1. Kudos to you and your wife! For fighting your daily struggle and for sharing it with the world. I have 2 boys w/ Aspergers and feel guilty for using any of the few services available because I've seen first hand through my amazing friends that battles they fight every minute of every day.
    Happy stories are fantastic, but they are just as rare as that 1 in 100. Reality is not sinking in fast enough about how severely this epidemic is going to affect our health care system, our work force, our future. We need more journalists like Anne to bring to light the intensity of what Autism is doing to our families and our communtties.

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    1. This is so sad. When will people see the difference in mental retardation with autistic - type symptoms and just autism? Most people with autism (like myself, my husband, and both my kids) to understand and have patience with them. If you have severe behaviors to deal with find a GOOD ABA scientist. They work wonders if you follow through on their training.

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    2. Suzie,

      I am a great believer in ABA and am currently getting my Master's in ABA. However, ABA helps with behaviors and routines, my son is 5, nonverbal, and also has SIB (self injurious behavior) and we have our BCBA for home (after fighting 5 months with insurance and feeling out loads of paperwork). This is not a cure, it to help manage his Fragile X/Autistic behaviors. He is also learning PECS, but we are working hard now to help him in the long run. Those with severe autism have less "feel good" stories out there for a reason. People like a happy ending. My happy ending will be my son eventually dressing himself, being potty trained, and being able to have some independence - which is not a hollywood happy ending. I don't dream of a cure, I dream of advancement in science to help manage the areas in his body that make his life so difficult - we are close. Fragile X research will help more then our Fraggles, Autistic kids, it will help with a lot neurological issues. My dream are PECS to have it's own language on Facebook and apps for McDonald's to help our kids mainstream easier. Things like that will help him have his own voice - whether it is verbal or non-verbal. For me I dream of a day where my son tells me he loves me, in whichever way works for him.

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  2. I'm kinda thinking if there was a "magic bullet" for curing the severest of those with autism that people would be lining up in droves and it would have been blasted over every form of media in the world by now. I would love to think of my son as possibly being "cured" in the future but realistically I don't suspect that will happen. On the horse therapy note...nope no miracles there but I will tell you there is something kind of magical about the way the horses interact with my son and also about the way it can flop his mood from severely nasty and uncooperative to a sweet somewhat happy "typical" kiddo if even for just a few hours. We don't go to standard horse therapy but have two of our own and while we did TRY official horse therapy we found it too structured and too demanding for him...the therapist was always trying to make him follow this rule or that or this instruction or that and threatening "no horse time if you won't listen to me" ugh....so now with our own we go over when we want...he gets under and around and close to and on top of our boys and he helps to brush and lead and feed and water them...it isn't all about getting on their backs or making them walk an obstacle course while working on his "core stability" (with CP that is an issue but I figure if he is having to make adjustments constantly during a slow walk through a field or around an arena while the horse is going around natural obstacles or in circles or whatever that helps as much as a "course") more power to you autism daddy...it is each persons individual journey and we have to do only what works for us

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  3. oh yeah...and see...told ya I would read it :)

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  4. Oh wow! I am a first timer to your blog and was actually drawn in from the moment I saw your minivan photo. Other than the fact that I have a blazer (oldie but goodie)that could be my photo! Your honesty is so so very refreshing. It's late here but I will be back...

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  5. Welcome Sheri! And if you're on Facebook check out my Facebook page www.Facebook.com/autismdaddy for the full Autism Daddy expereince...

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  6. thank you autism dad!!! I made a comment on an article last week...a feel good article! My son has severe autism...nonverbal,,freak outs,,,anxiety,,ADHD and extreme hyperactivity!!!!! PeOPLE NEED to see the other side of autism which is not very pretty.

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  7. Not sure why this just showed up on my page today, but I want to say thank you for your honesty. I have two sons. My oldest has Asperger's and my youngest is severly Autistic, non-verbal, and not potty trained either. He is 10. He bangs his head. Goes from lethargic to so hyper he throws himself into an asthmatic attack and the cycle starts all over again. He also has seizures. I have a hard time with the "spin" put on Autism as well. There is no yellow-brick road, magic pill, or diet that is a magic cure. Support and just others taking the time to try to understand can go a long way!

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  8. You know what I hate- those wellness centers who pray on parents like us- I'm sorry -and I don't mean to offend anyone but I've spent so much money throughout my sons13 years - one was a "DAN" doctor who had some stupid devise that was supposed to tell us what my son was allergic to( I should have ran out of there as soon as I saw the technician- she was a young girl who looked sickly and had thin scragly greasy hair) and all you had to do was put your hand on some computer mouse and a list of his allergies would appear on the screen- see what I mean- so stupid- needless to say - it said he was allergic canola oil- so we went home- took him off canola oil and prayed to every god that would listen- but - nothing! I can write a book on all the stupid cures we bought into over the years! How about you autism daddy? What was the craziest " cure" you ever tried for your son?

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    1. lol I have actually heard some positive things about Zyto.... won a free scan, waiting for my unit. :)

      Nothing is a magic wand, everything is a process. :)

      This is where we are: http://www.youtube.com/watch?v=KLjgBLwH3Wc well getting there ;)

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  9. always love your posts but this really struck home, here in the UK kids on the spectrum are routinely miss understood and pushed out of society, as a single parent i struggled for 5 years to get my 9 year old diagnosed - he was 8 months ago, his school will not take him as he is aggressive and his childminder gave up a few months ago as he has started running away-I have now given up work and he is with me 24/7 as nobody else appreciates his problems as he communicates so fluently, he will however never have a formal education and possibly therefore never work, I won't live for ever so what then for a child who can only function calmly with one person???

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  10. Sooooo True you sound just like me.....Our son is severe and you never see anything on that level it gives everyone the wrong idea!

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  11. I enjoyed reading your post. I also have a son (age 12) who happens to be very challenged! See you on Facebook! :)

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  12. My kids are higher functioning but even our story is not all warm and fuzzy. They are teens with massive meltdowns. Depression and threats of suicide are a part of our daily round. Trying to get the mix of medications right is a nightmare. It's not fun at all.

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    1. Same here Karen. Mine are younger but we are probably 4 aspies (me and dad and the two, ages 5 and 7) trying to learn how to deal with ourselves and each other. Not pretty.

      I completely understand AD here. My kid would love horse therapy and a dog and dolphin therapy but it's not going to make her better at communicating LOL (She IS verbal but there is a difference between speaking and communicating :) )

      Even with my HF kids, we are homeschooling.

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  13. Thank you AD. My thoughts exactly. Maybe if people knew more about the severe end of the spectrum they would stop calling the police when we go out in public. I have to go the grocery store too. If she screams or punches herself in the face, it doesn't mean that I am abusing her. This has caused me to live very isolated from society. My daughter is 18 and facing 'aging out' scares me. I will be completely on my own then. Keep telling it like it is AD. Thanks again

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  14. I feel sometimes the autistic community is like the frog in the pan,the water is getting hotter and we are busy,overwhelmed and our kids are affected and NO ONE IS REALIZING THE NUMBERS ARE STAGGERING Why just the feel good stories,why aren't the MEDIA,CDC, THE GOVERMENT DEMANDING ANSWERS,What is happening to our kids,or do they know ? I don't know what to believe anymore

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  15. thank you because it isnt always great even if the child can talk and do things, sometimes the social aspect is just to much and they just dont get it. i see those feel good stories and hope one day maybe but then i also think maybe not maybe always living with mom and dad because he just doesnt always get it 100% of the time. things have changed so much for him in the last 1 1/2 now has some new dx to go with what he had and its not easy and i dont know if he will ever get it 100% but i will continue to hope that he can. mom of a 13 yo

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  16. So true! I know we all need to be uplifted, but seems to me some people are "glorifying" it and that paints a picture that is untrue for many of us! Please do not tell me how our children are the "new" human design and they will "save" the world when I am just trying to get my beloved son to pull his pants up at nearly 6 years old....I am an extremely optimistic and hopeful mom, but I choose not to be in complete denial about my baby boy's life. As I am writing this I have to tell him to take matchbox cars out of his mouth and stop licking the picture window several times!!!!! We are truly thankful for all the progress he continues to make but try to be a "bit" clear headed about it, and some of these stories (most) are really high functioning kids and they do not show a true representation of what many others lives are about.

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  17. Great article. I enjoyed the article about Justin in the NYT, and I hope that someday our son, who has Aspergers, will have a reasonably successful transition to adulthood and as much independence as possible for him. Yes, Justin's life is a best-case scenario for people with AS. Still, I was encouraged to see someone DOING IT.

    But I'm not oblivious to the adults with severe autism in our country. I spent a number of years working with profoundly disabled adults in a group home setting. Two of them had specific diagnoses of severe autism. I loved working with them, but it was anything but easy. And these men had grown up institutionalized, 20-40 years in state "hospitals" that bore a closer resemblance to a Romanian orphanage than a medical/long term care establishment. They bore the physical scars of their own self-injurious behavior, and scars inflicted by others (other patients or staff, we'll never know). It was absolutely heartbreaking. These adults with severe autism ARE in our society, but they are almost always a hidden population. At best they receive kind, compassionate, professional care at home or in group homes or state "hospitals." I don't like to think of the worst-case situations, but I know that it happens as well. Severe autism is tragic, as much as you may love or care for the affected person. The media likes "feel good" stories, but the truth is the incidence of autism all across the spectrum SHOULD scare people. Only a small percentage of people with an autism spectrum disorder will have the "happily ever after" ending reporters prefer to show. Good for Justin - but he's not representative of autism in general.

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  18. It's a good post but also just reminds me how much the "Autism Community" is divided. Just like parents of kids with Severe Autism get so tired of hearing all the warm and fuzzy Asperger's and HFA stories, I get tired of hearing that my Aspie doesn't have the 'real' Autism and having our day to day struggles and lives down played by the fact that my son doesn't stem 'as much' and talks. We ALL live with Autism and we all have our struggles. Yes, my son is functional and he will most likely not end up in a group home etc.etc.etc. He still stems, he's socially akward, he's VERY unfocused, has trouble finding interest and motivation in school people don't understand why he roams around touching stuff teachers have called him weird at school and while none of this may seem like a "problem" to parents with un pottytrained 10 year olds, it's an everyday struggle for us. Because my son won't be in a group home he HAS to figure out how to make it 'weird' or not. I do my very best to advocate and I feel it is our job as parents of high functioning children, and I've also had conversations with my son that it is OUR jobs to advocate and raise awareness for the severely autistic, who has adults can't advocate for themselves.

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    1. I'm sorry but maybe, just ONE day, you should be thankful for some of the things that your child CAN do. I have never even had a conversation with my 6 or 8 year old! My six year old, has ZERO words! He is the best but his autism is a bigger struggle than the autism you are living with. Sorry! That's just the truth.

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    2. What all people need to realize is that nowhere on the spectrum is there just "warm and fuzzy" miracle stories. There are very real challenges on all parts of the spectrum.

      And it is wrong to force anyone on the spectrum (weird or not) to conform to the outside world just because they have to. We (everyone) should understand and prepare for those differences and how they will function into adulthood.

      I have 3 children on different levels of ASD. My Aspie knows she would not like a job in retail or that type of job so she is planning her future around where she knows she functions best. We also know that it is unlikely that my youngest will ever function without a caregiver assistant. So we plan around that. We give him as much as his skills can handle and a little more. The rest of the world needs to learn to deal with him not him with them. We need to meet in the middle.

      I know the blessings and hardships of all my children and I do not think my struggles are harder or easier than anyone elses... they are just ours and because they are ours we have to deal with them... other people don't. Know one knows the struggles that go on behind closed doors and we shouldn't pretend to but we should try to understand.

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    3. but that is the same with neuro typical children. Believe me, I know where you are coming from, People should not judge others. I see plenty of melt-downs in the stores with "normal" children. I feel less for those parents (who should leave the store and show those kids the proper way to act in public) than those with children on the spectrum. People fear the unknown and are so caught up in their own lives, they just can't fathom what is going on in yours.

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    4. Oh please. Really? Don't play the "oh but normal children do that too" card. It makes me want to stab myself in the eye with a fork.

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  19. I completely agree. There are a lot of "feel good" stories that get posted. But no one talks about the hard stuff. No one talks about the ugly stuff.

    I have a child with aspergers and even we have ugly stuff and hard stuff. There are things that we deal with daily that people just do not understand.

    In fact, I think you have inspired me to write a post on my own blog about the ugly stuff and the hard stuff. Thank you for sharing your perspective.

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  20. Thank u Daddy. I'm sooo tired of hearing have you tried this and what about that, read this book. I'm sorry I appreciate friends and families concerns but there isnt enough hours in the day and to be honest if these things aren't something that peaks my sons interest then he won't stand for it for more then a few minutes and it's ends in rage and tantrums for him and guilty and frustration on my part. Don't get me wrong I'm constantly looking for ways to teach my son that peaks his interest, not therapies per-say but phone apps and books or different toys I can use to teach but one thing I've learned is it has to be something he's interested in, that he wants to do, when he wants to do it if not then he's just going to shut down and not get anything out of it anyway. He does receive Speech,food and occupational therapy but he has a strong bond with each therapist and the only one he still has tantrums over is his food therapy but it's 50/50 whether he has a good session so unless He begins to flat out refuse
    the therapy then we will still keep going. The point I'm making is I know people mean well but what is a miracle cure for one child could be out right torture for another child

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  21. I work as an Early Interventionist and sometimes the one to get the parents to the psychologist to finally get the diagnosis I have suspected their toddler has, Autism. You are realistic and I will refer parents, especially Dads to this blog. You are a support that some need in this age of connecting through computers. Thanks for your honesty!

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  22. Yep, A.Dad...correct. My kids are higher functioning, and are as goofy as can be! One has high anxiety, and is aware that he is quite odd, and is furious about it. One is delusional most of the time, and couldn't care less if she is appropriate. Sure, they are sort of participating in life, but they require care that no 24 year olds "should" require. I have no "recovery" illusions, and worry that the rest of their lives will be freaking hard. Maybe, tho the maintainence work is greater, it is easier to be less aware?? Man, I don't really know, and I hate to burst the hopeful bubbles, but autism in any form or degree is just plain difficult!

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  23. Guilty as charged. I Facebooked you an article about pot for spectrum kids, lol. But that's not a cure, more a management tool that I thought sounded like it might be of interest based on what I've read about your son. ITA that the steep surge in rates of the disorder seem to be marginalized and/or misunderstood in the mainstream media. Scary.

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  24. I hear you. I see both sides of the spectrum daily. I am diagnosed aspergers (have been since I was a child) and my 2 year old has severe asd. While aspergers isn't all peaches and cream it also isnt the non verbal, poop smearing, screaming, head banging, hyperactivity etc that I deal with everyday with my son.

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  25. I know this is going to strike a nerve with many but to answer one point in the blog, I am a professional in the field of Developmental Disabilities, and have seen MANY older autistic adult individuals in state facilities WITH MY OWN EYES. A journalist does not have to tell me that they exist, I have seen them whether they carry an autism diagnosis or not. The older adults I have seen rocking, looking at a piece of thread, or a spinning toy...they exist even though most never go into the community. Just because the general public does not see them does not mean they do not exist. I have serious doubts about the truth in the epidemic issue. The diagnosis of Asperger's disorder (lumped into the 1 in 100)did not even exist before 1994. The addition of this diagnosis and PDD-NOS coincides directly with the upturn in ASD diagnoses. Prior to the Asperger's diagnosis, most kids diagnosed with it would have just been considered quirky or socially awkward. I also know several adults who have recently been diagnosed with Asperger's as middle aged adults who always knew they were different. This fact as well causes me to doubt that there is some new "epidemic" of new cases. Our autistic kids are simply far more visible nowadays(due to de-institutionalization) and the diagnostic criteria have expanded so that more kids fit the criteria. If you would like to do your own research, look at the differences in the DSM IV-R, DSM IV, DSM III, DSM II, and the first DSM. The diagnosis of Autism did not even appear until DSM III in 1980, doesn't mean it did not exist, just not as an official diagnosis. Prior to that, it was childhood schizophrenia. I personally feel that the referral of the autism "epidemic" is a means to receive more funding and support for the autism community, which we need. Here is a link to the history of Autism in the DSM -- http://suite101.com/article/history_of_autism_in_the_dsm-a40664

    Now, I am also a parent of a child with autism, who also has Duchenne Muscular Dystrophy. My son has classic autism, but on the mild end, however he has a muscle wasting disease that he does not truly understand, is on steroids which exacerbate behavior, and his physical decline causes many behavioral issues. I look at the positive stories posted and think that MAYBE my son could live up to some great things as an autistic adult, but his disease means that he will most likely not live to be an adult. The sad thing is that sometimes I am grateful for his physical disabilities because it means that he does not have the ability to throw violent hitting, kicking and biting tantrums anymore, but usually just runs his wheelchair into things and screams. I am stating all of this because it's hard to be a parent of a kid with autism and Duchenne MD. I wish that I only had to worry about his autism, and feel very alone in this battle. I know many people with kids with one diagnosis, or the other, but it's really hard to support my son through all of the medical procedures which are terrifying and traumatic for him, and for me. The looks I get from the medical professionals that do not understand why he screams from something as minor as a blood draw. The happy stories depress the crap out of me, seems like no one gets that special needs are not always a gift to the family. In fact, in our situation, it flat out sucks sometimes. How do you answer an autistic kid when he asks when he will walk again or what he can do to get his muscles back, when I can't lie to him but the truth just makes him scream and tantrum?

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    1. Thank you. Thank you for being such a brave woman/man in the face of an awful situation and sharing this story. You are not alone. Sadly, I admit to wishing my child gets a cold or flu just so she will be quiet for a day and there will be less screaming. Autism combined with other disabilities can be a living hell and now with deinstitutionalization I can't imagine what will become of her. Thank you for your professional input and the enlightenment that comes with it. Its so important that the public be informed NOW, when their children are young so they can plan early, or even before they have children so they know what to look for. I feel like I've been saying this for years, to deaf ears.

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    2. I was going to post something along the same lines - autism has always been around, it was just labelled differently. My sister-in-law is a professor and she says half her colleagues are diagnosed Aspergers and the other half should be. There is a reason for the absent minded professor stereotype - these are really high functioning Asperger/autistic adults, hyper focused on a particular topic until they become an expert and know everything about it but can barely function socially or deal with day to day life. My dream is for my son to become this way! It would be awesome. I fear he may never be self sufficient - one day I will die and then what? Who will care for him the way I do? I shudder to think that 50 years ago, people might have tried to get me to institutionalize him. I am lucky - he is so happy and affectionate and sweet. He makes me laugh every day. I have been putting off blood work for him (unnecessary in my opinion - just to see if he has lead poisoning instead of autism which is standard where we live if you get an autism diagnosis - we live in a new house, he has new toys, he barely eats but I know what is in it - where would he get lead poisoning from?) because I know it will terrify him and be traumatic for both of us. I still have nightmares about the blood work we had to do for my daughter when she was 6 month old and it took them an hour to find a vein. It was torture and I felt like I participated in it and couldn't explain why to her. I can't imagine how difficult it would be to have chronic, debilitating medical issues to deal with as well as autism and all the procedures he must have to endure and not understand. You must be exhausted and in so much emotional pain. No one deserves to have those things and as a mom, it is sometimes harder to watch your child suffer than to suffer yourself. I don't know what to say to make it any better for you but I am sending a hug and good vibes. Hang in there. Your son loves you more than anything. Wishing you the best.

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  26. To elaborate, I am not saying that kids are being diagnosed better, but that the diagnosis of Aspergers and PDD DID NOT EXIST before 1994, and the DIAGNOSIS OF AUTISM DID NOT EXIST before 1980. Can't diagnose someone with a diagnosis that does not exist. Just like Tuberculosis used to be called Consumption, and I'm quite sure that cancer existed before people knew what it was too.

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    1. Actually, my sister was diagnosed in the 1960's. Her first diagnosis was childhood Schizophrenia, then my parents took her to see Dr. Bruno Bettleheim. He made the official diagnosis of autism, then proceeded to blame my mother for being disconnectd from her children,my sister was their 5th child and first daughter). She was institutionalized at the age of 9 after our 9th sibling was born.
      She died at the age of 22 which was devastating to my parents and siblings because we felt we lost her twice. I'm a teacher, and kids are being diagnosed better. There is no doubt about that. I do admire you Karin. Never feel guilty about how you feel on a certain day. We all have those feelings that are not socially correct, You are just brave enough to voice them.

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  27. My daughter is also severely autistic Nonverbal and not potty trained I get really tired of hearing about the higher functioning I get so sick of hearing the feel good stories myself and just once I'd like to see a severely autistic child profiled.

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  28. I agree with you but I will NEVER give up on finding something for my son that will bring him out. I agree nothing at this point in the magic bullet but I also believe I have just not found the important thing for him yet. IMO if I do something and it causes him to regress I will not stop... I just keep plugging away at making his life better...
    I've heard the animal therapy isn't something that works and keeps working. I'm told it tops out and when it does and you stop using it the benefits go away. Music therapy is supposed to be LEARNING to PLAY something not listen or play around music. It's for the right brain, left brain communication for Autistic children.

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  29. I disagree with Karin about the diagnosis of autism. When I was in nursing school in the mid 60's, we learned about autism. Every thing we learned was wrong, but the term was being used then. I believe it has been in use since 1943.

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    1. Yep...I agree with you as well. I think Leo Kanner used it in the 40s.

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  30. My son has Aspergers cannot cope with social or emotional stuff. I am on my own with him 24/7 as he can't cope with school. Can't even cope for me to teach him. Each day he wants to kill himself. In the UK he gets a pediatrician twice a year and we are still waiting for psychological help. He gets no therapy, nothing they have left him to live 24/7 in his bedroom. He's now 14.

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  31. The other piece to this is this potential "promise" of recovery and the stories related to that... The diet, the supplements, the therapies - but underlying all of this is this potential for the child to be cured of autism... That would be a very interesting statistics to figure out: How many families of children with autism are bankrupt or close to it because of their child's therapies... Most of which may not make any difference at all... I think it's a bit of a comfort blanket for the parents to think that they are doing "something" for their child...

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  32. I don't think the general public is really ready to see the "real" side of autism. No one thinks it could happen to them. Autism scares the hell out of everyone, cause it's like carbon monoxide, and unseen monster, that robs our children of life as it's suppose to me.

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  33. Its a tough gig.I hear you.

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  34. I work with severely autistic kids, so I like seeing success stories. That said...as a speech therapist I am highly suspicious of claims that someone suddenly started talking after, say, 5 years old. Really? Like, the autistic person was non-verbal and then just started talking. I have never seen that happen. I hear adults tell me they, themselves, didn't talk till 3. "My mom says one day I just started talking in complete sentences." Keep believing that fairy tale if you want, but I'm sure the kid was talking before...maybe not clearly, but still...~~Zennifer

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  36. I work with severely autistic kids, have one son with "classic" autism and a daughter diagnosed PDD-NOS. I'm also an advocate, blogger and author. Autism in our house sucks. It's loud, chaotic, saddening, frustrating and disappointing; but at the same time, the little strides are encouraging and the love is amazing. Sometimes our son makes us want to lock ourselves in our room, and our daughter's lack of focus can be nerve wracking. Yet, when I post stories, I try to find the encouraging ones. Yearly I work on a month-long April celebration called "Celebrate the Spectrum."

    I fear from your post that what I am doing is selling out my kids (and yours, and others like them). I've always felt I was doing the right thing. Maybe it's time to rethink my strategy...

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  37. I used to believe that autism was some new fangled, flavor of the month diagnosis when calling your over active kid ADHD was not so fashionable. I called BS on most of the kids I met whose parents claimed they were AS. But now, I have a 4 1/2 year old severely autistic girl. She was never normal and I can't remember any normal period in her life.

    It sucks when your child scores so low that people tell you to make plans for her care after you're gone. Or to have places in mind if she gets to the point that we can no longer handle her.

    How many HF parents have that hanging over their heads? My child is only 4 1/2, how can they know that for sure? Almost all the treatments or studies are done with HF kids so they can show success. These successes get paraded around as feel-good stories and it makes me sick, sick, sick.

    There's no magic pill for our kids and our alternative is a system that hopes to give them a sixth grade education so that they could live at a group home. She only got worse under 'therapy' not better.

    I've pulled her out and she's doing better not progressively getting worse. I hate where I'm at right now in life. But, my daughter has nothing to lose and at least she'll be happier.

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  38. I agree....
    Dont get me wrong, I like the feel good stories... but those are not my kids... and sometimes it gets depressing hearing them... well that's great, but my kids can't/don't do that.
    I have two boys 4 and 5 both nonverbal autistic... Your son reminds me of Tyler... He eats about 5 different things. We have to give him pediasure to supplement because he will just not eat. He's four and just starting to say numbers... Justin is 5, and although his eating habits are better than Tylers... he eats about 10 things, he doesn't talk AT ALL... Tyler babbles... Justin grunts and growels. They both aren't potty trained. I JUST got them off of bottles this year and using sippy cups. I have hope that Tyler may SOMEDAY be able to live maybe in a group home or something... with other kids like him... maybe get a job with computers or something because he's amazing with an ipad...
    But Justin.... I don't know if I will ever hear him talk. I don't know if he will ever be out of diapers or ever live on his own.
    And we have tried SO MANY THINGS to help them grow and learn.... and it's really aggrivating to hear "Oh well you know, you just need that one thing that will -unlock- their autism." People thing because they read one book or hear a feel good story they know how to take care of my kids or what they really need. Everything I do is for my kids... I am CONSTANTLY researching teaching techniques or things I can do to help me kids. To those people I try to hide my distaste for them as well as possible, smile and say maybe.

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  39. This is your blog and you should be able to say what you like and how you feel. From another perspective...I find the "higher functioning," autistic kids or kids with AS tend to be looked at it as if they aren't autistic enough. That is from my experience...they are just spoilt and need to grow up..there isn't anything wrong with those kids. They just have no manners and need to get with the program.

    It's a no win situation for parents and I don't judge any of us...my life isn't necessarily better or worse than anyone's...it's just my life. I have huge empathy for any parent who has children/child who has autism of any form as it makes things challenging daily. Hugs to all of you!

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  40. Bless your heart, I think that unless a person lives with it, they cannot understand how we live. Even such a large range within the spectrum. My son is twelve and high functioning, but we have many difficulties as well. While I feel like the autism is part of my son's charm, it's only really endearing to the adults who know and love him. As he gets older his differences are more apparent and I pray the children will be kind to him. We struggle with the messes that give me lots of anxiety, his own anxiety about the world around him, his grades (even though he is very bright) and here comes puberty.
    That being said I work in a room for children with autism and we have had some severe children and my heart goes out to them. My point I guess in all of this is while we can be very grateful for what we have, it is often difficult to take our eyes off of the challenges we face because we live them, we ache for our children, all of them. We want them to do well, and people to be kind and loving and understanding. It is nice to have a community for all the parents of these precious children. Because let's face it, autism is isolating for all involved. So if we as parents can rally around each other and offer that support and love and acceptance, it just makes that load a little lighter.

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  41. Interesting. Sometimes the "feel good" stories make you feel "not so good" huh. My perspective: You don't need a major miracle to "feel good". Accept the Autism as it is, and then feel good about the many smaller moments. Autism Daddy you are pretty good at making us feel good with your stories of King Kyle!!! :-)

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  42. "High Functioning" I am "lucky" my son isn't as severe as most but then again my son is more severe then some. As I told someone who said to me " So he's high functioning?" I replied " yes, but not today" as that was a day he was screaming at every noise, crying over every little thing, and screaming because he hates taking the bus which he hasn't had to take the bus in 4 months. So yes my son is "HFASD". 2 days out of the week you can tell he is HF then the other 5 days you will catch him and I both crying because he is getting stared at because the fire engine that went by seems to have an echo. While at the grocery store the cell phone in the distance seems to keep ringing in our aisle or the crying baby two sections over has a twin sitting in my cart or someone was mean to him, math is too hard, he can't print or run, or heck he thinks he is different! So yes my son is HF but in the near future there is no Michael Jordan, Jackie Robinson, or Motzart he is a 8 year old little boy struggling to be liked and understood.

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    1. I have 2 little ones with autism "PDD NOS"? I don't know if that's really high functioning. They can speak, but don't always get the meaning when people ask questions. They do ok with yes or no questions or which do you want? They are very happy and usually sweet. But they do scream, shout make weird noises...etc. I am glad that they can ask for things they want, but also sad that they cannot hold conversations as other kids do...therefore they really don't have friends outside of their special needs classrooms. People don't have much patience for them either... I have the experience of having my older girl "rejected" from religious ed. class (probably she was very anxious and better off anyway)...then I have also had other parents of more severe kids ask me why my kid is in speech , and tell me that "That is not autism". as compared to her son. It does seem to be a no win situation... they would know if they saw her struggling every day like we do. I do the best that I can... Just like everyone else. I try also to keep my mouth shut!

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  43. Hmm, so I sat and thought about what you said before I responded here. As a parent of a 16 year old girl with severe autism and learning difficulties, I totally get what your saying. I have an autism charity that grants wishes for children and adults with the condition and focus quite a bit on the positives. It's a fine line though isn't it. Personally, I think there is so much negativity and crap out there about Autism that I don't always wish to add my crappy days to it. That doesn't mean to say that I am in denial or oblivious. I'd love to have the balls to write a blog as eloquently as you do, and a real, down to earth one that has no holds barred. I love your honesty and I love the fact that you talk about the tough side to living with Autism. For me, it's extremes in the UK. We are either reading about the sort of stuff you quote above, or on the other end, the parent that killed themselves and their child because they couldn't cope anymore. There doesn't appear to be a medium between the two.

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  44. i love that you let people know that autism isn't all feel good. I work with kids with autism. and let me tell you, i go home exhausted everyday! Once a week, I have a new bruise or scratch on me. I do love seeing the progress in my kiddos but there are days that all that they have learned has disappeared. each day is different for the kids, some good, some bad but they keep me on my toes thats for sure!
    AF

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  45. I think that mainstream media puts one of two spins on Autism...you either have the fell good "quirky kid" Autism stories, or you have the "kids with Autism become mass murders" We can thank the whole Sandy Hook/Adam Lanza thing for that. They never seem to do the stories about the kids/young adults/adults with autism, that SOMETIMES have great days, but spend the majority of their lives just trying to make it through the day.








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  46. I agree with you about the feel good stories taking away from the severity of this syndrome. My son is 17, non-verbal, not toilet trained, etc. and that is the side people don't always want to see. Can he use a communication feature on his iPad to tell us things... yes, he "can"... does he? Almost never. Everyone is so impressed he can maneuver around YouTube to watch videos, well it isn't so wonderful that he will sit there for 8 hours or more if allowed without food, drink, toilet etc. My brother in law, who was of similar ability passed away recently (respiratory issues) at age 46, after a long life in adult care residence. We saw a lot of bad things through these years. No one but the families really see what is going on. It is not the child's world full of therapies and hope. It's a lot of sitting around a group home with no one even caring to interact. This all has to be brought to the light. Heart wrenching for us parents.

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  47. Cheryl Porco-MoyerApril 1, 2014 at 2:20 PM

    Good word.Thank You. I have a high functioning 17yo and a non-verbal 8 yo. I am guilty of sending you stuff that may have offended you. I apologize. What a pain in the ass to get "well meaning" advice, like I really know what is like with Kyle. I don't. I never will. What I do know? Andy is struggling with all things digestion and elimination. I know I do not have to explain further. :) As well as sleep.
    I found a couple things that have proven quite successful for Andy. If I may be so kind, it is essential oils.
    Not A SALES talk!! The doterra Digest Zen around Andy's belly button(pinky swipe dose of kids), one dose,:HOLY CRAP and I mean that literally!! As his body starting cleaning out what ever hell was in his gut, his behavior modified. By no means did he miraculously start talking, yet there were subtle changes in his overall countenance. So I started applying frankinsence on the bottom of his feet and a pinky swipe down the sides of his spine....he calmed and has starting chattering from time to time in lieu of making what we call "happy sounds". There is no cure I am looking for, what I did find was something that seemed to help the "clamor" in his system to quiet a bit. If I had the funds I would simply send you a bottle of frankincense, lavender, grounding blend and of course Digestzen. Thank you for tolerating my soap box of essential oils. I also sent you a video about seizures from doterra. I hope I did not offend or tick off. Intentions are good :) not for profit. We also follow a GF diet, that is another story for another time.

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  48. Christophersmom you took the words right out of my mouth! I, too, feel lucky that my son can talk to me and hug me and tells me he loves me. I don't take that for granted - EVER. But yes, we have our days. Our days when the school says he was sitting outside under a tree melting down because of a fire drill. And days when he's just not able to verbalize what or how he's feeling. Or days when he can't get into the pool for swim lessons because they decided to use the bigger pool and he can't take the change in routine - and everyone stares at us like we have a disease. Each parent that has a kid with autism is living their own reality. Whether it's "high functioning" or not. And some therapies or feel good stories might give you hope that one of them may help reach your child someway, somehow. Or they may not. My heart goes out to all of us! Thank God we have each other to lean on. Let's hope that never changes.

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  49. I don't have a question. I live with what you describe every single day. My son is 13 now, still non verbal and it took us 8&1/2 years to potty train him. He still has accidents almost nightly. He will likely never speak. He will need help for the rest of his life (from me) I myself have high functioning asbergers. We live in WY where life is hard and have no services for handicapped, just years and years of endless waiting lists...

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  50. I hear you AD. People are working so hard on selling inclusion that they are leaving out the tougher side of the spectrum. Society needs to understand that they can't just choose to let in the entertaining savant and leave out the awesomeness that is the King! Taken me an age to post. Like your honesty. Keep at it. Doing a mean ass job x

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  51. I have my own, low functioning, non verbal 23 year old son, oh with epilepsy as well. For my whole son's life, since diagnosis at 22 months, I have had people cutting me out articles, sending me well meant stories, books etc. etc. It really get's to you, it's like do you people have a F ing clue, my child (adult) will not do all the trick's, he has none of the bells and whistles, he is just what he is, not going to automatically "poof" into a "normal" person with this or that well intentioned therapy, diet, medication. It makes my blood boil. They need to classify our kid's and there's as apples and oranges that they are. No offense to them, but they have not got a clue... ok. that is my 2 cents.

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  52. I don't agree that there's an epidemic. Yes, there is more awareness et al., but they also lumped everyone together. I don't see how spending money to prove an epidemic is helping families. I think we should spend that money and put it back into the autism community for those who truly need it (and not for horse or dolphin therapy - for respite programs, elopement/wandering training for emergency personal, and whatever else is needed. As an HFA'er, I don't appreciate Autism Speaks' negative message. I have panic attacks when it comes to the idea of interviews. I don't need potential employers thinking negative thoughts about me. It's just another obstacle I have to climb, especially when I have a medical rap sheet as it is. Shit, anyone who thinks autism is all unicorns and heart farts isn't exactly living in reality, either. It's not my life. I do head bang, but it's the worst autism, either. There has to be a balance somewhere so that idiotic politicians get the message without sending the message that all autistics deserve pity. No one ever asked me if I wanted to be a rocket scientist any way. Ok, now all of you parents can throw rotten eggs at this HFA'er who doesn't have kids. Just try to throw a few good ones so I'll remember to eat (slight sarcasm).

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  53. thank you for keeping it real I am a mother with a 13 moderate/sever autism non-verbal seizures that are not controlled anymore he has what is called screaming seizures he is a wake and beating his head during the whole thing and it could last for 30min or less and I have another child with autism and she is very verbal and life is not easy I am a single parent with some help but over all it is just me I wish that there was more story like yours that make us fell so alone that I can relate to have someone that speaks your language is amazing empowering and more help that you know thanks you and your family

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  54. Dear Autism Daddy, I read this particular post yesterday, and its been on my mind ever since. In light of it being Autism Awareness Day, and I have 2 adult children with ASD, I wanted to give you my thoughts on the matter. At the risk of being way too blunt, even for you, the reason we see very few adults in their 60's, 70's and so on in Group Homes or living at home is because they are Dead. I've been to a number of group homes and my eldest is in one now. Its all about the rights of the individual. If your individual doesn't want something, its ok, he doesn't have to have it, and if he or she does, then he or she gets it. Good or bad for them doesn't matter. When your non-verbal child becomes a non-verbal adult, and you are not around to interpret every sign or gesture, no one will know that his tooth hurts, or stomach hurts, or there is a pain in his/her side, hip, groin, ovary, head.... No one will know and, thus, it won't get treated. It certainly won't get treated in time. I venture the proposition that people with ASD's have a much earlier average life span. They die from untreated medical conditions most people wouldn't. They die from running away. Not looking when they cross the street, taking the wrong medication, seizures, and other medical conditions related to their ASD. So, to you and that wonderfully honest NYTimes Reporter, thank you once again for your true stories because you won't see or hear what I just said very often. People don't want to hear that, parents want to believe their child will grow out of it. I did. It takes a long time to accept the diagnoses, let alone what the future of that diagnosis will bring. That level of acceptance requires too much time, too much money and too much government assistance. Its so much easier to focus on the positive, isn't it?

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  55. My son is three and being diagnosed, but there's no question he is high functioning. Even so, that tiny window into your world makes me want to send you all the hugs in the world. I am glad you are keeping it real; people need to know, and it is healing to hear your bracing point of view even when it is a little salty.

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  56. I absolutely agree as if "high functioning children living with autism is the real deal". I am blessed that both my boys are "high functioning", but I can do without the meltdowns and from time to time urinating on themselves at almost 5 years old. oh yeah and when they strip it's even more fun. Stories like your are more real to me as it shows how real the "spectrum" really is and not to mention when you add more diagnosis to the mix. I have cousin who has ASD and has epilepsy, she is 7 years old in diapers and is has the physical characteristics of a 10-11 year old due to the medication. I think it's time Autism Speaks the real truth on how real the "spectrum" is because people need to know that there are parents and children like your exist. I salute you and I pray that the LORD continues to keep you motivated in trying to defeat autism.

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  57. I wouldn't worry too much about the feel good stories. All it takes is one story of a young man killing a bunch of people, associating the word 'autistic' with the young man...and the story completely wipes out any of the positive press.

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  58. Thanks Autism Daddy for your honesty and humour in regards to living each and every day with severe autism. My 20 year old daughter is severely autistic non-verbal, challenging behaviours, the works. There is no magic cure for my daughter, wish there was. Whilst the feel good stories are great, it also makes me feel a little sad because I know my daughter will never reach those levels. Don't mean to sound negative, but that just the way it is.

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  59. I have worked with special needs children as a Teaching Assistant for the past 12 years. I have seen the children who are non-verbal and self-injurious. Last year, we had a 7 year old boy who was not potty trained nor did he eat anything other than cheese curls. He still drank out of a bottle. His parents were always looking for someone to make their life easier. They were very demanding that we at school should potty train, introduce new foods to their son, and 'teach' him to talk. They had grown children who were not autistic so I believe they were overwhelmed and looking for a miracle. In the same class, we had 4 other students with autism but they were higher functioning. Each child is different and there is "no cure" .... all of them had meltdowns. All of them had social issues. All of them were impulsive. I enjoyed the good moments and dreaded the bad moments. I was there for during both. I don't believe that the feel good stories represent anything more than a few people or a few moments.

    I applaud you Autism Dad.... I love your realism. I love that you are unafraid to talk about the daily difficulties. I love that you accept your son for the person he is. I love that you and your wife are a team.

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  60. Thank goodness for a place to spill some guts!
    I believe in most of our day-to-day lives "i'm fine" will just have to do....

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  61. My child is high functioning, and this stories give me hope for her. But, it is good to be reminded that it is a Spectrum disorder, and much research still has to be done. I see some of the tough side, with melt-downs, missed social cues, sensory processing, but she has the advantage of being able to communicate what's wrong, when she is not too overwhelmed to remember how to. Thank you for posting this. All of us have a different road and we're trying to do our best for our kiddos. But there is still so much the world has yet to understand, and only looking at one end of the spectrum doesn't do it.

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  62. I blogged about the same thing recently. Those stories do not paint an accurate picture for the majority. http://quirks-and-chaos.blogspot.com/2014/08/those-news-media-feel-good-stories.html

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  63. Thanks for sharing! I have a kiddo who is almost 9- non verbal, in diapers and self-injurous as well. (On the top of the wait list to get a support dog too!!!) So I hear you! One thought I have though is about the severe autistic adults in group homes- I could be wrong, but I don't really think SEVERE autism is on the rise. I'm quite involved in autism support groups, and have really only known of one other family with a severe kid. This is out of hundreds of families with kids on the spectrum. So that is one thought for sure. Also- these adults were likely diagnosed with other disabilities like severe retardation as well. Just my thoughts on that!

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  64. mabe u shold weake up an see the tru beauty that autism can an is insdted of this trajedy stuff an that autism is needed in this werld tu counter afeect the boaring NTs tht want tu delete us tht live wth it

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  65. as an adult on the autism spectrum i tri tu promo positives abt autism as autisms nt this awful sentence of misfortue u shold be gratefil ur childs alive an if uii u look insuide ov him he has many gidfts an abiitys awaiting tu be dsvcovered

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