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December 8th, 2009
10:26 AM ET

Autism: A journey of recovery

Editor's Note: New cutting-edge research is helping to unlock the mysteries of the child's brain and could give autistic children a whole different future. Watch part three of our special series, Inside the Child's Mind, tomorrow on American Morning.

By Kiran Chetry, CNN

As a baby, Jake Exkorn was everything his parents hoped for – happy and healthy.

“He hit all of the developmental milestones. He walked, he talked, he played,” says Jake’s mother Karen Exkorn.

But at 17 months, Karen says the light began to fade from Jake's face.

“At first he stopped responding to his name. And then he stopped playing. And then by his second birthday, he stopped speaking entirely.”

Karen worried it may be a hearing problem, or a speech delay.

“I never expected to hear the words, your child has autism. … It was completely devastating. It meant that there was no hope for my son. And yet I was determined to help my son in any way that I could. I knew that I wanted treatment for Jake that had science behind it. And a lot of treatments don't. But the one that had the most science behind it was a treatment called ABA.”

ABA – applied behavior analysis – is an intensive approach that uses repetition and rewards to teach autistic children the things that come naturally to most kids.

“We wanted to teach Jake to respond to his name. So we'd say, ‘Jake,’ and we'd take an M&M and we'd hold it up just between our eyes.”

Day after day, 40 hours a week, they plugged away – hoping to help Jake relearn what autism had taken away.

“Going into this there were no guarantees. Nobody ever mentioned the word recovery to us so that wasn't our goal ever.”

And there continue to be no guarantees, but for the first time a new study shows that early intervention therapy can improve language skills and behavior, and raise IQ – giving hope to parents of children with autism.

“What we know is that if children receive early intensive behavioral intervention, some of the children do lose their diagnosis,” says Geraldine Dawson.

Dawson is the chief scientist for the advocacy group "Autism Speaks." She helped design the study and says symptoms of autism may appear as early as eight months.

“So the most important thing is to be alert for those symptoms and then get into intervention right away.”

After a year of ABA therapy, Jake showed progress. Then, at age four – a turning point. When Karen took him for ice cream, without prompting, Jake told the man what flavor he wanted: “Nilla.”

“The man had no idea that this was this defining moment in my life, but this was huge. This was huge. And this marked the beginning of spontaneous language for Jake.”

What soon followed was an even bigger milestone. At Jake's 4 year check-up, Karen was told her son no longer had symptoms of autism. The doctor said Jake had recovered.

“Hearing her say that blew me away in the same way as when I heard her say the diagnosis.”

Today Jake is a thriving 13-year-old. He plays basketball and football, and is every bit the typical teenage boy.

“I like to hang out with my friends. … I don't love to study even though sometimes I have to. … I would describe myself as outgoing, athletic and nice,” says Jake.

A dramatic transformation for a family who once thought they lost their little boy to autism.

“I don't think about it too much but when I do it is kinda crazy. But, my mom and dad put in a lot of effort into it and so did I and it paid off.”

A payoff that, with more research, may be within reach for more children with autism. Researchers still don't know why some children recover so fully like Jake, and others don't. But most agree that early intervention is the best hope for a more positive outcome.

Watch: Inside the Child's Mind: Understanding austim Video


Filed under: Health • Inside the Child's Mind
soundoff (246 Responses)
  1. Mary

    I have two kids with autism. They both were diagnosed with severe autism at age 2. One is moderate now at age 10 and the other is higher at age 9. We did not spend any money on treatments that are suppose to cure your child. We only utilized and still use the school district as our main source of therapy.

    I really do not think there is enough evidence to prove there are treatments that improve or cure autism. Most of them will obviously improve and some may not. Do not give false hope to parents who cannot afford to pay thousands of dollars for therapy. Their children can improve without it. I would imagine this child in the story would have improved w/o ABA.

    January 25, 2010 at 4:45 pm |
  2. Jane

    I would like to add that you do not have to wait for the ABA program to be administered by others. Many parents feel they cannot do this themselves, either because they do not have special training or because they feel their income is needed to support the family.

    I did this as a single parent with no outside support, giving up my fulltime high tech career and doing very part time contract work including tutoring in the library to survive. We lived in a very bare bones type housing but in safe areas I hand selected to be near nature, quiet, and peaceful. It may have wrecked my career, finances, and social life, but it saved my son from a life in institutions, locked inside himself and unable to enjoy the world as he does now. It was well worth it, and I have never regretted it. He is also the most loyal son you could ever have. He knows what I did for him. He recognizes the personality characteristics that slightly indicate something on the autism spectrum, but his teachers and friends can not believe he ever had any austism symptoms. He is just too normal. They simply think he is a good-natured, funny, kind, absentminded professor/encyclopedia type scholar.

    If I can do it without savings, outside help, any support from family, ex-husband, government, public agencies, etc., you can. I never stopped pressing forward, and I had to be very creative about survival. The couples who feel they can't do this are hard for me to understand. I don't judge you as every situation is different, but I wonder how it is that two people can't do what I did as one person and what I have seen other couples do even though they had multiple children and did not have unusually high wages. One person stayed home and did therapy, and one person worked, sometimes two jobs. The other children helped out as they could. They got the job done and were very healthy, wholesome families, not families in strife.

    Please don't be defensive as I've acknowledged that I cannot and do not judge you. I simply would say that I did everything in my power, far beyond what other people said was possible, to do what my child needed, and it worked very well. My life has been much harder, but it's been much more satisfying than it would be if I had not done this and seen the reward.

    Don't wait for outside help. Do it now.

    January 25, 2010 at 3:47 pm |
  3. Jane

    I can understand the anguish of parents whose autistic children have not recovered or at least seen reversal of some symptoms. But, for them to claim that the actual recoveries and reversals of children they have not known is false is nothing more than their way of comforting themselves at the expense of those children who may be helped by intervention so long as their parents and physicians know soon enough that it's possible.

    This is real, people. There is much that is unknown yet, and so there may be factors that interfere with the recovery of some children. It is not unusual for parents to feel they are following a program while in fact they are missing certain key areas and therefore are not seeing the progress they could make. That is not to say that all children may have the same results. Again, there is much we don't know.

    But, all children are worth doing whatever is possible to attempt to help them recover. Saying this is hogwash is like saying that CPR is hogwash just because not all patients treated with CPR recover.

    Don't diminish the potential for other children by dismissing the reality of the children who have recovered or at least experienced significant reversals.

    My son's occupational therapist when he was very young told me that I was the most intuitive parent she'd ever worked with. I'm not bragging. I'm just telling you that she said I was already doing everything she would have recommended and that she felt I could continue on my own with excellent results, coming back to her if I saw any issues. I did so, and my child who was mildly autistic is now on track to go to an Ivy League school, is sociallyo successful, and is a marvelous tutor of middle school through college students, even though he is still in high school.

    Don't tell me he was not autistic. The medical professionals felt that because of my interventions he did not go as far into autism as he would have otherwise. They felt that because my son was in day care part of the time prior to that and could not during those hours in day care every day benefit from the things I did for him at home, he progressed somewhat into autism. When I removed him from all day care, we were able to successfully reverse the autism symtpoms that had begun to take hold since placing him in day care.

    I am not saying that day care causes autism. I am simply saying that kids who are progressing into austism need specific environments and therapies that they cannot get in day care in almost all cases. Keeping my son out of day care permitted me to give him that specifid environment and therapy to reverse his path into autism and help him progress into the well-adjusted, well-liked brilliant honor student he is today.

    I'm sorry for those whose kids have not seen this success. I feel very much for you. Please don't damage the potential of other kids by insisting that such success stories are imaginary. They are as real as my six foot tall son is.

    January 25, 2010 at 3:38 pm |
  4. Ross

    ok, Any 1 who thinks this is a bunch of bull r the most narrow minded people on the planet.

    January 23, 2010 at 10:53 pm |
  5. liz

    I'm so sick of the miracle recovery stories. This one and that nut J. McCarthy. This kid was proabably not even autistic to begin with but rather just delayed. These types are out to make a buck off of their ridiculous books and snake oil.

    December 29, 2009 at 8:47 pm |
  6. warrior mom

    And how in the world can some of you say this boy probably was never autistic in the first place?? Did you SEE the video? Did you see him never once looking into someones eyes? Did you see him unable to interact or imitate? you call that normal? Watch again and then BELIEVE.

    December 11, 2009 at 10:50 pm |
  7. warrior mom

    My girl was severe at 2 and is now high functioning due to hard work on my part and believing that autism is treatable. Jenny is right–children with autism can be healed–just get ready to WORK and SPEND. And don't complain about the money. You think nothing of spending that much on a new car. .

    December 11, 2009 at 10:42 pm |
  8. Amy

    Karen its great to hear that news about your son. I am having the same experience with my son. He met all milestones and then reverted around 18 months. I have done ABA therapy & hippotherapy he started preschool right when he turned three, and now he is almost four and speaking spontaneously & potty trained and I feel strongly that he is on the path to recovery.

    December 11, 2009 at 8:42 pm |
  9. Jane

    Once again, before any parent bitterly claims that they cannot afford ABA and therefore must resign their child to being disabled mentally/behaviorally forever, remember that I, as a single mother with no outside support of any kind (child, spousal, government, family, etc.) provided this for my child personally and far more than forty hours per week but rather every waking moment. I gave up my lucrative career, my social life, my savings and retirement and barely fed us on part time tutoring of public school children in the library while my son sat at my feet or at a nearby table. I did this alone, not because I was wealthy or had lots of money otherwise. I was not and did not. I did this because if I didn't do it, no one would. My son is nearly seventeen now and is brilliant top honor student, well adjusted socially, humorous and charming.

    Do not doom your kids to a lifetime of disability because no one will give you the money to do this for your kids. No one gave me the money. I did it myself for eighty hours per week and supported us humbly as well. I did not depend on an insurance company, school system, government agency, or rich relatives to do it. If I had had a spouse, I could have done it much more easily, but I did it on my own.

    For those people who complain that they make a six figure income and have a spouse and two kids so they can't provide it because no one will pay for it for them, they are basically willing to let their child live that way because they cannot envision giving up all the typical comforts of middle class or upper middle class living for a few years. Is your lifestyle really more important than your child's life? Seriously, folks.

    Now, I am not trying to condemn anyone. I understand that many people cannot conceive living so humbly for anything. They can't see that they would survive if they did so. It's frightening.

    But, that child is dependent on you to make the necessary choices to provide for their needs, even if it means temporarily forgoing your own wants or perceived needs.

    I feel that I can say this because I have made sacrifices far beyond what most people could imagine anyone making for their child. I have lived in poverty to give my child a rich education and a rich future. My child has in turn always maintained that he will care for me well in my old age, and he will be able to because the type of college he is qualified to attend pumps out graduates who start at age 22 at $70K per year. He is planning to do a Ph.D., however, and will make far more than that barring some tragedy. Even if you look at it from a financial point of view, it makes far more sense to give the treatment than to raise a child doomed to require costly care for a lifetime. But, this should not be about finances.

    We as parents are not victims of uncaring insurance companies. Are the uncaring? Probably. Should someone pay for this? Sure, that would be great. But, saying that only wealthy people can do this is a very sad excuse for neglecting the needs of these precious children.

    Parents, you are able to do this yourself, with few exceptions including the psychological or physical inability of both parents.

    If a single mom without any help can provide this for your child with very successful results, why can't married couples do it? Typically, they want both parents to work full time to maximize income and/or they think that a trained professional must be paid to do it rather than having one of the parents become trained either through self study or formal training and do it as a stay at home parent, enlisting the working parent to do extra work at home to allow the parent providing therapy to focus on that.

    I shudder to think how many children have been institutionalized or put in group homes for life because parents said they could not afford for them to be recovered when they were toddlers. I didn't wait for anyone to do this for my child or pay for it. I just did it myself, and it worked.

    Don't wait for successful recovery. Roll up your sleeves, downsize your home dramatically, slash your budget to bare bones, and get to work, parents! Don't tell me it's easier said than done. I've done it.

    December 11, 2009 at 5:37 pm |
  10. Nicole D.

    This is a nice fairy tale, but I don't believe any of it.

    December 11, 2009 at 2:52 pm |
  11. Amanda

    Read Simon Baron Cohen, and his ideas about autism. He doesn't seem to view it so much as a disorder, rather that these kids' brains just work differently. On the spectrum, of course, there are varying degrees of autism. Some so severe that the child can barely function. But their brains are special and active and alive nonetheless! I refuse to see my autistic child as someone who needs to be "cured." It's too depressing to think of it that way, and not productive. He does need to learn skills to teach him to mainstream in society (ABA a great method.) But I would encourage other parents of autistic children to try (I know, it's hard) to not view it as a disorder, but as a quirk. Many great, wonderful, brilliant, extraordinary people were on the autism spectrum, many undiagnosed at the time. It may not seem like much of a blessing now, but perhaps it will be someday...

    December 11, 2009 at 2:42 pm |
  12. A behavior analyst

    In response to EJ:

    I am sorry to hear you had an unpleasant experience with ABA. However, before you bash the entire field, I think you should understand that ABA is based on science. There are many techniques with ABA. Perhaps you did not like the techniques selected by your therapist. That's OK. There are others. Perhaps it was your therapist's application. Maybe a focus on punishment. I don't know.

    What I do know is ABA It is well researched and I encourage any parent to examine the research (Journal of Applied Behavior Analysis, Journal of the Experimental Analysis of behavior). Applied Behavior Analysis is the application of behavioral principles. Behavior Analysis is the study of learning. Its application goes beyond autism. I use the principles of behavior analysis with my boyfriend, with my dog, with my client, with my parents, with typical children, with my boss, etc... We all do! Punishment, extinction, positive reinforcement, negative reinforcement etc.... These are well researched and established behavioral principles. They operate every day and govern our behavior. It goes way beyond "rewards." Human behavior is complex and so is the study of human behavior.

    Anyway, before you claim something is "snake oil," I encourage you to look beyond your single experience. Look at the research. Check out some books from B.F. Skinner (e.g.,Science & Human Behavior), Murray Sidman (e.g., coercion and it's fallout) Quite honestly, many "treatments" for autism are not evidence based.

    December 10, 2009 at 8:31 pm |
  13. Catherine

    Nobody is bothered by the fact that this child has been put through 40 hours a week of 'therapy' to change who he is and become more 'normal'? My son has autism and I have been doing everything I can to make his life more enjoyable but I certainly don't think that giving a full time job to a toddler is beneficial. Oh for sure, he will act more 'normal' but your child will ALWAYS be autistic, no matter what some doctor says. This is bull. Nobody can be cured. I will never beleive that these people had a proper diagnosis if they claim their child is now typical. No way.

    December 10, 2009 at 6:07 pm |
  14. Ricky Mavers

    Why so many stories on autism??? Every time I go to cnn.com it's another autism story!

    December 10, 2009 at 2:12 pm |
  15. Autism Dad

    Ask, research, read, get opinions from other partnts, doctors, therapist , get involved, learn what Autism really is and its possible causes that might give you a good lead on your next step, you could do a lot for your kid , do not give up, act. Nobody is going to do it for you. Many of our pediatricians, neurologiost are not trained, or experienced on this problem, yet.

    For some people that we know, ABA was the solution, for others, however, RDI therapy, supplements , special diet , B12 injections , hyperb. chambers or chelations produced much better results.

    December 10, 2009 at 1:58 pm |
  16. Jonquille from Memphis

    My son, Rashad has autism, He just turned 3 and he still haven't start talking. I also have a 3 month old son and he will not pay attention to him. One day, I hope to hear him say mom I love you!

    December 10, 2009 at 1:23 pm |
  17. Chelsey

    This is a really great story. I do not know much about ABA, but I do know another alternative therapy rout. Chiropractic care and nutritional guidance has done wonders for many autistic children in many different neighborhoods around the Chicago Area, and all over the world actually. I just want to put my two cents in:

    All Children were born with an innate intelligence to heal themselves, as long as there is no interferance!!

    December 10, 2009 at 11:03 am |
  18. loretta Roberts

    My grandson has Autism. My daughter and son-in-law tried ABA
    therapy and his progress was amazing. He could talk, go to school,
    and we found that he is an intelligent little boy. At 7 years old we notice
    that he is very aggressive. He lashes out and is very hard to control and it is frightening. Autism is a brain disease like Bi-Polar or Schizophrenia. I really think ABA therapy is great, but not the cure. Every child's case is unique.

    This story is a wonderful story, and I am so happy their son is fine. He
    obviously had a very mild case of Autism.

    But where do you find help for aggression issues? ABA psychologists have left my daughter and son-in-law feeling helpless. There is more to Autism than just delayed speech and social skill He is a loving
    wonderful boy most of the the time. His aggressive tendencies have to be dealt with, but how? Does anyone have any suggestions?

    December 10, 2009 at 8:10 am |
  19. denise

    I'm asuming that Ms.Exkorn's son was on the less severe end of the spectrum.....of course you have to have a bit of money to afford the kind of therapy she bought for her child...... most of us on the other end of the spectrum need years of therapy for our kids and doing it on our own is the only option.....yes we do it but it brings us to financial ruin....unfortunatley we don't have spare time to pen autism source books....maybe she should voulunteer some of her time to raise money to help others afford therapy.....instead of pushing her books at other peoples fundraisers who are trying to raise money to get services for people less financially well off.......

    December 10, 2009 at 1:12 am |
  20. TB

    I am a special education teacher working with preschoolers diagnosed with Autism and feel I have a strong grasp of the realities of the disorder. Autistic disorder, a type of Autism Spectrum Disorder, is on a spectrum meaning it can range from mild to severe. Children like this little boy are most likely presenting with mild characteristics. A child with mild characteristics is more likely to develop speech, greater social interaction skills (eye contact, sharing/turn-taking, etc), and have the ability to self-regulate their sensory needs. These types of stories are great though may give those parents who have children with severe Autism false information. Autism is an extremely complex condition which can't be "cured." A child with severe Autism will most likely require life-long assistance to communicate, self-regulate, and complete daily self-help tasks. I understand that it may be devastating to have a child diagnosed with Autism. Please know that early intervention is extremely important and beneficial for your child though please work to accept your child as he/she is. Children with Autism are such special and beautiful people who can teach many people patience, understanding, and compassion. They have a purpose in life just like everyone else. Embrace Autism.

    December 10, 2009 at 12:32 am |
  21. AspieGirl

    For all you parents whose kids missed their early intervention window–I didn't get diagnosed w/Asperger's until I was well into my 30's. With a lot of hard work and 20+ years of help from my husband, I've learned to pass as neurotypical in your world.

    I think it goes a lot easier when you're younger, but it IS possible to learn new ways of reacting to the world around you. It IS possible to learn how to interact in socially acceptable ways. It IS possible to learn to cope with sensory overload and desensitize yourself to a degree.

    Identify the things that aren't working for your older kids. Triage them according to how much they negatively impact your child's life and then start picking away. My husband and my son are like my trusty native guides, letting me in on all the crazy little secrets you humans have. They gently and consistently let me know when "my cyborg is showing" and tell me the way a human would do things.

    And I try. Sometimes I fail. But I keep on trying and learning and practicing and now people are often surprised to hear I'm on the spectrum. Am I "cured" ? Absolutely not. I am what I am and that's not fundamentally going to change. When I'm under a lot of stress, I DO revert back to my basic Aspie programming. And then my years of coping and practice kick in and I'm able to resurrect that human interface that makes it so much easier to deal with this world.

    I am not cured, but consider this...I've got a strong marriage to a wonderful man. I'm mom to the coolest kid on the planet. I have friends. I can be sociable. I've had phenomenally awesome careers (running the gamut from USCG Search & Rescue to web designer and writer. I've had fantastic adventures and the bottom line is I am happy with who I am. Isn't that what we all want for our kids?

    December 9, 2009 at 11:47 pm |
  22. Jane

    In response to the parent who pointed out that "ABA is not the only hero," I would say that I never heard of ABA while I was essentially providing 24/7 "treatment" for my son. I was said by an occupational therapist we consulted to be "the most intuitive parent I've ever had." I don't say that to brag, but rather to point out that we parents very often have keen intuition into what our kids need, but because we don't understand how to sync that with what the world expects us to do with our kids or expects our kids to do with the world, we censor our intuition and do things that don't work, like threatening a child to try to get him to do as we say when he's so overstimulated that he cannot do it until he can find relief from the stimulation and rest for his senses. I would coach others to do what works with my son, but they would not do it because they were certain they knew better. I remember a woman who said, "I've had thirty years of child care experience! I've seen it all. I can handle anything." I expressed deep concern about the pen-like setting, where kids were crammed into gated open rooms, and I told her that was too much stimulation for my son. Well, he naturally tried to leave that so he could get away from what seemed to him like a wild rock concert all day long. I came back after two hours, and the "experienced" worker was shouting at me very angrily because my son had tried to leave, telling me what a "horrible" child he was and how I needed "counseling" on how to "discipline" my son. But, my crime was in understanding his needs and communicating them and his was in having the needs and meeting them himself by leaving the room.

    The point was that I knew intuitively what he needed, as did he. We worked together to meet his needs. We communicated a lot, 24/7. We tried different things. We did what worked. I understood the concept of giving him time and space for his senses to integrate. He is now more able to determine social appropriateness in many settings than I am. I am very good at positive social communication. But, because i have a high IQ and a lot of very finely tuned diverse professional skills, if I work in a setting that is not challenging for me, coworkers feel threatened no matter how humble and kind I am to them. They may begin to sabotage my work or my reputation, and while I recognize that something negative is going on, I am at a complete loss what to do about it. People lie, don't fess up, and promote discord. That is a major problem for me at work when I get into those situations. I try to counter it by being over the top nice, but it just gets worse because they trample me more and see me as weak as a result. That doesn't usually happen in engineering type environments, environments that directly reward high achievement, and environments where professional standards are truly promoted and enforced. I am very successful in those environments. My son is now better at navigating more diverse social situations because he had the support and time to learn from his environment and my regular tutelage in negotiating many situations that he was misreading. So, now, in some situations, he can see danger areas and advise me on how to get around them or avoid them. He learned by having the time and access to observe intensely which is what Asperger patients are veyr good at, process and analyze, and test and optimize strategies until he really became a master at dealing with those situations, at least comparatively. He is definitely naive in some ways, thinking well of people who are trying to take advantage of him, but he is also far better than the average teen at avoiding the kids you would want any kid to avoid and pairing himself with the kids you would want your child to be around. He walked into middle school at age twelve and did this immediately well because of the years of experience doing it in very small groups and gradually becoming more experienced in larger groups and for longer periods of time. I often consult with him. I don't mean that I'm a social clutz, as no one would say that of me. I'm in fact, considered very charming, in command of the social setting in many cases, and good at influencing others toward positive actions. It's simply that in very specific situations such as subterfuge in a work setting, I have difficulty realizing that others would really do the negative things they are doing and figuring out how to defend myself. I'm still learning, and I will say that I have my admirers in most work settings who will try to defend and protect me in those situations. But, I know that is my weak area. I remember being told in a rough work situation where people were generally very poorly behaved, "Don't trust ANYONE!" I still have a hard time believing that is necessary, but apparently it's more necessary than I know.

    My point in all this is that there are ways that kids can learn what they need to learn to adapt well, and we need to recognize that those are not necessarily in group settings or with a professional therapist, and that we all have our quirks and disabilities, even if they are viewed as not being part of an autism spectrum disorder. I have them, and perhaps it is partially genetic, and everyone does. The "spectrum" is not a two-dimensional line bur rather a many dimensional, constantly changing universe of variation.

    December 9, 2009 at 11:42 pm |
  23. Jane

    I will add that, while many individuals with untreated or treated and persistent major autism symptoms are obviously abnormal and do have very significant challenges, many, many people who are considered normal in general yet non-average exist very successfully and some extraordinarily successfully without being identified as autistic, despite having significant signs of autism spectrum differences. I use the term differences because in many of these individuals, this really does not amount to disordered behavior or adaption even though they may not be average in some ways. People who have been said to have Aspergers include Bill Gates, Albert Einstein, Michael Jackson, and many, many others who have achieved at extraordinary levels. All were quirky, often in ways that did not truly interfere with their ability to have productive, good lives. The challenges that Michael Jackson had were dramatically amplifed by the extraordinary negative pressures on his life, including childhood physical and emotional and verbal abuse, childhood sexual abuse by exposure to stripping, being mobbed by crowds of thousands, being unable to participate in the normal range of childhood activities with other children, being unable to be in normal relationships with other children and adults due to his extreme fame, being unable to simply walk down the street safely, etc. Had MJ not been subjected to all this, it is likely that he would have achieved less that we recognize as great but that he would have developed more normally on a psychiatric basis and likely would have been a high achieving, likable person with a normal social and family life. But, one can see how having Aspergers in his situation would contribute to his troubles. He was very sensitive and would have reacted differently to the overstimulation of the crowds, the lack of cooling off downtime from that stimulation, the social pressure from all the female adoring fans and those who hoped to have a personal relationship with him, the situation with Diana Ross where she seemed to be shamelessly flirting and leading him on such that he was totally in love with her but could not see for years that it was not real on her end, and the dilemma of dealing with so many opportunistic hangers on that were difficult for him to judge as to their trustworthiness. His frustration with being betrayed, and his separation from other children in his youth, led him to believe that only children could be trusted, to idealize them to the extreme and reject adult friendships to some extent because they were not safe to him. He felt helpless to make those judgments, to protect himself, and to have normal relationships. These are my impressions from reading a lot about him since his death and not of course first hand. But, I'm saying that there is a lot of greatness that is promoted by characteristics that come with Aspergers, and there is a lot of greatness that is suppressed with the mindless abuse and neglect that can come from people who do not recognize the gifts but rather only recognize the differences and attempt to suppress the source and all the greatness that comes along with it.

    We must always remember that a person who does not display reactions we think are normal is not unable to recognize or process what they would be reacting to necessarily, but may in fact simply be unable to respond in a way that we would recognize or understand. A person with Aspergers may be analyzing something very intensely, noticing far more than the average person, and because the processing power is being used for the analysis, it is unavailable for communication at that time. Very often, these individuals are misunderstood as not noticing or recognizing things in their environment when at the very same time they are noticing everything, analyzing it all to the nth degree, and not able to do all that (which the average person cannot do and must filter out or pay attention to only a little at a time) and also respond to us to let us know their reaction or assessment.

    When my son was five, I had to close down my day care when the house was sold. I temporarily put him in a large, crowded, busy day care that I didn't like at all but that I was told had staff with special training. They expressed concern that he was "not making friends" despite the fact that he easily made friends in my day care, at the playground, in the grocery store and elsewhere. I asked him why they would say that, and he said, "It's not the right environment for me to make friends. In our day care, there were only a few kids, and I could pay attention to them and have discussions with them. At my new day care, I have to pay attention to a lot of other things all the time so I don't have time to make friends." The "highly trained staff" insisted that he was shy, backward socially, uninterested in other kids, etc. though in all his previous life this had been the opposite of the case. A crowded, loud day care staffed by poorly trained, exhausted and somewhat bitter staff was, as my son said, "not the right environment" for him to function normally. Based on my observations as a degreed teacher, mother, and former licensed day care operator, none of the kids there could interact normally due to the very same conditions, but they adapted differently than my son did. My son tried to leave the room after a while and find a quiet spot to read the classic novels he snuck into day care as only board books were allowed there. The other kids built up defenses like pushing way or threatening kids who got in their space, bullying other kids, zoning out in front of a television, and so on. Years later, after I had provided the appropriate environment for him, he attended a birthday party where he was the calmest kid there and also interacted very nicely with other kids, even providing diplomacy in a conflict to help the "normal" kids work out their problems. His analysis skills, which I promoted rather than intimidated as many teachers do to quiet kids who want explanations or give their understanding and are seen as arguing, had become a strength and were seen as signs of maturity by then, not signs of abnormality.

    None of this talk about ABA and recovery is intended to intimidate, blame, or pressure parents of autistic kids. Every on is different, and yet every one has potential. Rather that stressing parents, I hope that parents who are looking for answers or who did not consider recovery or improvement at this level to be possible will investigate and talk to different experts and parents who have been successful with these things to at least consider the possibilities for their specific child. There is no harm in considering all possibilities.

    God bless you.

    December 9, 2009 at 11:09 pm |
  24. Danielle Newton

    As any early childhood educator, I teach 4 year olds, it was devastating for me to hear that my son was autistic. (He was fine until right before age 2) We are in an absolutely awesome ABA therapy program right now. We are completly expecting that our son will one day function as a productive member of society. Of course, there are different degrees of autism, just like their are varying degrees of "normal". I absolutely agree that some children can make progress to where they no longer can carry the diagnosis of autism. This is after many long, intensive hours of ABA and a family who bombards their child's life with language and direction. No, not all children will "recover", but to say that children who no longer meet the criteria for autism, never were autistic to begin with is ridiculous. ABA is proven to be effective! And like I mentioned before, even so called "normal" people have issues and learn in different ways. Please don't be so negative about the progress that children can make when in an effective ABA program!!!!

    December 9, 2009 at 8:58 pm |
  25. Laane

    As long there's no good protocolled way of diagnosing autism, done by well trained teams of psychologists and psychiatrists what is called autism can be anything.

    As long as there's not enough effort to use the same diagnostic protocols, no good studies can be done.

    I know that some children do well with certain forms of behavioral training, but it can't be said that all autistic children will do well.

    The word recovery suggests that the person in question is cured.

    But even those who do well with ABA will be autistic until a real cause and cure will be found. ABA and other therapies offer the person and his environment ways to deal with life in a structural way.
    When the person stays close to his self confidence and the way he is treated he will do fine. At his own level.

    I think it's dangerous to preach ABA is the best solution.
    We need to be aware that autistic people need to be accepted for the persons they are, at their own level of development and with all the adaptations from those around them they need.

    –Laane is a psychologist, mom of 4 autistic children (age 17 to 23).–

    December 9, 2009 at 7:24 pm |
  26. autism mom

    Wow, the comments are more interresting than the story here! The story I have heard many times before, by personal encounters with parents and media, many share the experience encouringly enough.

    Just leaving a comment to offer some hope to the person who wrote above that his son was 14 and wondered if there was any hope. Well, I met an autism mom and her 16-year old son. The 16-year old kid seamed like any kid his age. Later his mother explained that he did have some minor issues to overcome, but the difference from 2 years earlier was huge. He had been clearly autistic by 14. His parents had never heard about ABA when he was little. At 14 they started treating him with HBOT and diet, and by 16 he had moved to a normal classroom, had friends and all that. He talked a lot about his childhood, about how he would feel traped in his own behaviour, how he did notice things around him but was never able to express his response. Today he gets very upset when he hears about how some people don´t belive there´s anything you can do about autism, he describes how his life has changed and he urges others to try what he tried.
    Others that offers hope for older individuals are the Option Institute and the Son-Rise program.

    December 9, 2009 at 5:47 pm |
  27. Anne

    It is important to note autism is a spectrum illness: some have mild forms, others need to be institutionalized for their safety. But what is considered "fringe" at this time, can very well develop into sucessful treatment.
    I use to have my horse boarded with a pony belonging to a 13 year old who had some speech problems, but when I spoke with her parents, I found out she had actually been at an inpatient hospital for several years before she was five due to autism and unable to speak or respond to any stimuli. Her parents were fortunate enough to be able to afford hippotherapy (use of horseback riding as physical therapy to stimulate response). She began a dramatic transformation that ultimately resulted in her return to her home, in school and functioning at age level, albeit with some speech and socialization issues.
    Keep studying the different therapy options; that's how progress will be made with this terrible condition.

    December 9, 2009 at 4:09 pm |
  28. A. C. Patton

    We are also in our first year of finding out our son, age 3 has autisim. Having worked with kids with this disorder, I recognized something was wrong in the beginning, but my pediatrician was not worried. She said boys don't talk as soon as girls do not to compare others to my son. I am glad the lady in this story's son is fine. It is not every child that can get the "cure" level from this ABA. One reason is lack of funding. Parents have to pay for these sessions out of pocket. We had to take him out and put him in the public school system because of the cost. It is quite expensive. It did get him to talk and interact before he went to school though, which we are grateful for. If they could find a way to make insurance pay for the therapy, then I think parents would take more advantage of the services. They are just so costly when you take them every day 2-4 hours each day, and you pay $15- $25 per hour. It adds up to an awful lot at the end of a week and even more at the end of a month. If you see how much it changed our son, you would say it's worth it. However, we just can't afford it. If they could get that part worked out, it would be great for autistic children everywhere. Our son is doing fine in school and he loves it. We are so blessed he has a high functioning level of autisim. He will adapt easily and adjust to changes easily during his life. He has the ability to learn and not forget anything they teach him. We know he will go far.

    December 9, 2009 at 4:08 pm |
  29. Megan Meuer-Becker

    I have two daughters with autism. Both are high functioning and have improved since their diagnosis. In response to the question about recovery, recovery means different things to everyone. It might mean that your child speaks for the first time or can do some things independently. It's subjective. Every triumph is a step towards recovery.

    December 9, 2009 at 3:22 pm |
  30. Jess

    I agree that this story may have a few holes in it, that perhaps Jake's diagnosis was a little bit more complicated than straight Autism spectrum disorder, but I am really shocked by how many parents with autistic children and so very angry, claiming that ABA is snake oil, and trying to dissuade others from trying it.

    Autism is such a mysterious thing. It is not a curse. There is no magical cure. ABA does not work for all children with autism, maybe not even MOST children with autism, but it works for some. And I've seen it. I've spent the last couple of years working with teaching children with autism, using ABA therapy, and I have seen amazing and miraculous things happen in the minds of these kids.

    I can't imagine how difficult it is raising a child with autism. And my heart goes out to all the parents who have tried ABA, floor time, and other therapies out there, and aren't finding anything that works. But just because it didn't work for your child, doesn't mean that it can't work for someone else.

    December 9, 2009 at 2:13 pm |
  31. DS

    I wanted to add to my comment that ABA isn't the only thing we did. We did our own OT (occupational therapy) and speech therapy and social skills training. There are so many books on how to do these therapies. You just need to be willing to take that step to do something. It's easy to say autism is untreatable. It's a lot harder to do something therapeutic. The Out of Sync Child and The Out of Sync Child Has Fun helped us with OT matters. We got speech books from Hanen. They have a website where you can get the books. They also have seminars however we lived so far from their seminars that I just got the It Takes Two to Talk book and did the therapy myself. I think Amazon sells that book as well.

    You, the parents, can do a lot of this yoursef. You don't necessarily have to pay thousands of dollars to professionals. It takes a lot of patience, time, and repetition, but the rewards are so worth it. Join parent groups. Yahoo has so many autism parent groups. It's free. You can get books from the library for no cost. If your library doesn't have the autism books you need, they can get it from another library through an inter-library loan. You can go on the internet. There are so many websites and blogs with great information. There is no reason in this day and age to think you don't have the resources to help your child. You can help your child. You have the resources. It is not easy to teach a child with autism. Believe me, I know first hand what it's like. However, no one else is going to be vested in your child's future like you are. No one. School officials aren't going to magically fix your child. Children who make great improvements from their autistic symptoms have parents who put in hours and hours of their own efforts to helping the child to communicate and function better. There are people who do ABA on their own. Read Juli Liske's book In the Eye of a Hurricane. She and her husband did ABA on their own because their small rural Kentucky town didn't have any services for autistic children.

    I agree with the previous poster who said the reason some bash ABA therapies is the realization that they could have done something but unfortunately no one told them about the various therapies that are available today. I feel for those families. However, it's never too late. Don't give up on your child. Your child may not go to college, but he or she can improve their ability to communicate, be a part of the family, go on outings, sleep better, etc.

    December 9, 2009 at 2:07 pm |
  32. AKBER A. KASSAM

    Ms. Kiran Chetry.

    With all due respect, one old debate is happening again in this conference. The same old history that happened in 1972: Why the developing countries such as India and others cannot develop in the same way the developed did?

    We always see every day that the growing economy such as INDIA leads to more consumption. More air travels, more stuff being transported through roads, railroads, ships, planes and so on. Thanks.

    December 9, 2009 at 12:43 pm |
  33. Quezz

    I was diagnosed with "borderline autisim" and later with Asperger's Syndrome, but I had early intervention and intensive therapy and function pretty much normally. I know other students in the school I attended had achieved significant success compared to students without intervention.

    Still...my story and this one I think are offering false hope. This is quite rare. I'm not sure how I feel about it.

    December 9, 2009 at 12:25 pm |
  34. Lauren

    While I am not a parent, I do have plenty of friends who were diagnosed with autism at various stages of life. With a handful of these people, they were wrongly diagnosed, and that was only discovered after their original diagnoses was 'cured' or 'fixed.' Autism is not something that can be cured because it is the way that the child simply is, just as I am caucasian and cannot 'cure' or 'fix' that. With another few of my friends, they were later diagnosed with a different mental disorder that in some cases was more severe than the typical autism diagnoses, and in others less severe. Autism is indeed over diagnosed in this country, and it only feeds the epidemic of 'miracle' stories. If your child has been 'cured' of autism, perhaps you should look more closely at the original diagnosis.

    December 9, 2009 at 11:41 am |
  35. JES

    Ugh! Anytime I hear a story like this, I think that the story is reporting from the results of the ABA, and not realizing the power of the parent and the child himself! Yes, the parents are commended, but not much attention is paid to the things that parent did that might be quite different than most. Let me explain. My point is that it might not be the ABA at all that is causing this recovery, but the tactics used by the parents of the child. Here goes:
    My own son fell into the criteria for having autism, also had (has) OCD, some tics, many sensory / occupational issues and is hyper-active. He had a real hearing problem requiring surgery at the age of three, so much confusion about what was due to developmental issues vs. hearing. He could and can speak, just had no understanding of anything other than very literal interpretations and exact facts. No ABA for him – what he needed was self determination, and a will to beat all of this. He is soon to be 11, and in the last 2 years has gained developmental milestones he should have had for 7 years prior. He gained them through exposure to regular social and academic integration at school and in the community, as well as a determination by his parents (us) not to give too much focus to labels and keep discussions about his specific needs with him and the school based on very specific needs – I refused to have him on an individualized education plan and no labels were to be involved. Every kid has needs, and his were greater but so what? Deal with them as needs, not a label. He may have had many more, and they may have been more intense and complicated. The most important thing for me as his mother was for him to understand his own needs, why he had them, and how HE can change them and the way his brain works as well as how he feels, but only if he wants to understand and change this will it work. By the age of 8 he had a thorough, adult like understanding of OCD and when given the proper information regarding CBT was able to move through his own steps of recovery with my assistance. As for the social, sensory, occupational, behavioral, etc., If you're going to teach them anything early on, make sure you teach them that they are in charge of monitoring themselves in any situation. E.g., if a child is able to communicate in some way that the lights are too bright, that the crowds of people are making him feel unwell, that he has a need to spin in circles, flap his hands,make noise, etc. This ability to recognize his / her own feelings and learn from you what is causing them, and what he / she can do for themselves to make it better – is the ONLY way he or she can improve enough to lead a productive life. And before you say to yourself, "ya right, my son only communicates screams and this would never work"..think again. Those screams, flaps, spins, behaviors no matter how outrageous ARE communications to you. You are the one who is not doing your part to learn what they mean. Imagine knowing what every single action meant, so that you could respond appropriately? Imagine being a child in pain trying to communicate their pain through a scream, and a parent responding with an M&M? Well, the pain is still there, no one helped that go away, because no one took the time to understand how I communicate, but I did get a piece of chocolate!
    The formula is simple: Child + Parent + determination of both = success. ABA is not the only hero in this.

    December 9, 2009 at 11:35 am |
  36. Edward

    Folks,

    As i said earlier, every kid is different and therefore responds in different degrees to various treatments, including ABA.

    I want to add, though that some kids will respond to therapies like ABA better a second or third time after they have tried other treatments first.

    Check out the story of Katie Wright, whose son didn't respond to ABA and other behavioral/developmental therapies, until she went to work in treating medical issues in her son Christian. She restricted his diet (keeping out foods that affected him), loaded him up on varous supplements (due to decreased absorption in his digestive tract), and worked on the affects of toxins in his body.

    By the way, her parents founded Autism Speaks, a leading autism advocacy group in the U.S., and her son has made a lot of progress.
    Just remember that every kid reponds differently and in different degrees.... yet the more who try this get some kid of improvement.

    December 9, 2009 at 10:35 am |
  37. Edward

    Paula,

    Go to the Autism Reseach Institute (founded by Dr Bernard Rimland, who is also a founder of the Aut. Society of America), and check out the links there. Also type ATEC into the search field. This site also has both video and audio of lectures at its bi-annual Conferences.

    Also check out the websites for TACANow, AutismOne (has good videos to watch), and NAA (Nat'l Aut. Assoc.) Be open minded about all the treatment options that are mentioned at these websites.

    December 9, 2009 at 10:21 am |
  38. Mary Schneider

    I agree with Stacey's comment regarding ABA. My son had very limited ABA through the public school system along with other methods. Originally at the age of 2 he was diagnosed to severe autism and now is moderate. Most kids will improve but ABA doesn't cure.

    I also had the opportunity to see Stacey's play and it was fantastic. It was so real and very emotional for me. Would love to see it again.

    Stacey posted the website on her comment http://www.autisticlicenseplay.

    Just stay engaged with your child and they will improve. Accept them as they are and don't wear yourself out looking for a cure. I have two kids with autism and their uniqueness is their greatness!

    December 9, 2009 at 10:11 am |
  39. JR

    I am a Speech Language Pathologist. Autism IS NOT a curable disorder, it is not a disease, but is a disorder where marked changes in the brain occur from birth. It is not something that a child acquires-children can be identified (not diagnosed) but identified as early as 8 months old. Symptoms may be treated and may change throughout a child's life, and a child can have a happy and successful life. Progress can happen, and lots of it for that matter, "losing a diagnosis" however, I don't believe so. Accept your children for who they are, love them, and participate in the things they enjoy with them.

    December 9, 2009 at 9:46 am |
  40. Daisy A.

    This is a very sensitive story that indeed put an smile on the faces of whoever read this story imagine on the faces of parents with Autistic children who have lost hope about their children normal functioning and suddenly with these wonderful programs like ABA and early intervention these families start to smile and see a bright future for their children that overcome Autism. .
    It was a cute story!.

    December 9, 2009 at 9:25 am |
  41. Edith

    I am just disgusted by some of the "ignorant" comments left from people... First off early intervention DOES work for any child autistic or not with developmental delays especially autism. My son was diagnosed with severe autism at the age of 2, but I knew at 4 months something wasn't right. He started therapy (not ABA) at the age of three due to ABA was not covered or available in the area we were stationed at. We have recently moved to Colorado and receive ABA 15 hrs a week/covered by our insurance now, and he has progressed very quickly socially/academically/language/self-help, etc. that years of other therapy couldn't do. He is now diagnosed with a higher/mild autism with savant skills, and continues to improve daily at home, school, outside activities.

    Autism can NOT..repeat NOT be cured a child can adapt so much that the behaviors, etc can be controlled by the skills learned in therapy.. It is appalling also that some people consider this a disease..What is YOUR problem..God created us ALL in his image and we are ALL his children!! We ALL have imperfections and the abilities that my son has with the autism is nothing short of AMAZING!!!! He loves people NOT by who they are/think they are he loves them for the person that lies inside, he finds joy in just truly living, he teaches me/everyone who meets him what the TRUE power of acceptance is (most of us have forgotten that).. I pray everyday to God that society as a whole will accept, appreciate, love, and respect ALL people with ANY type of disability.... It is very sad that the people that DO understand the true meaning of this life are the ones that are living with a disability and ignored in a sense by society, so think about that!!

    For parents' of autistics or any disability support, encourage, respect, love, and accept your children!! It is truly amazing what a child can do with the right support system!!

    December 9, 2009 at 8:30 am |
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