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Children who ‘recover’ from autism still struggle

by  /  12 May 2015

Lisa Shulman

When I evaluate children for neurodevelopmental disorders, I start with a simple question: If you had three wishes, what would they be? The children’s answers run the gamut from toys to world peace. But if I were to ask that same question of a parent whose child has autism, I know exactly what I would hear: I wish my child didn’t have autism.

Our multidisciplinary team at the Children’s Evaluation and Rehabilitation Center in New York City has the opportunity to diagnose autism early and help children and families access interventions to improve social and developmental skills. We follow these children over time. And every year, a few of them come back having made extraordinary gains. Some no longer meet the criteria for autism.   

These cases are rare, but not unheard of. A search of our clinical database reveals that 38 children out of 569 diagnosed with autism during a 10-year period — roughly 7 percent — lost their autism diagnosis. And our program is not alone in this finding.

Last summer, The New York Times Magazine ran a cover story entitled “The Kids Who Beat Autism.” The article highlights research by Deborah Fein involving a group of children who have achieved what Fein refers to as an ‘optimal outcome.’ For a nation in the midst of an ‘autism epidemic,’ and for parents facing the day-to-day challenges of raising an affected child, the possibility of autism melting away is a hopeful thought.

But in my experience, many of the children whose autism symptoms subside continue to struggle with daily life. Although all 38 of the children who outgrew their diagnosis in our program now have acquired normal cognitive abilities, they continue to contend with language problems, learning disabilities, attention deficit hyperactivity disorder, mood symptoms and anxiety.

Only three of the children have no learning or psychiatric problems, and most need continued educational support. A study published last month in the Journal of Neuropsychiatric Disease and Treatment found that most children who ‘recover’ from autism by age 6 still struggle with attention, language and social situations at age 10.

After presenting the findings from our program at the Pediatric Academic Societies meeting on 26 April, I was approached by two parents who described the lingering challenges for their children. From these conversations — and the many emails I have received from other parents since — I gather that the overwhelming response to having a child outgrow their autism diagnosis is relief, regardless of any lasting deficits.

Parents also express gratitude that an early diagnosis, careful intervention and luck have given their children a better chance in life. The needs that remain are not insignificant, but they’re manageable, they say. For this small group of parents, their wish has been granted.

Lisa Shulman is director of the RELATE program at the Albert Einstein College of Medicine and The Children’s Hospital at Montefiore in New York City.

11 responses to “Children who ‘recover’ from autism still struggle”

  1. Seth Bittker says:

    This is disappointing but not really surprising.

    Those with autism typically have significant abnormalities of biochemistry including high levels of oxidative stress, vascular damage, methylation deficits, sulfation deficits, and in many cases autoimmune markers and dysbiosis. It seems doubtful that these abnormalities can be addressed by behavioral interventions alone. To make more progress with those affected, we should be looking at how to normalize biochemistry.

    • Dms says:

      I agree 100%. At the heart of Autism lies Inborn Errors of Metabolism–physical symptoms behavioral therapy will not change. Autism research needs to change it’s trajectory by discontinuing the dissociation between physical and behavioral and start treating it as the medical condition it is.

    • Michal Krompiec says:

      It is true that some “biochemical abnormalities” are found in autistic individuals. This may be partly due to the fact that they have to cope with high stress and anxiety levels, and many of them do not eat well. But, leaving this aside, evidence of efficacy of therapies based on biochemical approach to autism is yet to be seen. It is a very important area of research – but nothing more, as yet.

  2. usethebrainsgodgiveyou says:

    You wrote up the abstract I read about on LeftBrain RightBrain, here: I thought it was amazing that 56% of kids started out with ID or borderline IQ, while only 6% of the kids remained intellectually disabled. Yet with the degree of LD or learning disabilities (68%) and externalizing problems at 49%( ADHD, ODD, and DBD) and internalizing problems at 24% (mood, anxiety, OCD,etc.) …it’s pretty obvious they are not “cured” of anything but the label. It ALWAYS bothered me that my son’s severe dysgraphia and cyscalculia were not addressed. I was trying to tell people, they aren’t autistic, they are LD! In my case, it was the case. He lost one label to gain two others. You’ve just given numbers to that reality, that I always saw, but couldn’t convince others of.

    I appreciate your honesty that just because your IQ goes up, sometimes WAY up, it doesn’t mean you are free from neurological disabilities. Good luck with this message, it needs hearing. The “feel good” label of optimum outcome doesn’t give honor to the severe difficulties the kids face. I am so thankful for my son’s outcome, just about as good as it could be, far better than I hoped for. But I know he carried and continues to carry a lot of burden on his shoulders that most kids never face.

  3. Amanda says:

    I’ve never understood the concept of “recovered” from autism. Sure, kids can learn strategies and skills to help them cope in a world that was not designed for their brains, but it only stands to reason that without continued assistance a child who has learned to pretend to be like other six year olds will struggle when expected to demonstrate skills expected of a ten year old. Thinking about autism as largely a personality type may help to clear up the confusion. I know many children struggle a great deal to function in this world and useful strategies are important, but who they are deep down isn’t changed by therapy.

  4. Lori Knowles-Jimenez says:

    This is not the case with my son Daniel Knowles. He is recovered, has not issues with language, social skills, academics (straight A’s with no assistance), in the drum line in High School, has a sense of humor, empathy,many friends, and goals for his future. I think you need to be careful with minimizing the reality that many kids really do COMPLETELY RECOVER from autism. At the age 17, he is driving and I have every confidence that he will go to college, find a good job, and get married. In addition, I am aware that he is NOT the only one.

    • yelekam says:

      That would be premised on the notion that his difficulties were caused by autism and that he somehow is less autistic. I would offer an alternative view. That what is commonly thought of as autism is an uncultivated form of autism and that when those of us who are autistic are cultivated to our natural direction we become well functioning human beings, who use our differences to our benefit, and in addition develop ways to cope to a society ruled by doxists (nuerotypicals). Just as you doxists have the capacity to develop into functioning adults and to some degree overcome the problems of your nuerology. so can we. After all you doxists start off with a tendency to mindlessly mimic others in thought and behavior, but many of you eventually learn to exercise independent thinking skills.

  5. Nicole says:

    With due respect, I believe your primary assumption, that all autusm parents’ first wish wiuld be that their children not be autistic, is on the wane. I for one, and I know many parenys who feel the same, would not wish their child was not autistic. And I dont believe in or want them to “recover”. I want to help them be the best them they can be, and I pray the harder parts of sensory issues and anxieties would be abated over time through therapy, but God created my children to be uniquely gifted as autistic people. If I wished that away Id be wishing away a part of who they are. And I would never do that.

  6. Flor says:

    I’m with Nicole. I don’t wish for my daughter to be neurotypical. Wishing for your autistic kid to “not have autism” means you actually want another kid. I don’t. My daughter is fantastic the way she is. She is learning to communicate better, which is the biggest struggle she has. When she’s older and can converse “normally” and is studying at the university, probably many people won’t notice anything. But that won’t mean she’s no longer autistic. People who where not diagnosed until adulthood and that can “pass” very easily for neurotypical do talk about how stressful it is to try to be “normal”. I don’t want my daughter to be stressed out all the time! So basically: I don’t want another kid, I love my autistic kid. And she’ll never be neurotypical, regardless of how she appears to people.

  7. Anna says:

    Lori, your comment is so offensive! People with autism also have empathy, senses of humour, and future goals. You need to educate yourself on what autism really is. It’s actually thought that autistic people have too much empathy, causing them to shut down from the world.

  8. Anna says:

    Also, many autistic people go to university and get married. I am one of them, and many of the autistic friends I have are the same.

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