Most children with autism see improvements as they grow up, but new research suggests that a select group is experiencing more dramatic progress than others.
In a study of nearly 7,000 California children with autism, researchers found that about 1 in 10 kids displayed rapid improvement over just a couple of childhood years. The so-called “bloomers” were able to transition from being severely affected by autism to high functioning, researchers at Columbia University reported online Monday in the journal Pediatrics.
Significantly, those behind the study said children were more likely to bloom if they did not have intellectual disability and if their moms were more educated individuals from non-minority backgrounds.
The study was based on data collected by the California Department of Developmental Services on children born between 1992 and 2001 who were diagnosed with autistic disorder. Kids with related conditions like Asperger’s syndrome were not included.
Researchers looked at assessments of social, communication and repetitive behavior functioning for each of the children over time. Many kids saw varying degrees of improvement in social and communication skills, but fewer changes were seen overall in repetitive behaviors.
Despite any improvements, all of the kids in the study retained their autism diagnosis.
“I think this is a hopeful message that most children do improve over time and some improve quite rapidly,” said the study’s lead author Christine Fountain of Columbia University.
However, Fountain added that much more needs to be understood about what types of treatment or experiences lead some children to see greater progress — something that could not be deciphered from the data her team relied on — especially given the socioeconomic disparities uncovered.
My daughter who has autism also has Down syndrome so she doesn’t fit into the model, but she has really recovered a lot in the last two years since getting the appropriate treatments. It took us longer than it should have to get things going – had so much trouble getting the school district to believe what we were being told by doctors (and what I had suspected since she was 2 years old), which was that she had a dual diagnosis, but with good interventions done by capable and caring people she has come so far very quickly.
This is great that there is hope for children in these situations. Growth is what you always want for your child in any situation. I love my child’s teachers and school. I think that we have collectively had an impact on my child, especially socially. This is where it really counts bottom line.
Not too sure why this study took up funding dollars. Seems to be a no-brainer to me. If you are better educated, you are more likely to know something is wrong with your child. Much as if you have education, you have a better job, better jobs tend to have better insurance, better insurance gets you to the doctor every year, getting to the doctor every year allows for testing and changes in tests, SO this allows people to get early intervention if there is an issue, allowing them to survive or be treated. This is the case with autism. I was lucky enough to be a teacher and I knew when something was wrong with my girls. I knew the signs, and thank goodness I did. Had I listened to my friends, I would have ignored the concerns and avoided therapy that has changed their lives. When therapies, doctors, and other services run upwards of 50-75K per child, it is easy to see why treatment is had by everyone. Pay now or pay later. If these children do not get the services they need in the form of early intervention, you will pay for them in disablity for the rest of their lives. It is a sad reality, but reality nonetheless.
My son was diagnosed at 18 months. He didn’t speak his first word until age 4. He is now high functioning and in regular 3rd grade. He just graduated his therapies and is in the gifted program at school. He still has a few small things but overall you can’t even tell there is anything wrong. I got him treated right away with many therapies and detoxed him. I also put him on the gluten free/dairy free diet while he was being treated. I am not highly educated but I learned from the therapists. While they were away I spent many hours doing what they did on my own. I think some things they outgrow but if you have the time to work them outside of therapy it helps tremendously.
Perhaps it’s because we have no truly valid diagnostic criteria or etiology?
To give an analogy: two people with sore throats-
-one because she cheered too much at a sporting event.
-0ne because he has throat cancer.
Certainly one of these two will have a better outcome than the other – with or without GFCF, or mega-B, or whatever.
Author? Title of study? Link or access info? Explicit findings?
I have noticed that most of those kids that improve over time usually is related
to changes in environment like more social interactions with parents
and avoidance of TV and DVD like baby Einstein for infants.
Being from PR our children speak Spanish but most of our autistic children’s
first words, or understanding of words is in English. I really believe that
poor communication with adults and excess of technology creates this
so call autistic children that improve with time and behavior therapy.
Those that are really autistic have some improvement but not as impressive.
Has anyone seen this phenomenon ?
Please tell your parents to avoid TV in the first 3 years of life.
re:
I agree that many stories presented here mention studies in passing without links. When asked for them there is usually no response. It would be helpful to give us the actual study links as well so we may do more than just infer from a reporter’s opinion of a study.
That being said, my son was diagnosed at 4 yrs in 96. We were part of that bubble of more accurate diagnosis due to living in LA where UCLA’s Neuropsychiatric Unit was at the forefront of ground-breaking research regarding autism diagnosis and service – thank you B.J. Freeman: http://www.semel.ucla.edu/autism/about
We fought school districts that were at first in the stone-age, but are now providing the very services for younger children that we once fought for. We can also thank Donnalyn Anton (retired in 2011) former Director of LAUSD’s Division of Special Education. When she came on board (can’t recall exact year-95?) her first order of business was to change the “culture” of how all LAUSD personnel perceive our children. “We teach those whom we are given” was her motto. The general teaching population needed to see these students as children first – then view them as children with disabilities in need of additional services to access curriculum. Having a Consent Decree helped change attitudes also: http://www.oimla.com/
Children bloom when all members of the team work together: school, regional center, service providers and family. It takes a village, but it’s sometimes difficult to form that village in the current budget climate. While being better educated or having a higher income level does help in some cases – cultural misunderstanding or family denial can cause problems with a child’s growth and development as well.
Treatments vary depending on the child. What works for one doesn’t necessarily work for another. It’s difficult as autism diagnosis falls on a “spectrum” – no two children have the same severity or needs. It was trial and error with our son, but with the guidance of a team consisting of a behaviorist, psychologist, psychiatrist, OT and Speech Therapist.
People have to realize that the child can’t be expected to do all the work, either. My son is now 20 and in community college. I’ve learned along the way that I need to change my behavior and how I approach him. We all need to be on board and be expected to bring something to the party if we want our children to succeed. There is no magic bullet, no one specific therapy that works.
I’ve also realized that my son might always need assistance in some form. Families of typical children expect them to grow, graduate, go off to college or work, drive cars, have relationships. Our children might never go off on their own. My son is not ready to leave home, live in a dorm, drive or have a girl friend. Maybe someday he might – and maybe not. The realization that this is the rest of my life has taken some getting used to, but I love my son and hope that he becomes a happy adult with a meaningful life ahead of him.
He will not “grow out of” or “recover from” his diagnosis of autisim – it is an organic brain disorder, not a disease that can be “cured”. He will always think differently. He will always be perplexed by societal “norms” and expectations. With help from our support team (hopefully as long as he needs it which could be the rest of his life) he will be able to better “cope” with the typical world.
The full text of the study is available here: http://pediatrics.aappublications.org/content/early/2012/03/28/peds.2011-1601.full.pdf
Six Developmental Trajectories Characterize Children With Autism, by Christine Fountain, PhD, Alix S. Winter, BA, and Peter S. Bearman, PhD
I have to concur with Kelly’s comment that the finding that higher SES leads to better developmental trajectory is not surprising, however it is still valuable to study the relationship. Research helps identify specific factors/services that might make the difference to improve that disparity. The trajectories provided in the study are interesting as they might help in creating more attainable treatment goals and for providing insight into prognosis. It will be interesting to see if the trajectories are replicated in future research.
Sonja,
You have stated the situation in an articulate and solid way. Thank you for being so honest and sincere in your post. I am a college professor hoping to teach my pre-service teachers exactly what you have stated. We must start where the individual is, and accept them for who they are. We must have tools and strategies that are individual-centered. There is no panacea treatment, and no cure.
Again, thank you for your words.
My twins were born in 1998. They both have autism. I attribute their progress to intensive ABA at an early age with an exceptional team of teachers, and their most wonderful teacher in elementary school. Intensive ABA at an early age is key. I tried diets and other things and they didn’t work.