New AAP Reports Call for Universal Screening for Autism
October 29, 2007 by Kristina Chew, PhD
Filed under Health
Today the American Academy of Pediatrics (AAP) is releasing two new clinical reports to help pediatricians recognize autism spectrum disorders (ASDs) earlier and also to guide families to effective interventions. The reports will be available on the AAP website; pediatricians will also receive “AUTISM: Caring for Children with Autism Spectrum Disorders: A Resource Toolkit for Clinicians,” which will include “screening and surveillance tools, guideline summary charts, management checklists, developmental checklists, developmental growth charts, early intervention referral forms and tools, sample letters to insurance companies and family handouts.” ABC News considers the “boon” or “bane”—the pros and con—of advising parents and professionals to screen all children for autism earlier at 18 or 24 months rather than when a child develops symptoms of autism, and also to start early intervention even before a formal diagnosis is received. It can take six months to one year to receive a definitive diagnosis.
My son showed clear signs of developmental delays at 18 months (in hindsight, I can recall delays when he was much, much younger, in his babyhood). He was diagnosed on July 22, 1999, when he was 2 years and 2 months old; he had also started to receive Early Intervention services in May, just before his 2nd birthday.
Was it easy to hear that something might be “not right” with Charlie? You can be sure, no.
Was it good to start thinking of how to help him? Yes.
Did Early Intervention, intensive ABA, various biomedical remedies, moving to different states and towns, giving up jobs and plans and spending a lot of money, “recover” him or result in him no longer being autistic? No.
He’s doing really well—a happy, talking (in one to three words segments), playing the piano, riding for over an hour on his bike with Jim on these lovely fall days, waking us up at 5.45am and then very glad to hang out till it was time to get up. We’ve known that “he has autism for most of his life, and I think that has been for the better.
This is good news. I had a good pediatrician who knew the early signs of autism, but not all of them are up to speed. So many parents complain of doctors who keep telling them the child is just a late bloomer. Or that, once the diagnosis is made, doctors just offer a doom and gloom approach regarding the child’s future.
Kristina, your attitude is so refreshing. It’s important for parents out there to hear that, even if our children are not able to become higher functioning or “recovered” after we provide them with the best treatments, we don’t need to lose all hope.
Our stories are oh so similar … Jack showed signs early, early on, but we just didn’t realize they were red flags at the time. He was diagnosed by our pediatrician at 2, but could have been at 18 months if we had known the early warning signs.
The way I see it:
Wait is a four-letter-word.
Fear is a friend who’s misunderstood.
Regret is a chronic condition.
Jack has received a lot of help and will hopefully continue to. He is happy and healthy … a joy to our family. I hope one day he’ll play the piano (he’s banging away on it again today while I type…) and bike with his dad too…
Yes, I think too many of us were aware that “something wasn’t quite right”, but were forced to “just wait” by doctors and therapists who weren’t aware of early warning signs, and thought our children were just taking their time.
Jaysen did not get diagnosed until he was 3, and that was just with a language disorder. An Autism diagnosis did not come until he was 4. I don’t like to think about what could’ve been done with earlier intervention, because you can’t re-do the past. I am thankful that we were able to find the services we have now, period. No parent should ever give up hope because it is never too late.
I agree with the previous posters. I think this is a really good thing. I wish our pediatrician had been aware of these issues. I also wonder if the fact that some doctors we saw were so ignorant of the early signs of autism contributed to our initial feeling of it being a misdiagnosis when it was finally diagnosed, or my husband’s feeling that our child had always been “normal” but that suddely something had “happened.” He does not see things this way anymore but for a long time he was sure our child had suddenly regressed and was casting about for whom/what to blame. I think if we had been aware all along that our child’s failure to point at things, failure to show us things, etc., were potential signs of autism, we would not have felt so blindsided and overwhelmed and angry when it did become crystal clear.
I also saw this, it’s remarkable how it’s now the 18-24 month olds that can be diagnosed. Here in the UK a 2 1/2 year old is still considered young and many paediatricians hesitate to diagnose at such early age. Personally, I question the benefits of early diagnosis, especially when there are no services available for children that young. Here in the UK, until the child is at school there is very little direct intervention available. We went down the ABA route but it didn’t work for us, and our experience of ‘early intervention’ was not entirely positive. I now believe that there is no such magical window of opportunity as ‘early intervention’ but that our children continue to learn throughout their lives.
Personally, I sometimes toy with the idea of how our life would be without the label, or if the label had been assigned later. Sami is 3 1/2 and for a year he has been autistic, although often when you watch him on a playground running around, on a good day he is indistinguishable from other children. Of course, on a bad day we don’t go to playgrounds…
It’s about time, I say! Our pediatrician brushed off our many concerns about Brendan’s development with a “my kid does that, too.” We didn’t discover that he was developmentally delayed until he was nearly 5 1/2 (& functioning at the fine- & gross-motor level of a 2 1/2-year-old) . His ASD diagnosis didn’t come until a year later… Thank goodness the AAP is finally taking leadership on educating pediatricians about autism!!
I think this is great. Our oldest son was diagnosed just before he was three, but there were signs as early as 10 months. He would obessesivley take round objects and spin them. He was actually very good. We used to joke that he was going to become a plate spinner when he got older. Fortunately, we were on top of things with my 2 year old. He was showing signs at about a year old and I immediatley got him services…he is getting his official evaluation but we know what the outcome will be.
As I understand it, there are concerns about pushing the age of diagnosis back so far, not only because of the possibility of parents beginning to see any “unusual” behavior as a sign of autism. Parents may be too aggressive in trying to “intervene” about their child. I’m not saying that some kids may just “grow out of it” (people used this phrase in reference to Charlie and it irked me no end), but that—especially with all the treatments out there and the sometimes miraculous results that they promise—parents may rush and do things that may not, ultimately, be the most helpful.
I tried some such things—a few years ago I threw out boxes of old supplements, zinc and DMG and bags of stevia and tapioca flour—-but the enduring thing has been education, and the patient and compassionate efforts of Charlie’s many teachers and therapists. I know I’ll be labeled an over-optimist, but my hope is that, if we keep trying to explain that an autism diagnosis is not a death sentence and that you can feel devastated, but you can move on, an early diagnosis can be seen as positive and a step in a long journey.
I am rather ambivalent about it. It is “good” since a lot of adults who have autistic children will come to recognize themselves.
But Every autistic child will grow up with the label of being broken somehow. How can that be good?
I am just waiting for the mandatory wearing of a puzzle piece to protect the public.
Our pediatrician still thinks that by the time my son will be 6 (he’s nearly 4 now), he will exhibit no autistic behavior! She kept telling us all the way, that there was nothing wrong with the child and that he was just a slow-starter. He got his diagnosis at the age of two and a half by a child psychiatrist who we were advised to visit only because the child had serious feeding issues. I now thank God for these feeding issues, as if it wasn’t for them, maybe we still wouldn’t realize or wouldn’t want to realize what is wrong with the child (thank’s to our pediatrician’s short-sight). After we got the diagnosis and talked about it with her, she said that she had a different opinion and she suggested that we visited a developmental peditrician (the one who is thought to be the best dev-ped in Greece) and so we did. His diagnosis was mild elements of PDD-NOS (one good way to avoid giving a diagnosis) but she still insisted that the other doctors were wrong and there was absolutely nothing about the child that he wouldn’t grow out of it!
I have a 17 year old son and I am just getting him an eval for autism now. Talk about late! And this came about only because he was expelled repetedly for inappropriate social interactions at school last year and I had to hire attorneys $27,000. This has woke me up to the fact that I am also autistic and have survived and adapted out of necessety. I am hoping that this “label” may give my son extra support and training, he is more severe than me. I think that letting everyone be aware of our autism may be a lot easier and less frustrating in the long run but who knows this possibly could limit a individuals potential some how I don’t know, depends on the circumstances. I have been such an odd duck all my life and compensating and learning to adapt has made me feel like a very old man at 38, the level of bigotry, contempt, insults, prejuduice and overall ignorance i confront daily is increadibly unbearable. I am beyond screening, I just want to give up and say I am disabled become instutuinalized or get some SSI or something because I am exhausted- burnt- joyless; is there somebody out there?
The label never bothered me that much, actually, because I knew I was different. In fact, knowing exactly what is different (in social terms) made a world of difference for my self-confidence.
So even though it carries the “broken” connotation, it is helpful. I do think that the “broken” bit needs to be worked on, because it isn’t really true.
Anyway, cheers
Cliff
I am hoping that within the next few years this idea of “broken people” will dissapear. Are people with dyxlesia, ADHD or other learning diablilities thought of as less? My boys are different and different can be a beautiful thing. My job is to be not only their biggest advocate, but their biggest fan. I hope that with the label my boys will be like you Cliff and take it as “oh…that is why.”
Just an FYI:
The news about the screening recommendation is making a splash, but a concurrent piece of news is that the AAP also released recommendations on management of ASD, and an updated comparison of treatment models.
Johnson, C.P, Myers, S.M. & the Council on Children with Disabilities (2007). Identification and evaluation of children with autism spectrum disorders. Pediatrics. http://www.pediatrics.org/cgi/doi/10.1542/peds.2007-2361
doi:10.1542/peds.2007-2361
Full public copy available at the above link with November issue.
http://www.aap.org/pressroom/AutismID.pdf
Myers,S.M. (2007).Management of children with autism spectrum disorders. Pediatrics.
http://www.pediatrics.org/cgi/doi/10.1542/peds.2007-2362
doi:10.1542/peds.2007-2362
Full public copy available at the above link with November issue
http://www.aap.org/pressroom/AutismMgmt.pdf
AAP press release
http://www.aap.org/advocacy/releases/oct07autism.htm
Thanks, Regan—the 2nd report will get its own post – lots of good reading sitting on my desk right now!
hi longhaul, I really hope the diagnosis makes things smoother for your son. My husband had ADHD, severe at times, and grew up in the 60s in Catholics schools for some of it—-not easy. He did think that knowing he has ADHD helped in terms of his own self-understanding, which does not mean dealing with what people used to call “minimal brain damage” was easy.
@athina, talk about frustrating—–that “he’ll just grow out of it” phrase and also the “wait and see” when Charlie just seemed to be struggling and not doing things in ways that other children were not—–that was a hard period. Charlie had no obvious medical issues; he did walk late (and roll over, sit up, stand, never crawled) but these were not thought to be signs of anything but “a minor gross motor delay.”
Well, you know what I think about the labels. But I think that in a sense you parents are lucky; you have a pretty good idea, early on, that this is permanent. It’s a much better to be in that position than it is to be dealing with a family member’s mental illness that may or may not go away, and it’s unlikely most people will assure you that these things usually resolve themselves.
It’s helpful to know about permanence in practical terms, too. It never occurred to me to move my ex toward applying for disability, because it never occurred to me that he’d be permanently disabled. I was surprised when his psychiatrist gave him the papers to file, and figured he’d be on disability for a few months, then go back to work. He’s coming up on three years now, and there’s no expectation he’ll be “fine”. If I’d known, we’d have filed at least a year earlier, and a lot of the misery of “trying to solve the problem” would’ve been avoided.
New Jersey Assembly Speaker Roberts is asking the state’s Department of Health and Senior Services to use the AAP’s guidelines in screening for autism.