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Old 05-25-12, 09:03 AM
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Autism Often Not Diagnosed Until Age 5 or Older: U.S. Report (Article)

THURSDAY, May 24 (HealthDay News) -- Even though autism symptoms typically emerge before age 3, most children with autism are diagnosed when they're 5 or older, a new snapshot of autism in America shows.

More than half of U.S. children with an autism spectrum disorder are taking at least one psychotropic medicine -- including stimulants, anti-anxiety medications, antidepressants, sleep aids, seizure medications or antipsychotics -- even though there are no drugs that have clearly been shown to impact the core symptoms of the disorder.

The findings are from a nationally representative survey of more than 4,000 parents or guardians of children with special needs aged 6 to 17, including about 1,400 who had an autism spectrum disorder. The report was compiled by researchers from the U.S National Institute of Mental Health in conjunction with the U.S. Centers for Disease Control and Prevention.

"This is a snapshot of what the nation looks like. American families can compare their experience to what others have found," said study co-author Lisa Colpe, chief of the office of clinical and population epidemiology research at the U.S. National Institute of Mental Health.

Among the other key findings:

About 19 percent of kids were diagnosed with an autism spectrum disorder at age 2 or younger; 17 percent were diagnosed at age 3; 13 percent were age 4; 11.5 percent were age 5; and nearly 40 percent were 6 or older when they were diagnosed.
Children were identified by a range of health care professionals, including pediatricians, family physicians, nurse practitioners, psychologists, developmental psychologists, neurologists and multidisciplinary teams.
Nine of 10 school-aged children with an autism spectrum disorder use at least one service to meet their developmental needs, while just over half of the kids use three or more services.
The most common service is social skills training, followed by speech or language therapy. Others include behavioral interventions and occupational therapy.
Geraldine Dawson, chief science officer for Autism Speaks, said findings show the continued need to work toward identifying children earlier.

"Research tells us that children who start intervention earlier do better in the long run. This report found that the majority of children were 5 years or older when they were first identified. We can reliably diagnose autism by 24 months, so professionals need to do a better job, including screening all children at 18 and 24 months," Dawson said.

Only about 40 percent of school-aged children with an autism spectrum disorder receive behavioral intervention, even though research has shown such strategies can "significantly improve outcomes," she added.

Lack of insurance coverage and too few trained providers with expertise in behavioral interventions are reasons why some children aren't getting the services, Dawson noted. "It is critical that we address the barriers that are preventing children from receiving early intervention. Early intervention will result in better outcomes for children and provide substantial cost savings in the long run," Dawson said.

Autism is a neurodevelopmental disorder characterized by problems with social interaction, communication and restricted interests and behaviors. That includes repetitive behaviors, such as arm-flapping or head-banging; having an obsessive interest in one topic; having a need to stick to a specific ritual or routine; and experiencing distress or agitation when that routine gets disrupted.

About one in 88 U.S. children has the disorder, according to the CDC.

Children with autism can also have co-existing conditions, such as anxiety, seizures, depression or attention-deficit/hyperactivity disorder (ADHD). Experts say it's not always easy for parents and doctors to know whether symptoms are autism-related or a co-existing condition, but many will try various drugs to alleviate the symptoms.

"The findings with respect to psychotropic medication use is in line with previous findings," Dawson said. "Children with autism often have co-occurring conditions, such as ADHD and anxiety, which are often helped with medication."

Because some of the drugs to treat those conditions can be powerful, Colpe said it was a good sign that so many children (upwards of 90 percent) were also receiving some other sort of treatment, indicating that they are being monitored by a physician.

"They are getting a multi-mode treatment," Colpe said.



Read more: http://www.philly.com/philly/health/...#ixzz1vt0QruBi
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Old 05-25-12, 09:16 AM
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Re: Autism Often Not Diagnosed Until Age 5 or Older: U.S. Report (Article)

Thank you for sharing this. It was also our experience. My daughter and I
didn't figure out that my youngest granddaughter has Autism until she was
in Pre-K at age 5. Everyone kept telling us that she was fine, lots of kids
don't talk until they're 3 or 4. We knew nothing about Autism before that.

Insurance wasn't the problem for us, it was finding a doctor who could
diagnose my granddaughter. We had one appointment with one doctor,
who then moved away without finishing the diagnosis. We had to drive
three hours away to a teaching hospital to get her diagnosed by a child
development specialist. Long car trips with Autistic children are NOT fun.

Not long after getting the diagnosis, we found a psychiatrist who was at
least willing to treat her. He isn't treating the Autism, he is treating the
symptoms, which includes horrible Anxiety and Depression, and possible
cormorbid ADHD.
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Old 05-25-12, 01:34 PM
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Re: Autism Often Not Diagnosed Until Age 5 or Older: U.S. Report (Article)

It is so frustrating when medical professionals don't try to listen, Stay Strong!
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Old 05-25-12, 02:54 PM
Dizfriz Dizfriz is offline
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Re: Autism Often Not Diagnosed Until Age 5 or Older: U.S. Report (Article)

One of the major problems is that it usually takes special training to recognize autistic spectrum especially the less severe cases. Most professionals, even those who specialize in working with children, have difficulty making even a good screening.

Very often the symptoms for autistic spectrum are subtle and hard to pick out. It is tough. I have seen the best trained with ECI agencies (Early Childhood Intervention) but most parents and many professionals are not aware of these. Many shut off services around age 3 or 4 and there is not much available after this age.

It is a tough situation and I do not know of too many answers in this age of reduced budgets.


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Old 05-25-12, 03:21 PM
zette93 zette93 is offline
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Re: Autism Often Not Diagnosed Until Age 5 or Older: U.S. Report (Article)

I read this article elsewhere and was irritated by it. It said straight out that the majority of those cases diagnosed after age 5 were milder cases [most likely HFA or Aspergers], then goes on to say more screening by pediatricians is needed at age 2. While I'm sure there are still some clueless pediatricians out there who are missing non-verbal children at 3 and 4, the majority of these kids are verbal and could not have been diagnosed at 2.

My son was one of them. At 32 months (just over 2.5), we contacted Early Intervention because of a minor speech delay (he had two word combos, but wasn't progressing to phrases and sentences.) His speech delay wasn't enough to qualify for free therapy, but he showed some repetitive behaviors during the screening and was referred to the EI psychologist, who performed the ADOS (the gold standard for diagnosing autism). He did not score in the autistic range, and we were told he was "just strong willed."

In my opinion, there really weren't any red flags until age 4, when he went into a larger preschool classroom (24 instead of 12) and was asked to try and write letters, which he did not want to do. I think the emphasis needs to be on educating preschools on what to look for, and screening questionaires about social interaction and repetitive behaviors to be given by the pediatrician at ages 3,4, and 5.

We could've maybe gotten an Aspergers diagnosis at age 4.5, if our insurance had covered the psychologist our pediatrician recommended, and the guy who was in-network wasn't such an idiot. As it was we had a six month delay from when the preschool alerted us to when he got his dx, which isn't too bad compared to many. Then another year to dx ADHD because his preschool teacher filled out the ADHD questionaire very conservatively. (I only wish we could've used that year we delayed kindergarten to get his meds figured out!)

I don't think there would've been much therapy available for him (other than speech therapy, which we did pay for out of pocket for six months) if he had been diagnosed earlier. It was very hard to find a social skills class at age 5, and we weren't seeing problematic behavior at home that would warrant ABA. Maybe DIR/Floortime with a peer to help with play skills would've been helpful.
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I highly recommend:
Lost at School and The Explosive Child by Ross W. Greene
http://www.livesinthebalance.org/walking-tour-parents -- video
Essential Ideas for Parents by Russell Barkley (video on youtube)

Parenting Children with ADHD by Vincent J. Monastra
Smart but Scattered by Peg Dawson
Parenting Your Asperger Child by Alan Sohn
Wrightslaw: From Emotions to Advocacy by Peter Wright
Overcoming Dyslexia by Sally Shaywitz
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Old 05-25-12, 04:08 PM
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Re: Autism Often Not Diagnosed Until Age 5 or Older: U.S. Report (Article)

Here is an article from the AAP in Pediatrics, Identification and Evaluation of Children With Autism Spectrum Disorders, that I came across this week. I think it was linked from something one of the author's wrote about too many Pediatricians not doing the AAP recommended screenings. Those are probably the same peds who "there, there" the parents who do notice that something is "off" --usually between 17mo and 2.5 years.

Our state doesn't have universal preschool so the first "opportunity" for ds to identified through the school system was at 5.5. They weren't interested in seeing him as anything but a behavior problem, so ds wasn't diagnosed with anything until we managed to get him into a psychiatrist at 6.5, then a developmental ped at nearly 7yo.
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