Reply to Latest CDC number 1 in 36 children diagnosed with autism

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[quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous][quote=Anonymous]I started working with children with autism when it was 1:750.

Some anecdotal observations:

-The effective treatments and diagnostic tools available now to then really aren’t much different despite the abundance of research.

-Parents will try most anything to help their child whether there is evidence to support it or not. I’ve seen it all from literal bowls full of vitamins, not allowing cell phones or plastics in the home, light table therapy, listening to what sounds like static to me, special diets, aromatherapy, feeding the kid coconut water from green coconuts (as parent almost chops their finger off trying to open it), acupuncture, massage, skin brushing, you name it I’ve probably heard of someone trying  it.

The biggest differences from then to now:

-More funding sources

-Less stigma around the diagnosis

-Parents depend more on insurance and school than they did before to secure services.

-Asperger’s is now part of autism diagnosis (this used to be a huge distinction).

-Parents are less likely to form close social circles with other families with SN- I think this is likely because they don’t depend on each other as much to share ideas.

-It used to be that parents would hire a consultant and hire and train their own staff, run team meetings, create materials, etc. I don’t see that much anymore, parents are more hands off though not always the case. I’m obviously generalizing regarding what I see most.

What I’ve seen be most effective:

-Early diagnosis and treatment, the younger the better. As early as 9 months would be feasible for me.

-Some states allow for a pre-diagnosis given by pediatrician to obtain EI services more quickly. This is done at first signs or suspicions of developmental delay. Caregivers are then given time to put together appointments for more comprehensive diagnosis while comprehensive early intervention home-based services are started. In those places I was more likely to see children starting services in the 12-24 month range. In states requiring full diagnostic evaluations it’s closer to age 3-4.

-I’ve noticed I make more effective progress the younger I start. While getting started is often slower at that age, “catch up” to NT peers is closer by the time school starts. I can also typically tell when I work with an older child if they had EI services so unfortunately I don’t think that making up for this lost time is that easy/ it doesn’t always equate in the long run.

-I think parents also benefit from earlier intervention as the struggle of a constantly screaming 16 month old and how to deal with them can take a big toll on families. Parent training is /should be part of the EI process and many parents are grateful for it.

My 2 cents of what is effective:

-A comprehensive early intervention plan/team including ABA, speech, OT, PT, developmental pediatrician, parent training, nutritionist, educational advocate, case manager.

-Focus first on language, attending, imitation skills, and parent training.

-Get the junk (chemicals, sugar, etc) out of the diet

-Limit or eliminate all electronics until they are older because it inhibits the ability to focus on other skills that are lacking. Anything very distracting likely isn’t going to be beneficial in promoting skill acquisition, language, attending, or independence. (I’ve had to ban spoons from work time because they were distracting to a spoon-obsessed child so it’s not an I hate screens argument, it can literally be anything distracting).

What I think parents should push for:
-Pre-diagnosis/ more focus on comprehensive early intervention including home based birth to 3, with programs that move easily to home and school based at age 3.

What causes it? My guess is genetic predisposition and environmental factors. I doubt I’ll get a real definitive answer in my lifetime. I try to focus on how to help now regardless of the why but respect the researchers trying to pinpoint more specific causes.[/quote]

Thank you for the one helpful reply on this thread. My son has ASD similar to the former Asperger's. He's turning 4 and we're just getting the ball rolling on speech, OT, and ABA. Dad and I are both in the medical field (adults) and I feel awful that we missed so many signs until now. Do you have any specific observations for kids with Asperger's? [/quote]

Age 4 is actually very early for an autism diagnosis.  The most common age of diagnosis for level 1 autism is age 12.
[/quote]

This is very much dependent on the area and resources. What was once considered Aspergers typically has a later diagnosis but those falling more into the level 2-3 areas of autism are typically going to exhibit signs at an early age whether they are diagnosed at that age or not. [/quote]

I guess we were lucky then. My DD who is level 1 was diagnosed at 2.5. She had a slight language delay and challenges with pragmatics. Very few sensory issues or at least not really apparent. Some restricted interests but you can move her on. We were a bit surprised when she was diagnosed—but don’t really doubt it now. I think they are getting better at diagnosing sooner (and also think there’s likely something going on environmentally too). [/quote]

2.5 is a great age to get started! Glad you found a diagnostician that was able to recognize the more subtle early signs- this isn’t always easy to do. While I’m not a diagnostician I’ve found time and experience with different children has given me the ability to recognize signs younger and younger. Most tests are hard to administer if a child lacks basic skills required to conduct a test. Kind of a catch 22. You can’t really “test” a 9 month old or a constantly screaming 18 month old- you have to really understand and observe behavior and what is or isn’t typical at that age. Sometimes you just have to say well there could be a delay so doing something is better than doing nothing.

Kind of a vent but I could probably observe a child at 9-12 months and tell you if there are delays but I’m not a diagnostician so I could never say that to a parent. I wish there were an easier path to becoming a diagnostician for those that have other experience in the field of autism. Something like if you have 20 years of experience in ABA, SLP, OT, PT, Special education or educational advocacy and have served individuals with developmental disabilities ages birth-3 for at least 10 of those years then you can complete x,y, z training to provide a pre-diagnosis of PDD-NOS to get EI services started. Something that doesn’t require another 2-4 years of grad school in another field would be nice because that’s not realistic for experienced professionals in secure lines of work. I don’t want to have to change careers mid-life to learn to do something I already possess the skills to do. There’s no motivation for experienced professionals to expand the diagnostician pool despite the fact that those are often the people making first contact with these children and families.

I can’t tell you how many times I’ve been in a home serving an older sibling and a parent asks me if their younger child might have autism as well. I might be screaming to myself OMG obviously, but have to use my most professional voice and say well I’m not a diagnostician but you might want to have him seen by a developmental pediatrician if you have concerns. It feels like such a generic and frustrating answer to give and I know the parents think that as well. Some have flat out told me that. What would happen if I could instead say well can I take an hour and play with them? Then at the end I hand them a pre-diagnosis and they can get services started immediately while awaiting more formal diagnostic testing. Not saying IRL it would go that smoothly (consent forms, legalities, etc) but I think there’s a missed opportunity here and with the strain on current diagnostic resources it could really help a lot of children to receive earlier diagnoses. [/quote]

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