Autism; how much do age diagnosed and services received vary by where you live?

Amy - posted on 01/04/2011 ( 2 moms have responded )

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Hi, I just joined yesterday so please forgive me if I break any of the rules while I am getting to know the group. I have lots of "real life" autism mom-friends that live in my area, but this is my first time joining any kind of an online forum related to special-needs parenting. So what just really took me by surprise, reading some of the posts here from other autism parents, is that some of the experiences represented here are SO different from what I have experienced or any in my local circle of around 25 families have experienced that I have heard of. I would be really interested in hearing what state or country you live in, how old your child was when diagnosed, what services you have been offered/received, and how your child has progressed.

My son was diagnosed w/ autism tentatively at his 15 month well-baby check up, and it was confirmed by a developmental pediatrician at 20 months. The oldest I had heard of a child being diagnosed (before joining this forum) was age 4, and pretty much everyone I know w/ a child w/ autism was diagnosed at 2. Is this an anomaly to California, or is this the common age for a child to get diagnosed? Also, have you been offered ABA therapy for your child, and if so for how long (hours per week as well as how many years of ABA)?

Thanks for any responses!
Amy

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Iridescent - posted on 01/05/2011

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From what I hear, it's quite early to be diagnosed but more often done in larger areas. I live in Minnesota. My oldest has been diagnosed with PDD-NOS with ADHD and Depression, but he was on the moderate-severe end of the ASD spectrum. At the age he was diagnosed with the PDD-NOS, they didn't want to "label" him so refused an autism diagnosis despite proof that's what it is. So he's 11 years old and we're starting at a new clinic to get his official diagnosis. Yay, us.

My next one to be diagnosed was just last month. He was taken to an autism clinic that is excellent, and they diagnosed moderate autism the day of his final evaluations. The full report followed, but he was far enough into the spectrum that there was no doubt and they could give us that information without concern of the final results being a few points off on any test. This was done with several tests to confirm it, yet his pediatrician the month prior had said, "he's not autistic, just developmentally delayed and likely has ADHD" without the benefit of using any tests at all.

What was your child's diagnosis based on? Was it a full clinic evaluation, or a doctor's opinion during a 30 minute appointment? This makes me really question if some children are ever given the correct diagnosis and help, or just labeled because the doctors think they're so great they don't need to rely on standards (such as our pediatrician whom is no longer our pediatrician).

In addition to our autistic children, my husband was diagnosed as autistic as a pre-teen (not sure what age exactly, but I think it was 10 or 11), and my doctor told me this summer that I am likely also autistic but have learned to function (I'm 30, and have had a long history of diagnoses that fall under autism vs the autism diagnosis). The problem for both myself and my husband is that we had to learn to adapt on our own, so we really don't function "typically". This appears to be true in a lot of families with multiple children with autism - one or both parents also have it to some extent, and they rely heavily on each other for their weaknesses because they never got any help to cope.

The only therapy we have ever received is through school, and minimal. Speech Therapy fought PECS and refused to set it up for our youngest, but they did it for our oldest. Both have needed Occupational Therapy, but they refused to do any sensory therapy until they had the sensory diagnosis requiring it (they are still not doing it despite the orders now for our youngest). Our youngest needs a 1:1 Para and cannot attend school again until he has it, so they're delaying IEP meetings to avoid allowing him back and that expense as he does not have a disability waiver or insurance to bill for it, so it becomes a school expense. We have never been offered ABA therapy for either of our children. I live in Minnesota. No clinic therapy is available that I am aware of where we live.

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Anaquita - posted on 06/04/2012

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This was posted well over a year ago, but as it only has one response.... I figured why not?

How early a diagnosis is made varies both on where you live, and where the child falls on the spectrum. The further down they are (less functioning) the more obvious the signs, and thus an earlier diagnosis. Some kids also have late onset autism. The higher functioning (HFA, Aspergers, and many cases of PDD-NOS) the less obvious the symptoms can be. Especially earlier on, and so kids get a later diagnosis. Partially as it can look like a delay, which is something that could be grown out of. And so doctors will want to wait and see. (while hopefully referring the child to early intervention services so if it's a delay they can catch up, and if not they still get the early help needed) My son has Aspergers, and while we had an initial screening for it when he was 5, he wasn't given a referral until last year at age 7, for a proper check by a pediatric neurologist. Most of the signs and symptoms really came out, and became more obvious once in school, around kids his own age.

I hear ABA is good for many kids. My son's not in it, because the insurance won't pay for it, and I can't afford it. Thankfully my son isn't in great need of it. It would have been helpful, sure. But for us not a necessity. (Each child is different after all) The insurance is however, paying for his weekly 1hr social behavioral therapy, which is helping out tremendously. He's in a group with 3 other kids his age, with similar social behavioral deficits. And through the school in the mornings he works with a para-educator to help him in academic areas he has issues with. (Comfortability with math so he doesn't have anxiety over tests. He can do the math, but bring in a timed test and he freaks. And writing. He can read exceedingly well but has a disconnect with his writing. Something I've been told is common with Asperger kids, and some social help) And a second para-educator once a week for a bit with more help with social issues. Along with a once a month lunch buddy group with fellow kids in his grade with similar issues with making friends, etc. Where I live, if a child has a diagnosis, the school actually receives funding to be able to pay the para-educators to help kids in need. But then I'm in WA state. (Western WA, to be more specific.) And each state, and even school districts are different. Some I hear are far better, and more effective, than others.

And on advice of a doctor, though I have to pay for it, my son is in taekwondo. It helps with his coordination, and balance. Along with focusing on things other than his interests, and so forth. So in a way it's a form of occupational therapy......... only for us, cheaper than the clinic that provides it, so I can actually afford it.

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