I come to this forum for comfort after hearing "there's nothing we can do" or trying to comfort a child who wants nothing to do with you because he can't connect. Not to read statements from people who question my child's very existence. Let's get beyond that and let's take ASD seriously. My child is high functioning. What does this mean? It means he is intelligent enough to know he is different and to understand (sometimes) when he is isolated from peers. It means people expect him to act his age- but he can't. It means he "looks fine" but still may never be able to live outside an assisted living facility. it means he has been hospitalized twice already for issues that even the doctor can't explain and he is only 8. It means that unless things change, even with all of these "services" he will miss out on everyday childhood things, like camp, and best friends and being able to go somewhere, anywhere without a chaperone. And it means that strangers feel entitled to tell parents, in front of the child, how they should parent. Always offering advice with no idea what it is like to raise a SN child. And don't get me started on dealing with schools, special diplomas and such.

Sorry to vent. But this caught me after two nights of no sleep because DS can't sleep- even with melatonin. Because ASD kids tend to worry about everything and have trouble shutting down. And did I mention the sensory issues... DS accidentally cutting himself while doing origami but not being able to feel it?

Yes, services are great. It allows DS to go to school and to remain at home instead of in inpatient care. It keeps me from crying every night because I want to make his world better like any other parent, but the deck seems stacked. Services allow us to have periodic moments of "normalcy" like having the entire family go out instead of just going out two at a time. If you don't live it, you haven't a clue. Is this the life people are scamming for?

Anonymous wrote: Also, the rates are soaring in places like Africa.

Is this true? I haven't read up recently on the diagnosis rates in other countries, but would be interested. I think examining autism in other environments can help us see some commonalities and hopefully eventually a cause for the dramatic increase.
Can you cite any sources?

pathologize not anthologize is what I thought I typed

Anonymous wrote:

It's a pretty limited spectrum actually. But schools and professionals who provide services have been incentivized to diagnose autism. So you go looking for it and that's what you find.

The explosion of numbers is not in the low functioning kids. It's all in the high-functioning area. That's why 70 percent of kids who got PDD-NOS today would no longer qualify for an ASD diagnosis.

You want to know who is really pissed about these new numbers? The parents of kids who have low-functioning autism. Because their kids are being left behind as all the emphasis now is on "curing" the high functioning alleged ASD children

Schools want to give our kids more services??? Seriously? What rock do you live under? It's often a battle to get the amount of services a child truly needs in the school system. They are looking to save money. To be honest the only professionals I have encountered who have been desperate to anthologize were OTs. My child has a great OT, but there are OTs that screen at preschools for clients and suddenly half the boys have sensory issues.

I don't believe it. Kids in NJ likely to to the doctor more than kids in Alabama, thus higher a percentage has been diagnosed in NJ.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

It's not an epidemic. It's gross misdiagnosis/overdiagnosis/sloppy diagnosis to get services.

Also, they did not use the DSM 5 -- and that will cut autism dxs by a third.

So you are saying that there are a bunch of kids who are getting services they don't need? That parents are in cahoots with doctors to get their kids services they don't need. Why would they do that?

...so that insurance will cover therapy - that's why. Many therapies for kids on spectrum also help kids with ADHD, Sensory issues, MERLD

My insurance does not give a shit that my kid has autism. We get a certain amount of sessions for OT or ST or PT no matter what the disability. Furthermore, it is nearly impossible to find top notch clinicians near us who take insurance and don't have massive waitlists.

Anonymous wrote:

Anonymous wrote:

It's not an epidemic. It's gross misdiagnosis/overdiagnosis/sloppy diagnosis to get services.

Also, they did not use the DSM 5 -- and that will cut autism dxs by a third.

So you are saying that there are a bunch of kids who are getting services they don't need? That parents are in cahoots with doctors to get their kids services they don't need. Why would they do that?

...so that insurance will cover therapy - that's why. Many therapies for kids on spectrum also help kids with ADHD, Sensory issues, MERLD

It's a pretty limited spectrum actually. But schools and professionals who provide services have been incentivized to diagnose autism. So you go looking for it and that's what you find.

The explosion of numbers is not in the low functioning kids. It's all in the high-functioning area. That's why 70 percent of kids who got PDD-NOS today would no longer qualify for an ASD diagnosis.

You want to know who is really pissed about these new numbers? The parents of kids who have low-functioning autism. Because their kids are being left behind as all the emphasis now is on "curing" the high functioning alleged ASD children

Anonymous wrote:

It's not an epidemic. It's gross misdiagnosis/overdiagnosis/sloppy diagnosis to get services.

Also, they did not use the DSM 5 -- and that will cut autism dxs by a third.

So you are saying that there are a bunch of kids who are getting services they don't need? That parents are in cahoots with doctors to get their kids services they don't need. Why would they do that?

Anonymous wrote:

Oh, and you ask what the future holds? I know many, many, many kids who were labeled autistic -- and now you'd never know they had any delays.

You do know it's a spectrum right? There are low functioning kids too. Also, the rates are soaring in places like Africa where getting services is a dream for many. This is a global issue. Just because you know kids likely from middle to upper middle class or perhaps wealthy backgrounds who are doing fine as adults, doesn't mean there aren't many, many, many kids out there who desperately need services and who even with services many still need lots of support in adulthood.

I question if previous posters have children on the spectrum and if so, what's the secret? After all, you make it sound like getting services is a piece of cake. So why did it take months of sitting on multiple waiting lists for me to get my ASD child the help needed?

Please share your secrets so I can understand why people would over-diagnose to get services that can take up to a year if not longer to get?

Or perhaps for some of us- a diagnosis gives us a clue as to why our children seem locked in a world that they can't get out of and we have no way of reaching them?

Walk in our shoes...

Oh, and you ask what the future holds? I know many, many, many kids who were labeled autistic -- and now you'd never know they had any delays.

It's not an epidemic. It's gross misdiagnosis/overdiagnosis/sloppy diagnosis to get services.

Also, they did not use the DSM 5 -- and that will cut autism dxs by a third.

I don't know but it makes me happy to know that kids who need supports and services are getting them.

Wow. Not looking to have yet another discussion about widening the definition of autism vs. true epidemic. I have read enough on the topic to know that there is some of both, leaning more toward epidemic. The definition in the new DSM may decrease the number of diagnoses, but it isn't going to decrease the number of kids with special needs-whether or not those needs have a label.

I have so much to express as a parent of a child with autism, but right now I am too exhausted to be coherent so all I can say is wow. Just wow. What does the future hold?