ASD evaluation without selling a kidney

[Anonymous]

Two years ago we did a comprehensive neuropsych and my DC was diagnosed with severe ADHD. It cost a lot of money for our family (around $4000). Given certain behaviors and challenges I would now like to get DC screened for ASD. The neuropsychs I reached out to say they will only screen him if they do another full neuropsych for $5000. The original practitioner says they aren’t specialized in ASD and doesn’t seem interested in screening DC. Any advice on how to get my DC evaluated without having to spend thousands of dollars again or waiting for years to get off a waitlist? DC is 11 years old. TIA!

[Anonymous]

Gmu has a program. Lower cost but long waitlist. I’m sorry op

[Anonymous]

Penn state and they take insurance

[Anonymous]

Children’s Hospital and Inova take insurance but have a very long wait list. Look for hospital clinics, they usually take insurance.

We waited over a year to be seen at Children and we paid about $1K out of pocket.

[Anonymous]

You can do it with insurance or you could do an educational eval through the school district. It would give you an educational dx rather than a medical one.

But honest question, does it even matter? What do you hope to unlock by having the diagnosis?

[Anonymous]

Any of the children’s hospitals - Children’s, KKI, Inova. Get your name on the lists. A while back people were saying that Mt Washington was faster: https://www.mwph.org/health-services/behavioral-health/autism-spectrum-center.

You should definitely request that the school test as well. School psychologists are in fact trained to assess for autism and if you think it wasn’t correct, you have the right to an independent evaluation paid for by the school district.

There’s absolutely no need to spend money you don’t have on this.

[Anonymous]

we gave up and paid $5,500. Insurance rejected the neuropsych multiple times. One thing you may want to consider is what you will do with the diagnosis. We had the original adhd diagnosis from early childhood and teen requested the asd evaluation. It has helped us understand him better but there is really not much difference in treatment. He gets exhausted from social situations so we wanted the test for college accommodations (single room). if you are looking to get accommodations of some sort plan accordingly. For example, college's typically want the test to be within 2 years while accommodations for testing (SAT etc) are different.

[Anonymous]

Wouldn't he have been screened for autism at the first evaluation????

[Anonymous]

Anonymous wrote:Wouldn't he have been screened for autism at the first evaluation????

Not necessarily. chesapeake did not do that for us.

[Anonymous]

I knew DS had autism since he was little (no one believed me, initially). We paid a reasonable sum, in the hundreds, when he was diagnosed with ADHD by a developmental pediatrician at 6. His MCPS elementary school gave him an IEP due to extremely inattentive behaviors, inability to complete assignments on time, and write: he had group speech, a scribe/aide for writing, pull-outs to finish his work, preferential seating, repeated directions, etc. The works.

We paid Stixrud prices (thousands) for a full neuro when he was 10, because he needed updated data to qualify for MCPS' gifted and learning disabled program. ADHD was confirmed but we were told it would cost extra to explore autism. We chose not to, because he was getting everything he needed with the IEP, predicated on the ADHD. He got into the special program, which turned out great for him.

Only when he was 17 did we return to Stixrud to specifically ask for autism testing (and a reconfirmation of the ADHD), so we could request services and accommodations from colleges. His chosen college's Disability Office assigned him a single room with private bath on the strength of the autism diagnosis.

All this to say, OP, that:

A. You will need to budget money and time for repeated evaluations over the course of his childhood, because most institutions/programs require paperwork that is 4 years old or less. There are waitlists everywhere for testing and some of them can be very long. Make sure to schedule in advance.

B. You can be strategic in your diagnosis targeting, depending how you plan on using that label.

[Anonymous]

Can I just say it is so crazy that we have to pay thousands for evaluations when they won't even test for autism unless you go to someone specialized in autism and/or pay extra? What is the role of the evaluator if the family has to come in already knowing what diagnosis they need? Is it really that difficult for a doctoral level professional who evaluates people for a living to administer the ADOS?

[Anonymous]

Anonymous wrote:Can I just say it is so crazy that we have to pay thousands for evaluations when they won't even test for autism unless you go to someone specialized in autism and/or pay extra? What is the role of the evaluator if the family has to come in already knowing what diagnosis they need? Is it really that difficult for a doctoral level professional who evaluates people for a living to administer the ADOS?

NP here. This wasn't my dc's experience. We went for a full neuropysch with ados when they got dx-I did not know dc had asd, but it was suspected as were other things. The testing covered all sorts of things. Insurance (fep blue) covered it.

OP, I would go ahead and get on the lists at places that take insurance. Ask to be placed also on the 'cancellation' list, where they call if there is a cancellation. I'm not local to this board so don't have any names to suggest.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Wouldn't he have been screened for autism at the first evaluation????

Not necessarily. chesapeake did not do that for us.

Geez. And you paid $4000 for that? This is why I constantly advocate against private “neuropsychs” on here. Such a huge amount of money many people cannot afford, or would be put to much better use on therapy or tutoring.

[Anonymous]

Anonymous wrote:I knew DS had autism since he was little (no one believed me, initially). We paid a reasonable sum, in the hundreds, when he was diagnosed with ADHD by a developmental pediatrician at 6. His MCPS elementary school gave him an IEP due to extremely inattentive behaviors, inability to complete assignments on time, and write: he had group speech, a scribe/aide for writing, pull-outs to finish his work, preferential seating, repeated directions, etc. The works.

We paid Stixrud prices (thousands) for a full neuro when he was 10, because he needed updated data to qualify for MCPS' gifted and learning disabled program. ADHD was confirmed but we were told it would cost extra to explore autism. We chose not to, because he was getting everything he needed with the IEP, predicated on the ADHD. He got into the special program, which turned out great for him.

Only when he was 17 did we return to Stixrud to specifically ask for autism testing (and a reconfirmation of the ADHD), so we could request services and accommodations from colleges. His chosen college's Disability Office assigned him a single room with private bath on the strength of the autism diagnosis.

All this to say, OP, that:

A. You will need to budget money and time for repeated evaluations over the course of his childhood, because most institutions/programs require paperwork that is 4 years old or less. There are waitlists everywhere for testing and some of them can be very long. Make sure to schedule in advance.

B. You can be strategic in your diagnosis targeting, depending how you plan on using that label.

This is not necessary. You can schedule repeated testing at places like Children’s. I was encouraged to schedule serial testing years in advance. You don’t need to pay that much for it. Although I’m sure Stixrud loves your viewpoint!

[Anonymous]

A stand-alone ADOS shouldn’t cost 5k.