Been through the autism DX process? Help. (xposted)

[AimeeM]

DS3's speech therapist had a gentle discussion with me today during Marco's session.

 

Initially she agreed with me that we should wait to see how things went, because many of his behaviors, presentations, and "problems" could also be indicative of *just* an auditory processing and speech problem. 

As time has progressed, however, she is (gently) in favor of having him tested for autism. She said that she would like him tested in a medical setting, not an educational one, because that would enable him to receive services that aren't accessible to us right now. Currently, since our insurance doesn't cover the therapies, we're paying out of pocket at about $80 per speech session, and she would really like to double his sessions (she also uses a therapy technique called RDI with Marco, and he's responding to it well). If he had the sessions at the frequency she would prefer, however, that would put our out of pocket cost at almost 2K monthly. 

 

I'm just not sure. The doctors wanted to send both of my oldest children for testing (autism suspicion) at around this age, too - and now it's very clear that they aren't autistic on any level (both were speech delayed, but aren't now, and both are dyslexic... but no autism), so we're glad we held off until later. I'm concerned that this will be similar.

 

With that said, The Marvelous Flying Marco is unlike either of our older children, too, so there's that to consider. His therapist noted his "rote behaviors", his "hyperlexia", and his number obsession, as well as his seeming inability (or refusal) to make eye contact (he generally looks to the side, or at a person's shoulder when they're talking). It appears he doesn't know his name, either. She noted that his "behaviors" were sensory related, not "bad behavior" related, when she noted that it's obvious there are rules and boundaries in the house, that he knows and understands on some level, because the ways in which she's seen him hurt himself (or almost hurt himself) are generally related to fearlessness, anxiety/tantrums, and hyperactivity, not defiance. He also appears to live on 3-4 hours sleep. 

 

I'm confused. I'm worried. This is the same kid who makes jaws drop regarding his intellectual abilities. He is also, however, the same kid that makes jaws drop and hearts stop with his "flying" antics. 

 

If you've been through the process, when? At what age? What was the process like? I'm supposed to call his pediatrician (who has brought this up a couple times in the past) to move forward with it. 

[Kathryn]

Am I remembering correctly that you're in upstate SC? My son was diagnosed at Greenville Hospital Developmental-Behavioral Pediatrics. The wait for initial testing appointment was about a year, so I urge you to get on the waiting list even if you're unsure about it right now. If he is diagnosed, he should qualify for a Medicaid program which will cover his therapies at no charge to you (it goes by his income/assets, not yours).

[Kathryn]

To answer your questions, DS was diagnosed at the beginning of 2011 right after turning five. He was in he waiting list for almost a year. It was a series of three appointments, each a month apart. First, they sent us a ton of paperwork to fill out and give to teachers/therapists to fill out. The initial visit was to meet us and him, discuss concerns/issues, and what testing would be done. Second visit was actual testing. Third visit was discussing results and giving information/resources.

[MrsMommy]

My younger son went through the process when he was about 2 1/2. First we had therapists come into our home to observe him...speech. occupational, and one other, maybe behavioral? We then went to a neurological pediatrician for the final consultation. In her opinion, there was no doubt our son was on the spectrum. Her bedside manner was awful, and I bristled at her diagnosis at the time, but looking back, she was right.

 

Every child on the spectrum is different. At the time, my son would have been classified as mentally retarded. Now, he's obviously gifted in some areas, but struggles in others. The day he received his diagnosis was the worst day of my life, but it was also the beginning of us finding help for him.

 

That's the very short story. If you have other questions, I'd be happy to try to answer them.

[monstermama]

:grouphug:  :grouphug:  :grouphug:

 

Following along, because we might be following in your footsteps soon.

[Carrie12345]

We started around age 3. The whole process took us about 8-10 months or so, taking other people's cancelled spots.  It can be really hard (well, long) to coordinate all the different in-demand specialists.

[gardenmom5]

she's right - a medical diagnosis will require the school districts to give services.  (they tend to try to avoid them.)

 

there are many facets.  we did ours in three days over two weeks.  (after months of waiting to get in. one of his therapists finally called.)  they were long days.

he also refused to cooperate with certain specialists.

 

then - we did it all over again for the school district (the psychologist was great.  the SLP  .  big huge eyeroll.)  He has a number of services through them.

[AimeeM]

Actually, she said that we want the medical DX is so that I can obtain private services, because we do not want to go through the local schools for services. For example, right now he could receive (free) ST through the schools, because he has had all evals (cognitive, OT evals, ST evals, etc) and qualifies, but we prefer to go privately. Apparently our state has a specific type of medicaid that isn't income based (iow, all children qualify if they have a medical DX that is long-term/life-long) that would cover everything related to that DX, privately. 

[Ottakee]

We don't have autism but other special needs.  I would encourage you to get on the waiting list for the evaluation.  A diagnosis can open up a lot of doors to services, therapy, etc.

[prairiewindmomma]

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[wendyroo]

We started the process when Peter was 3.5 on the advice of our pediatrician.  We called the only mental health facility in town that accepted our insurance and their policy was the patient had to be seen by one of their therapists for 6 sessions before being recommended for evaluation.  We already had one therapist, one pediatrician and one pediatric behavioral specialist (specializing in autism) saying Peter needed the evaluation, but still we had to go through the mental health facility's therapist gatekeeper...who's next available appointment was 3 months down the road.  By the time Peter had seen their therapist the requisite 6 times, he was just about to turn 4.

 

Right around his 4th birthday the therapist officially recommended Peter be evaluated.  The evaluation center's first available appointment was 9 months later.  We asked them to call us with cancellations, but they said the cancellation waiting list was always a mile long so there was little chance we would get in early.  They were right.

 

Peter got his evaluation when he was 4 years and 9 months old.  It took two half day session during which I had to find child care for the other kids.  At the end of the evaluation the psychiatrist proclaimed him officially diagnosed with ASD and anxiety disorder, recommended we find a doctor to prescribe anti-anxiety meds and sent us on our way with no idea how to proceed.

 

The HUGE, multi-location mental health facility had very few doctors and therapists who worked with young children.  We needed to see a psychiatrist to get the anti-anxiety meds, but they only had one that accepted our widely-known insurance and she was a 45 minute drive away and did not have any openings for 6 more months.  Our pediatrician took pity on us and said she would prescribe the meds in the interim even though she was not entirely comfortable doing so.  It was slightly easier getting in to see a therapist...only 30 minutes away (in the opposite direction as the psychiatrist) and only a 3 month wait.

 

All told, we started the process when Peter had just turned 3.5 years old, he was evaluated at 4.75, he started therapy and meds right around his 5th birthday and he saw "his" psychiatrist for the first time at 5.25.

 

Honestly, the only real good that has come from the evaluation and diagnoses are getting him on the meds.  It takes a HUGE dose (CVS always has to call the psychiatrist to ensure that she real meant to prescribe that much), but we are seeing great improvements in his anxiety.  Other than that, the diagnoses haven't "bought" us anything.  

 

Our insurance covers some of the therapy costs, but no more or less than if we had just walked in off the street and made the appointments without a diagnosis.  There are no social skills classes or autism clinics or specialized therapies available (and we have searched high and low and asked all the professionals), just a weekly generic therapy session that doesn't really seem to be doing any good.  We have paid out of pocket for speech therapy from the time Peter was 18 months until the center "graduated" him at 5.75 simply because his "social communication" issues were beyond the scope of their services.  I would be happy to continue to pay for speech therapy if there was anyone available who had any idea how to help him.

 

That seems to be the story of our life: we have given up on the pipe dream of insurance actually offsetting many of the costs associated with Peter's mental illnesses, but even fully accepting that we will have to pay thousands a month out of pocket we still can't find resources to adequately help him or us.

 

Wendy

[luuknam]

she's right - a medical diagnosis will require the school districts to give services.

 

That's (sadly) not true, fwiw. That said, not many schools have the guts to refuse services to a kid with a medical autism diagnosis, but they do exist (in which case you'd have to jump through the hoops to get an educational autism diagnosis).

 

Anyway, as far as the original question is concerned, we got the educational autism diagnosis through the school district when C was 4. These days, his pediatrician will happily write an autism diagnosis on any paperwork that requires it. We've never been to a medical autism specialist though. I didn't see the point. Early intervention and then the school district provided services, so why bother with anything else?* C has a family history of ASDs, so it's not like we didn't know what was going on with him.

 

*Yes, I know that it's possible to get money from social security disability stuff, BUT, I am too disorganized to be able to deal with all the paperwork that would require.