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Been through the autism DX process? Help. (X-posted)


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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. 

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If you do that, will your insurance all kick in for OT?  That would help with the sensory.  

 

That's great that you're getting RDI in addition to speech!  You're doing the right things.  Even though it's hard, it's usually the right move to listen to people who are there, on the ground, working with him and seeing him.  

 

:grouphug: 

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Actually, our insurance covered OT to a point, but we discontinued it. OT was actually causing more problems than it helped - it only gave him new ideas (like wrapping things around himself, like the OT had - yikes!). 

 

Our ST is fantastic. Super fantastic. We love her.

If you do that, will your insurance all kick in for OT?  That would help with the sensory.  

 

That's great that you're getting RDI in addition to speech!  You're doing the right things.  Even though it's hard, it's usually the right move to listen to people who are there, on the ground, working with him and seeing him.  

 

:grouphug: 

 

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Yeah, there are a number of red flags. They could just be ADHD + giftedness + SPD, but then again, they could be Asperger's/HFA.

 

I would get on the waiting list for a developmental pediatrician. If he is on the spectrum, the earlier the intervention, the better the long-term outcome.

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We went through the process just this past fall, when our dd was nearly 10. I wish it had been earlier, but even though we were seeking help no one thought "autism."

 

At first we were on the waiting list of a major hospital near us, but as the appointment drew near and we got concrete information about the visit, it didn't sound like a good fit. I found out that the whole process would take only one hour, with a yes-or-no diagnosis afterward. An older man was doing the testing, and dd tends to shut down around older men. I wanted the information we got to be as complete and accurate as possible, so I started scrambling, called private neuropsych practices within several hours' drive, and found a better fit for dd. The initial visit lasted two hours, we has a basic "yes" at the end of that time, and then there were several more visits to get a more complete picture.

 

You might want to check out the thread in the Special Needs forum about the value of an aspergers diagnosis. My own experience is that the right diagnosis is enormously valuable, and trying to cope without it is not productive.

 

If the concern is a false positive result, I don't know what the chances of that would be. We did get several diagnoses along the way which were superseded by the ASD diagnosis. They did let us start figuring out medications, and we already had some notion of what was and wasn't helpful when we got the ASD label. So the earlier misdiagnoses, while not allowing us to start therapies like ABA which would have been helpful, were not entirely useless.

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We went with my younger son two weeks before he turned four.  

 

The people were extremely nice and they were good with him.  

 

At the time we had to drive into a nearby city.  We went the night before and stayed at a hotel to be ready for an 8:30 appointment.

 

Ours was a 4-hour process.  We spend about 45 minutes out of 3 hours, going through 3 separate 45-minute sessions.  One with a doctor, one with a speech therapist, one where he was with two people who were some kind of specialist with autism.  We had a parent interview.  Then those people talk to each other, for 45 minutes I guess, then we got the diagnosis.  

 

It was pretty intense but I left with a good feeling, that they were competent people and saw an accurate representation of my son.  The speech therapist who did the parent interview was very nice, and the doctor was very nice.  We watched one part through a glass window and that was for my son to play with 2 women.  They had some good toys for him and were able to get his attention and stuff (not so easy to do with him at the time!).  

 

Truthfully I was seeking a diagnosis for him by that time (this time was many months after the first visit to the pediatrician when I was asking for a referral -- at that time I still had many doubts and wondered if I should even bring it up).  I needed to get help and guidance, and I was ready.  I "could have" started the process earlier but I was not ready.  

 

There is another option now in my town, so that it does not take so long to get an appointment.  They do some things and they film it and the video is watched by people at the same place where I took my son.  And/or they do it with Skype.  

It is not so easy to get a diagnosis here.  I am in a small town and it is not something where you can just have your pick of options.  That is just the situation for our local area.  We are in a fairly rural part of our state.  

 

But overall my process was:  bring it up to the pediatrician.  She agreed and wrote the referral the same day.  She had some paperwork to do for the referral b/c the place we went requires background info before they will even schedule an appointment.  

 

Then we got an appointment.

 

Then I filled out a bunch of paperwork and I had a phone intake interview.  

 

They determine what tests they will run and with who, based on the paperwork and the phone intake interview.  This is b/c some kids are at different language levels (etc) and so they cannot go by age.  My son had testing that was "out of age level" but was what was needed for him.  He had things meant for a younger child.  I think that is pretty common though.  Other kids will need testing at a higher age level, for certain areas.  

 

But overall for me ---- in the gap between the "getting the referral/making the appointment" time, I read more, and I also viewed this thing that is a series of videos that shows behavior of children with autism and without autism.  Between those two things, I really already knew before I heard it officially.  

 

I do not think that is the case for everyone -- that is just how it was for me personally.  

 

My son has many things that are very obvious.  He is really not a child where it is more complicated to tease out.  It used to seem like that -- but as I found out more about it (and for me, especially watching the videos) it is obvious.  

 

Also, there are some general stereotypes that I used to believe (like probably a lot of people!).  My son does not fit a lot of stereotypes.  Namely:  he is physically affectionate and has always been very attached to me and his other family members;  he has never flapped his hands or toe walked;  I think he pointed and gestured (but I think he pointed and gestured in a way where he was not establishing joint attention ----- I am vaguer on this, b/c I would say he pointed, but I am not sure that it "counts" as pointing the way people want it to when there is joint attention established and checked for).  

 

By those things, I did not think he could have autism (b/c don't all kids have those 3 characteristics?).  But then I found out those were not automatic characteristics.  When I found that out I felt more like "yes, this is what it is."  

 

But then -- the end of the story for me is that it is what it is.  

 

You could go through this process and have a different conclusion.

 

But I think that is good information, too.  I think there is something in thinking "maybe, maybe not" that can leave you (or it left me) feeling like an observer, looking for signs and wondering about them, and then when I got an answer, I felt more like jumping in and doing things, and I did not have the same kind of observations and internal conversations anymore.  That was valuable for me.  

 

Edit:  I mean, I now spend zero time noticing things and thinking "is that autism?"  I also no longer have awkward conversations where people wonder if I am seeing things that they are seeing and why I do not notice what they notice.  It was agonizing at first, but now I am much more comfortable to be out in the open as an autism parent.  My son is (btw) someone where it is obvious to some people in some situations, though not everyone in every situation.  It is not a big deal but I can have necessary conversations as they come up (to share information) and/or talk about things if someone is curious.  

 

I also no longer have the same worry that maybe I am just a bad parent who cannot handle my own kids.  

 

I also feel much more confident and comfortable with being in public and sometimes being noticeable.  

 

But do you know what I mean -- wouldn't it be nice to be done with gentle conversations?  I really do not like them.  It is easier to be on the same page.  And then if you get different information -- you can be back on the same page, too.  I found them to be unbearable awkward. 

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Thank you all for your responses! It's helpful and comforting.

 

Would the fact that he already has OT and ST evals in any way (maybe) speed this process up?

We have something called "Baby Net" in our city, where all children who qualify are covered through age 3 with in-home therapies, which is what covered him until a couple months ago. In order to qualify, he has seen general evaluators, early intervention specialists, ST evaluators (beyond his own private ST), OT evaluators, etc.

He currently only receives Early Intervention (because he actually qualified to keep her past age 3, because it was determined that his needs were at least that extensive) and ST (which we have to pay for privately now that he's 3). 

 

 

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For the way it worked for us -- it would not have sped things up for us.  It would have given the people on the diagnosis team more information.  

 

But I think there are situations where it would speed it up, b/c they might be able to run fewer tests if some are already run.

 

But for us the wait was for the appointment, and it would not have gotten us a faster appointment.

 

But on the Internet I have never heard of another place where *everyone* is diagnosed at one place, and it is a 4-hour appointment.  I know a handful of people whose kids got diagnosed at another place, but I called them, and they try to refer everyone back to the place I ended up taking him, unless they have complex medical needs (aka epilepsy I think).  

 

(The tele-medicine option in my town is still through the same place I went, it just saves the time and the hotel stay.)  

 

 

 

 

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My son wasn't diagnosed until 9, but he was very different by the age you are talking about. We didn't know anyone else with the gifted plus ASD (plus SPD, etc.) at the time--only people who actually had harder to deal with kids than ours who were not at all interested in seeking answers. We'd been burned, demoralized, and silenced by negative comments about our parenting and even been accused by a professional of lying about both my sons issues and his capabilities. We had no confidence or any idea where to go for an evaluation when our son was that age and were scared to point out anything to another professional.

 

So, I vote for an evaluation. I am not sure I would've understood or been ready for an ASD diagnosis when my son was that age, but I was sure ready for some kind of meaningful answers. It sounds like you are ready for whatever you might find out.

 

:grouphug:  :grouphug:  :grouphug:

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My little one was in EI services when we put her on the waiting list for the developmental pediatrician. It didn't speed anything up because like one of the PP's, the difficulty was getting an appointment. The dr. we saw had the shortest in the area (6 mos.) and that required driving an hour. The 2 closer clinics had a 9 mos. and an 18 mos. wait.

 

The director at the EI preschool was the one who pushed me for getting on the wait list for the developmental pediatrician. She moved DD into the more intensive class designed for kids with ASD, though it did not require a formal diagnosis. But it was the Early Start Denver model, which is a hybrid of ABA, Floortime, and TEACCH.

 

I thought that DD was "too social" to have ASD and even after the initial diagnosis by the developmental pediatrician I had serious doubts. It took 3 confirming evals for me to accept it.

 

The discovery of the hearing loss brought back those doubts earlier this year. But then we attended a parent-child workshop with other deaf & hard-of-hearing kids and it was painfully obvious that DD has special needs beyond just the physical disability. ADHD, SPD, visual and auditory memory deficits, and mixed expressive-receptive language delay for sure. Difficulty with appropriate social interactions for whatever mix of reasons, absolutely.

 

Atypical autism? I'm not certain. I prefer the original EI diagnosis of "Global Developmental Delay" even if she's technically too old for that. She is delayed in multiple domains and it's not due to ID or the hearing impairment.

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My kid was 3 when he was referred to Developmental Peds, 4 when he was diagnosed. Where we lived at the time (public system) we saw psychologists/SLP/ and a dev. paediatrician. I felt railroaded through the whole process, and felt they weren't that thorough, though I do believe they came to the correct diagnosis. Where we used to live, a diagnosis of autism got you a whole mess of services which no other diagnosis got, so there was lots of motivation to give ASD vs. another diagnosis. I honestly found the whole thing incredibly painful, but in the long run it has absolutely been worth it. The label helps us to understand him better. The label has given us the courage to do what is right for our kid, even when it seems silly (like asking people not to use hand-dryers in the bathroom, etc.) all of which has reduced his anxiety. And the label helps him to understand himself. So do it, but it's hard. Really hard. Anyway, good luck. 

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My ds seemed a lot like yours at that age. He was hyperlexic, reading at 2. He was super smart and astounded people with his reading and his knowledge bank (he remembered everything he read and he read obsessively). He had lots of sensory issues and started speech and OT at 3. We went through educational instead of medical testing by the recommendation of his speech path when he was about 3.5. I'm very glad we didn't wait longer.

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