4C, 4 Momma, 4D, 4A, and 4B

4C, 4 Momma, 4D, 4A, and 4B
Most of the Four me (and you) fam

Wednesday, February 15, 2012

Journey to DX, part 6: finding your family's "right" path to DX

Finding the right path to diagnosis for your child is personal, subjective, and private. You will have to decide in your heart (and your bank account) the right path for your family.

I can provide you with only one path, ours. It should not dictate yours. You will have to do the research in your own area to decide the best path for your family. I simply hope to give you markers or factors to consider in your own process of finding the right path. This post simply gives you an example of one family's decision-making process on the major issues involved. This is a really hard decision to face as a family. We made the best decisions that we could with what was available to us; you'll do the same.

My first draft on this topic was woefully one-sided and subjective. As such, I fear that it lacked credibility. Not wanting to "jump the shark" on grounds of credibility, I self elected to redraft. If you read the original version, you will (I hope) notice marked improvements.

We started our journey to DX with our local early intervention office because it was close and free. Our original concerns were gross motor; early intervention services quickly provided a PT, and our gross motor issues (the ones presenting at the time) cleared up in a matter of weeks. 4A was 14 months old at the time.

Great.

Fast forward 10 months, and we desperately needed help. 4A, just shy of 2 years old, was an absolute mess. She was extremely scripted in her speech. Her speech seemed programmed, not organic, and she constantly, CONSTANTLY repeated words and phrases over and over and over and over and over. She was ritualistic and rigid in her play and didn't "pretend" play in the classical manner. She screamed/tantrummed (not in the whiny, "I didn't get my way" way that most folks imagine but in a hysterical, hands over her ears, rocking way). Her eye contact was inconsistent but largely nonexistent. We desperately needed help.

We called early intervention services. They offered to reassess her. The wait for said help this educational route was 6 weeks or so.

Around the same time, we scheduled an appointment with a developmental ped at an outstanding autism diagnostic/treatment/research facility that, as luck would have it, is less than an hour drive from our home. The wait for this doc was over 6 months.

So, we had the educational system working while we we waiting for the medical one. (If you need info about the two routes to DX (medical v./& educational), here is a good link for you to check out.)

I think it was around this time, but it was honestly probably earlier, that we talked with our amazing pediatrician about how to proceed: medically or educationally. Where we live, there was no one qualified or trained to diagnose educationally at 4A's young age; I will be forever grateful to the early intervention psychologist who candidly explained that to us. To get an educational diagnosis, we were going to have to wait until elementary school. We also live less than an hour from the amazing, renowned autism center I mentioned above. To get a medical diagnosis, we were going to have to pay what seemed like a good bit of money. Because 4A was (is) a girl and because she was so high-functioning, our pediatrician advised the medical route for diagnosis.

What to do? What to do?

Our thought process went something like this. Elementary school was THREE YEARS away, and I didn't think we'd make it that long. We needed help NOW. Early intervention services' options for help (PT, OT, and social skills class) just weren't cutting it. They seemed woefully ill-equipped to address 4A's symptoms. The early intervention psychologist was outstanding, and she really saw 4A as "spectrum-y" from very early on. She just didn't have a way to provide services; I will always be grateful for her candor.

For us, the two more important pieces in our decision were our eventual relationship with her educators and an accurate and credible diagnosis. With regard to the former, we wanted 4A to enter school on our terms, with our assessment of who she was paramount and credible. We didn't want school trying to figure out who she was and what she needed, brushing her off as a problem kid or a kid with shitty parents. We wanted experts, medical experts, to decide who she was and what she needed and tell the educators. She was (and is) a girl, after all. Even folks who truly get autism don't always get girls with autism. At the time, we had no idea what her school would be like.

With regard to the latter, we needed to know FOR CERTAIN that 4A had autism. Because she was a girl and because she was high-functioning and because her symptoms appeared largely as opposition (and I will come back to this, believe you me!), we needed a gold-standard assessment by the most qualified person available in our area at the time to know whether or not she really did, in fact, have autism. Remember, there is no blood test. There's no way to know for sure. For us, we needed "for sure," and the medical route was our best chance of knowing "for sure" at her early age because we were not willing to wait until she started school and there was no educational diagnostician available to diagnose her at her age.

We decided, then, to pursue a medical diagnosis while waiting for an eventual educational one.

Now, this raises the interesting question of at what age a diagnosis is appropriate. Oh my! Experts can't even figure this one out, so I'm not even going to try. I will tell you this. Everyone involved from the beginning (docs and early intervention services) and those who joined our team later (educators) have all consistently advised that the longer you can wait for a DX the more credible it will be. When kids are young, a lot of the behaviors caused by a myriad of disorders (autism, bipolar, ADHD, etc.) can look the same or similar (and, I would make the very important caveat that this is more likely the case if the folks doing the observing are not renowned experts with loads of clinical experience).

We started super early. 4A was not yet 2 when we started our journey. Your child may be older. If s/he is older, you may seriously consider the educational route. It just wasn't available to use at the time that we started. We were unwilling to wait for elementary school because we wanted her to enter school on our terms and not run the risk of them misinterpreting her symptoms. If you remember, she had been asked to leave her first preschool, and she and her symptoms and her treatment plan had been woefully misunderstood at that school. Perhaps that shell-shocked us and made us irrational. I don't know. I do know that we wanted the very, very best diagnosticians available in our area at the time to do the diagnosing. For us, given our location and her age and her gender, those diagnosticians were medical experts.

Now, fast forward to third grade, and I know (I KNOW) that the school psych in our school would have given us a credible diagnosis. She's trained beyond even some of the experts at the facility where 4A was diagnosed. She has a long clinical history. She trained at the "best of the best." I did NOT know that when 4A was 2. Should we have waited for educational diagnosing once she entered school? I can't really say. I can tell you that we weren't willing to wait. Whether or not it all would have turned out okay, I can't know. I do know that her medical diagnosis was credible and thorough and accurate. It satisfied this wonderfully qualified and capable educational diagnostician such that she accepted the medical diagnosis without making her own. I can't tell you if that would happen for you. There is a fabulous piece you should read if you have questions or doubts about this, and you can find it here.

Here's the bottom line, friends. The tools both the medical and educational folks use are identical. The same. What may or may not differ is their experience with them. That is where you need to do your research. Figure out what tools they're planning to use. Figure out how much experience they have in using them on kids your child's age and gender. Do your homework. Don't just assume that they're qualified.

I will say this...a LOT of people seem to wait for school to do the diagnosing. A lot of folks wait for that because it's free. I have two things to say about that.

First, waiting until school for diagnosis should not mean waiting for treatment. Even if you feel you want to wait until school for diagnosis, start treating NOW. Figure out what works for your kid. Throw her teachers a bone. The less you send her along with an "I can't figure it out, but good luck" message and the more you figure her out and get data on what works for her, the better off you are all going to be: your child, her teacher, and you. This relationship that you're about to embark on with your child's school is a long and complicated one. Start out on the right foot, the one of respect.

Second, critically assess the money involved for a diagnosis. Only you know what your insurer will cover. Only you know what you can "afford." I use quotes there because I strongly challenge you to be very careful with this "can we afford it?" business. This is your child's education and future that you are talking about. The choices you make now are going to follow her for her whole life. Not to put undue pressure on you, but use that as one of your parameters in your decision making process.

We paid out-of-pocket for all behavioral psych treatments and the ADOS. A kind case manager at our insurer saw 4A's file float across her desk and decided to dig a bit deeper. When she called us FOUR YEARS into the diagnostic process, I had to laugh and ask her why the hell she called now after four years? When she heard all that we had been through in our quest for answers, she pulled some strings and got our neuropsych profile covered.

The numbers are really irrelevant, but let's just say that we probably could have paid for a year at community college with what we spent on 4A's diagnosis. It was hard. We struggled to figure it all out financially. We did without a LOT of things (clothes for ourselves, vacations, furniture, lessons for the kids...a lot of things). When I look at that money, I actually divide it in my mind over the 13 years that she'll be in school. That yearly amount then becomes much easier to swallow.

But, all told, if we had it to do all over again, I would do it exactly the same way. I have not an ounce of regret. We know. We know that she has autism, and we found that out earlier than we would have had we waited for educational diagnosis. There are no questions. That peace is priceless. And, 4A is doing so beautifully that many wonder if she really even does have autism. All that money, all that sacrificing, all that time allowed this beautiful progress and adjustment and development and presence in her life. That, too, was worth every penny.

Now, here are some addendum...

(1) What do you do if the school folks have "labelled" your child with autism, but you don't think she's on the spectrum?

First, hugs, my friend. A DX of autism, when you weren't looking for it or suspecting it, probably hurts so very much. I would recommend a couple of things.

First, figure out whether your child was screened or diagnosed. There is a difference! To figure out the difference between the two, look here. Ask the examiners. If they don't answer to your satisfaction, ask for a list of the tools they used. These will look like a bunch of alphabet soup. See below.

Second, figure out what diagnostic tools were used. If you are drowning in the sea of alphabet diagnostic soup, here's a (partial) good list of diagnostic tools with information about them.

Third, inquire as to the examiner's clinical experience with using these tools. It is theoretically irrelevant whether a doc or an educator performs the testing. What is important is the examiner's experience in using the tool at issue.

Fourth, it's okay to ask for a second opinion, especially if you feel that the examiner was not altogether experienced with the tool used or doesn't have a long clinical history. Ask for a more experienced examiner. Ask for a different module of the ADOS. Ask those hard questions, respectfully, of course, because this is YOUR kid. If you've received an educational diagnosis of autism, you could certainly seek a medical assessment. The neuropsychological profile is the gold-standard diagnostic tool. Find yourself an outstanding developmental ped with a long clinical history (and if your daughter is a girl, find one who has diagnosed girls). Folks in your local ASA chapter (Autism Society of America) will know who the good/credible docs are in your area.

Finally, try super, super hard not to think of this as a label. It is an assessment of your child's neurological capabilities. As such, if it's done accurately by an experienced examiner, its results will give you and future educators a lot of information on what your child needs to succeed at school. Because his/her wiring is different and you now have proof of that, s/he will need different supports and tools than neurotypical children need to learn the same skills. This will actually be a great thing.

(2) How do I really know if my child's diagnosis is accurate?

I am not the person to answer this question because I am not a doctor or an expert. If you follow the little flow-chart that I made above, you will have better clues as to whether or not your child's experience was credible. If you are at all in doubt, try to find a really credible developmental ped or school psychologist who can help you get to the bottom of all of it.

(3) How do I decide whether or not an educational diagnosis is enough?

You have to ask around, do your homework, do your research. Start here. Figure out the clinical experience of the available diagnosticians. Search your heart. Inventory your pocketbook (but be VERY careful to be really critical about the expense). Let me put it this way...If 4A had already been in school and if we knew that our school diagnostician had a large clinical experience with the tools she was using on kids of 4A's age and gender, we probably would have gone for it.

As to whether or not you want to be in the driver's seat regarding diagnosis before school starts, you'll want to talk with your pediatrician and your local early intervention services office. Ultimately, the decision is yours, but they can better help you identify the parameters for making it.

(4) What is the difference between a medical diagnosis and an educational one?

To a large extent, they are very similar in that the same or similar tests are used to assess the presence of autism. As I said earlier, theoretically, it doesn't matter who does the assessing: a doctor or an educator. What does matter is the examiner's clinical experience and skill in using the tool. You'll have to assess who has the highest level of experience and skill in your area for yourself.

But, in a very broad nutshell, an educational diagnosis is made pursuant to Chpt. 14 of the IDEA (Individuals with Disabilities in Education Act), and a medical diagnosis is made pursuant to the DSM-IV (as of this writing). A child can only receive services at school if she has an educational diagnosis of autism. For us, our medical diagnosis of autism made the educational one an ipso facto slam dunk. I can not speak to anyone else's experience.

3 comments:

  1. Hollie,
    Your post really strikes a chord for me. Like 4A, our daughter "K's" weak gross motor skills and odd speech patterns were one of our first indications of a potential issue. We also had "K" diagnosed with HFA/Aspergers and ADHD through both the educational and medical routes. "K" is almost 6 now and is demonstrating aggressive/oppositional behavior mostly at school. Can you suggest what types of therapists (psychiatrist, psychologist, etc) have worked for handling challenging behaviors for you and 4A?

    Thanks,
    Stephanie

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    1. Hey Stephanie: By far, the very best and most effective help 4A has ever received is behavioral, and she gets that from a PhD behavioral psychologist, not just an aide or therapist. Second to that, 4A sees a pediatric neuropsychiatrist who manages 4A's prescription Zoloft. I will address this in a future post, but the behavioral supports really only began to truly manage and eradicate behaviors after we hit a therapeutic dose of Zoloft. Folks in your local ASA chapter (Autism Society of America) can likely give you the beat on some good docs. The early intervention or school psych may also be able to recommend someone. Best of luck to you and "K." Hollie

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    2. Hollie,

      Thanks so much for the info! I'll look into those types of providers in our area. Best of luck to you and your family during your hiatus.

      Stephanie

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