Anyone with a child who was diagnosed Austistic or ASD and turned out not to be? - Mothering Forums

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#1 of 23 Old 07-10-2008, 11:40 PM - Thread Starter
 
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We have a diagnosis of Autism. My little one is high on the spectrum. I could see this going either up or down. Many characteristics and behaviors seem so workable, while some pose big challenges.

So, as I process all the information on Autism, it's occured to me to ask if anyone has had an offical diagnosis of Autism from a developmental pediatrician or other official evaluation and then with time the diagnosis turned out to be inaccurate?

I've heard of kids who seem like they are on the Autism spectrum but turned out to be late developers, or to have Apraxia, or to be deaf, or to have something else, or nothing at all.

I'd love to hear your experiences. Thank you so much.
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#2 of 23 Old 07-11-2008, 02:59 AM
 
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This happened to us. DD was dx at 3 by a dev ped, via the ADOS protocol, but now no longer meets the criteria for a PDD diagnosis.

We did a lot of nutritional interventions right off the bat, given that we have a family history of wonky reactions to food, and DD responded unusually well to having her laundry list of food intolerances and starchy carbs removed from her diet. (The EI people had even commented that they were astonished and had never noticed such abrupt changes with spectrum kids on special diets.) DD continued to have severe problems in language though. I started suspecting the autism diagnosis was wrong after reading more about neurodiversity and a lot of writings by ASC adults. My gut instinct told me that DD's language issues were coming from a different place, if that makes sense. In her core she just seems like a typical kid who is struggling a lot with language, not someone who is fundamentally wired differently.

And since so many unhelpful interventions were being suggested in our old school district, I sought the re-dx, and that professional agreed and said there was no way DD was autistic. DD now is considered to have a primary disorder of language, although the specific label for that condition is kind of up in the air but basically autism is no longer on anyone's radar screen. I don't think kids that really are autistic would grow out of it or lose the dx -- they are truly neurologically different. But in our case getting a dx too early missed the real picture and led to a lot of confusion in getting the right therapy.

Anyway, that's our experience...regardless I believe a lot in parental intuition on this and that it's important to be informed and to trust your gut.
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#3 of 23 Old 07-11-2008, 03:24 AM - Thread Starter
 
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Originally Posted by krissi View Post
This happened to us. DD was dx at 3 by a dev ped, via the ADOS protocol, but now no longer meets the criteria for a PDD diagnosis.

We did a lot of nutritional interventions right off the bat, given that we have a family history of wonky reactions to food, and DD responded unusually well to having her laundry list of food intolerances and starchy carbs removed from her diet. (The EI people had even commented that they were astonished and had never noticed such abrupt changes with spectrum kids on special diets.) DD continued to have severe problems in language though. I started suspecting the autism diagnosis was wrong after reading more about neurodiversity and a lot of writings by ASC adults. My gut instinct told me that DD's language issues were coming from a different place, if that makes sense. In her core she just seems like a typical kid who is struggling a lot with language, not someone who is fundamentally wired differently.

And since so many unhelpful interventions were being suggested in our old school district, I sought the re-dx, and that professional agreed and said there was no way DD was autistic. DD now is considered to have a primary disorder of language, although the specific label for that condition is kind of up in the air but basically autism is no longer on anyone's radar screen. I don't think kids that really are autistic would grow out of it or lose the dx -- they are truly neurologically different. But in our case getting a dx too early missed the real picture and led to a lot of confusion in getting the right therapy.

Anyway, that's our experience...regardless I believe a lot in parental intuition on this and that it's important to be informed and to trust your gut.
Thank you!

Your post was very, very helpful. I am just now beginning to research diet in connection with Autism. There is a lot of information out there about this.
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#4 of 23 Old 07-11-2008, 04:42 AM
 
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Yes, it was suspected my dd had PDD-NOS, but it turned out she had another disorder that was causing "autistic-like" symptoms. Now that she is on medication, she is doing much better.
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#5 of 23 Old 07-11-2008, 10:04 AM
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Well, at 2 1/2 we took DS to a neuropych who dx mild to moderate autism. That did not seem right to us (plus the guy was a UA violation). So we sought a second opinion at Kennedy-Krieger and DS' developmental ped there said DS was not even on the spectrum. At this point (DS is now 5) we have an ADHD and an anxiety disorder dx. But, DS' school last year pushed on the autism thing. We do not think he is autistic. He has some of the secondary behaviors but not really the core differences, if that makes sense. At least that's our view.

I also know of a kid who had an autism dx at the preschool age who eventually was re-evaluated and the label was changed to ADD in mid-grade school. I don't know the circumstances of the change or whether the parents felt the original dx was wrong or if the child truly changed that much or what.

Catherine
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#6 of 23 Old 07-11-2008, 11:24 AM - Thread Starter
 
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We do not think he is autistic. He has some of the secondary behaviors but not really the core differences, if that makes sense. At least that's our view.

Thank you!

I do think I know what you mean.

Could you, or anyone else, post what they see as secondary behaviors of Autistic children as they compare to core behaviors?

I have a feeling I know, but I am very interested in learning more.
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#7 of 23 Old 07-11-2008, 12:04 PM
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Eh, I am so not an expert. Hopefully one of the better informed mamas will come along and post.

The book, Engaging Austism, has a nice description of core issues versus secondary behaviors. (I don't remember if those are the exact words or not.)

For us, some of the things DS does that I think of as secondary behaviors: scripting, acute sensititivy to noise, lots of meltdowns.

Some random things that relate to what I think of as more core issues: DS gets nonverbal communication just fine (for example, I've seen people post about teaching their child that when they pat the seat next to them it means to come and sit down--I did not have to teach DS that, he got it the first time I did it). DS discriminates appropriately between people who love him and friends and strangers (I can hug him, his teachers cannot. He would never go off with strangers.) DS's issues are much more acute in settings where he's anxious--if they were based in austim they would be more consistent across the board rather than showing up solely where his anxiety is causing the problem.

I have a little theory that for kids in a grey area for dx, what dx you get depends on the philosophy of the person doing the dx. So our neuropych was pretty invested in dxing kids with autsim, treating them with ABA and declaring them "cured." Our developmental ped has a broad practice, sees kids with a wide range of issues, and isn't too into "curing" anything (not that he's opposed to intervention, just that he's into letting kids be kids and helping more than curing) Just my speculations though based on a really limited set of data.

I feel the need to add that I don't think autism is necessarily bad or even harder to deal with than DS's anxiety and attention problems. And I remain open to the idea that we could be wrong and this really could be autism. I just don't want the wrong label attached to him, because I don't want teachers/therapists/etc to act on an incorrect set of assumptions.

Catherine
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#8 of 23 Old 07-11-2008, 12:06 PM
 
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I have known several, both cases of mis-diagnosis and cases where the child just sort of naturally grew out of things until the differences were not considered "clinically significant" anymore. Several people I know who probably would have been thought of as severely on the spectrum have grown up to be just kind of eccentric.

Sort of on-topic, I was at Disability Services at my university and was asked (as I am every semester) if I needed any accommodations for AS. And I really don't, anymore. They'd have been really helpful in junior high, or even at my first try at college, but honestly, at 32 years of age I have my own coping strategies and HAVE developed to the point where I know what I'm capable of and how to manage my day. So, while the diagnosis is on file with the school, I'm not treating it as a relevant disability anymore.
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#9 of 23 Old 07-11-2008, 12:08 PM - Thread Starter
 
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Eh, I am so not an expert. Hopefully one of the better informed mamas will come along and post.

The book, Engaging Austism, has a nice description of core issues versus secondary behaviors. (I don't remember if those are the exact words or not.)

For us, some of the things DS does that I think of as secondary behaviors: scripting, acute sensititivy to noise, lots of meltdowns.

Some random things that relate to what I think of as more core issues: DS gets nonverbal communication just fine (for example, I've seen people post about teaching their child that when they pat the seat next to them it means to come and sit down--I did not have to teach DS that, he got it the first time I did it). DS discriminates appropriately between people who love him and friends and strangers (I can hug him, his teachers cannot. He would never go off with strangers.) DS's issues are much more acute in settings where he's anxious--if they were based in austim they would be more consistent across the board rather than showing up solely where his anxiety is causing the problem.

I have a little theory that for kids in a grey area for dx, what dx you get depends on the philosophy of the person doing the dx. So our neuropych was pretty invested in dxing kids with autsim, treating them with ABA and declaring them "cured." Our developmental ped has a broad practice, sees kids with a wide range of issues, and isn't too into "curing" anything (not that he's opposed to intervention, just that he's into letting kids be kids and helping more than curing) Just my speculations though based on a really limited set of data.

I feel the need to add that I don't think autism is necessarily bad or even harder to deal with than DS's anxiety and attention problems. And I remain open to the idea that we could be wrong and this really could be autism. I just don't want the wrong label attached to him, because I don't want teachers/therapists/etc to act on an incorrect set of assumptions.

Catherine
Wow. Thank you so much! This was really, really helpful!
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#10 of 23 Old 07-11-2008, 12:09 PM - Thread Starter
 
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I have a little theory that for kids in a grey area for dx, what dx you get depends on the philosophy of the person doing the dx.
:

You know, I am in the midst of developing that very theory. That very thought has occured to me several times.

We seem to be in a very gray area for a dx. And something is telling me what you said is very, very true. Actually, I think that gut feeling is why I posted this question to begin with.
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#11 of 23 Old 07-11-2008, 12:10 PM - Thread Starter
 
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I have known several, both cases of mis-diagnosis and cases where the child just sort of naturally grew out of things until the differences were not considered "clinically significant" anymore. Several people I know who probably would have been thought of as severely on the spectrum have grown up to be just kind of eccentric.

Sort of on-topic, I was at Disability Services at my university and was asked (as I am every semester) if I needed any accommodations for AS. And I really don't, anymore. They'd have been really helpful in junior high, or even at my first try at college, but honestly, at 32 years of age I have my own coping strategies and HAVE developed to the point where I know what I'm capable of and how to manage my day. So, while the diagnosis is on file with the school, I'm not treating it as a relevant disability anymore.


Very, very helpful. Thank you!
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#12 of 23 Old 07-11-2008, 12:18 PM
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Glad to be of help. If you are interested, you might want to check Engaging Austim out of the library and see if the discussion of core issues and secondary behaviors is useful to you.

And I hope others will post to as I find this interesting as well. And I know that kids on the spectrum do vary widely in terms of personalities and challenges. And I suspect many here would disagree with my characterizations of core and secondary issues. And that perspective is really useful too!

Catherine
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#13 of 23 Old 07-11-2008, 01:24 PM - Thread Starter
 
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Glad to be of help. If you are interested, you might want to check Engaging Austim out of the library and see if the discussion of core issues and secondary behaviors is useful to you.

And I hope others will post to as I find this interesting as well. And I know that kids on the spectrum do vary widely in terms of personalities and challenges. And I suspect many here would disagree with my characterizations of core and secondary issues. And that perspective is really useful too!

Catherine



Yes, exactly.

Good post!
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#14 of 23 Old 07-11-2008, 04:14 PM
 
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cases where the child just sort of naturally grew out of things until the differences were not considered "clinically significant" anymore

This is where my daughter is going I believe. She was dx'd with classic autism using the ADOS, BASC-II, Vineland, etc just before she turned 3 ("results" day was the day before her 3rd birthday). Her only speech was one-word echolalia, she didn't notice people coming and going, she'd bang her head on the ground, she'd stim all day no matter where we were (the girl loved to spin), lined up toys, smeared feces, no pretend play - I could go on and on. During the appointments she'd stand next to the doc and rub the back of her hand back and forth on the examiner's arm - she did this every exam day for an extended amount of time. The doc saw that it was comforting to my daughter so let her do it.

We did speech therapy, occupational therapy and a language-based preschool program with typically developing role models. She tested out of her IEP in May (as it was based on language). She is still delayed in language by about a year but she misses the cutoff for qualification.

Some days she just screams autie and other days everything is sub-clinical. She'll be five in November and will stay in the language-based preschool program for the coming school year.
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#15 of 23 Old 07-11-2008, 09:36 PM
 
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My 27 month ds was diagnosed as being on the low end of the spectrum at age 24 months. Even when he was diagnosed his ST and others weren't quite sure if he was on the spectrum or not. They decided he was but told me there is a good chance his diagnosis could be switched back to developmental delay after 6 months (we were scared of the autism label and to have it on his records). He is in TAP (Toddler Autistic Program) classes twice a week and has speech therapy once a week. All of his "austistic" symptoms that concerned us are gone. His main thing was speech delay and not always responding to his name.....he is starting to repeat everything I say now and he always responds to his name. His twin sis just started with an OT and she looked at my ds and said she didn't think he was autistic. It's hard to talk with the other mothers at TAP because they kids are on the high end of the spectrum and mine might not be at all. And now that they don't diagnose the low end as PPD-nos anymore, everything is considered ASD....it's hard to compare kids that are so different. We are just waiting for October to see if they change the diagnosis, which I think they will. He may have a few sensory issues but we truly don't feel like he is on the autism spectrum. It's a great feeling knowing that........but even if they don't change the diagnosis, there is nothing that I would change about our ds even if we could.......he is perfect.
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#16 of 23 Old 07-12-2008, 03:02 AM
 
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Your post was very, very helpful. I am just now beginning to research diet in connection with Autism. There is a lot of information out there about this.
In our case I don't believe that DD truly should have been diagnosed with autism to begin with and what helped most was not the typical autism approach of GFCF / enzymes but drastic reduction of starches and grains (based on SCD but not strictly and GFCF alone, which we tried first, helped but didn't make a huge difference). Lately I suspect that we have blood sugar regulation issues in the family, given issues with myself and with DS, and I wonder if that specific diet helped DD so much because of stabilizing blood sugar...not that the exact explanation really matters.

Specifically the issues addressed by diet were nausea and headaches, concentration, sensory issues, overemotional behavior (like meltdowns over the slightest frustration), and hyperactivity. In toddlerhood, those behaviors combined with ability to understand only one or two words at a time (and lack of adaptive skills to cope with this), did appear to mimic autism.

With diet addressed and with communication skills acquired the past few years, DD is still an introvert with a quirky personality and has issues with anxiety but she is otherwise a pretty typical 5yo. She has similar interests to other kids and has a typical play style, seeks out company, loves to try new things just for the heck of it, requests to help me around the house, initiates joint activities with family members (including her little brother), figures out how to behave without needing to be told, etc. But it can still take her over a minute to form a sentence and get the words out, often in a jumble, and receptively she still needs a quiet setting, slow and simplified sentences, and a lot of patience and sometimes repetition in order to understand spoken language.

And I too have reached a point that I no longer think of autism as a tragedy, although I did find it scary at first, but I also think not all kids with developmental differences are really autistic that getting the dx right can matter when therapy approaches differ from one dx to the next.
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#17 of 23 Old 07-12-2008, 11:31 AM - Thread Starter
 
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And I too have reached a point that I no longer think of autism as a tragedy, although I did find it scary at first, but I also think not all kids with developmental differences are really autistic that getting the dx right can matter when therapy approaches differ from one dx to the next.
True, I like how a few people said that kids on the spectrum have their own unique characteristics that are part of what we love about them. I completely agree with this.

But I think Autism as a diagnosis can be a tragedy if the family doesn't have the resouces to meet the needs. That is a tragedy. Thank goodness I have health insurance and some personal money to throw at things that aren't covered. If I didn't have those two things, we'd be in a bad situation.

And I think Autism is a tragedy if it was caused by something known and preventable.

And also if you don't have anyone to help you get through it so that life is manageable and happy. I have a special needs child who is likely on the spectrum. I am zapped of all energy. I have no one to turn to for real help, even for a few moments so I can catch my breath. I'm usually pretty tired, overwhelmed, and dealing with the behaviors alone. So, there are days when I think darkly that it is a tragedy. That's just me being honest.

I think once we get to a point where things can run more smoothly and more easily, or I have some assistance, it won't be such a tragedy. Right now I feel like we've been struck face first with blunt force and I'm just treading water.
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#18 of 23 Old 07-12-2008, 11:32 AM - Thread Starter
 
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He is in TAP (Toddler Autistic Program) classes twice a week and has speech therapy once a week.
How do I find out if there are such classes in my community? I've not heard of these.
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#19 of 23 Old 07-12-2008, 01:03 PM
 
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But I think Autism as a diagnosis can be a tragedy if the family doesn't have the resouces to meet the needs.
Sure, I don't disagree with you on that. It sounds like you're really struggling and I hope you're able to get some assistance soon. I only added that sentence at the end of my post to clarify that I'm not someone who believes in avoiding autism dx at all costs because of a stigma or anything. I worry about that sometimes when discussing these issues.
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#20 of 23 Old 07-12-2008, 01:28 PM
 
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We had quite a bit of what I'd call armchair diagnosis of autism, when DS was going through a very rough patch around age 3. He was exhibiting some pretty alarming, uncontrollable behavior. His preschool arranged for an evaluation by someone from the county, but it took a while to get scheduled, and in the meantime we addressed diet issues. By the time of DS' evaluation his behavior and mood had changed a TON. The person who came was like "Uh, he seems fine to me." So there you go. He's still an intense kid but we haven't had a return to the constant over the top tantruming that we were seeing then.
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#21 of 23 Old 07-18-2008, 02:30 PM
 
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I think we are here with both of my kiddos...with dd she is most definitely bipolar now and I'm not so sure she has Asperger's anymore. I want to get another evaluation for her now that she is older and bipolar is apparent. As far as ds, he was just evaluated by a psychologist who says that although he does have speech and language impairment and ds is definitely on the shy side of normal, he does not see enough to place him on the spectrum. The psychologist told me that a lot of younger kiddos being placed on the spectrum actually have a mental illness such as bipolar that comes up later or are just rather unique and change as they grow.
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#22 of 23 Old 07-19-2008, 03:30 AM
 
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Snapdragon's dx is up in the air.

Sweet Pea, on the other hand, is very definetly on the spectrum. So we're on both sides at once.
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#23 of 23 Old 07-19-2008, 03:12 PM
 
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One of the school districts I used to work for had in the checklist of IEP diagnosis criteria "autism-like" and that was it. no "autism, no "PDD", etc. If the child seemed like he/she was on the spectrum, that was checked off. That way if the diagnosis changed from autism to AS or PDD, or even just very high sensory needs plus language delay, the qualification stayed the same and the child still received whatever services he/she needed at that time. It made everything much easier.

Early intervention specialist and parent consultant since 2002.
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