Yet another misdiagnosed child: "Autistic-like: Graham's story

[jodifla]

Here's a new documentary about a little boy who was misdiagnosed with autism when he has sensory processing disorder.

Of course, the therapies are different, and he didn't start to progress until his dad realized he'd been misdiagnosed.




http://www.autisticlike.com/ <http://www.autisticlike.com/>

 

[ireland_nicole]

I'm a little confused by the title of your post as to what your intention is. Autism is definitely an "umbrella" diagnosis. And I'm pretty sure his parents are glad he got early intervention as opposed to no intervention, since SPD is definitely the high end of the autism spectrum. Any therapies he received may have actually contributed to some healing... and therefore his current diagnosis. Our understanding of neurovariation is still only in infant stages. My children's diagnoses have changed multiple times, and I'm not always sure all the current ones are correct. We know for certain that their brains do not work in a typical way. We try a therapy, and what works we keep, and what doesn't work we let go of and move on. 20 years ago, there were no autism services. 20 years from now, I hope we have an understanding of what autism is, why it happens, and how to cure or prevent it. In the meantime, I think we are all on individual journeys with unique kids that have some commonalities with other kids.

 

[jodifla]

I'm a little confused by the title of your post as to what your intention is. Autism is definitely an "umbrella" diagnosis. And I'm pretty sure his parents are glad he got early intervention as opposed to no intervention, since SPD is definitely the high end of the autism spectrum. Any therapies he received may have actually contributed to some healing... and therefore his current diagnosis. Our understanding of neurovariation is still only in infant stages. My children's diagnoses have changed multiple times, and I'm not always sure all the current ones are correct. We know for certain that their brains do not work in a typical way. We try a therapy, and what works we keep, and what doesn't work we let go of and move on. 20 years ago, there were no autism services. 20 years from now, I hope we have an understanding of what autism is, why it happens, and how to cure or prevent it. In the meantime, I think we are all on individual journeys with unique kids that have some commonalities with other kids.

No, sensory Processing Disorder is NOT autism. The autism therapy they were using wasn't working, because the child wasn't autistic.

One of the experts even details very clearly that on the Good Morning America show yesterday.

My point is, too many children are being MISDIAGNOSED!!! TOO many alleged EXPERTS don't know what they are diagnosing!

It's a national disgrace.

 

[jodifla]

A couple of other points:

The parent was NOT happy about the wrong diagnosis.

I hate the term spectrum. It's too confusing and misleading ....people assume it to mean you can be "a little bit autistic."

In reality, you must be SEVERELY affected in the areas of communication, socialization and in repetitive behavior to get Dx of autism. Another doctor details that in one of the trailers.

The umbrella term refers to all the variations beyond that.

 

[LMC]

In our case the doctor completely missed the boat on the diagnosis when my child was 3yo so he missed valuable therapy years. When I mentioned that my child displayed some autistic characteristics the doctor flat out said, "He's not autistic" Well I didn't say my child was autistic but the doctor was very defensive and just snapped out, "well he's PDD-NOS". Well back then I guess that was not considered part of the spectrum because it wasn't until I had a re-eval done this past October, that the neuro psych told me that PDD/NOS IS on the spectrum. I do a lot of research but I guess way back then, it wasn't listed as such. Don't know how I missed it. It was no surprise to me but like I said, my child miss YEARS of services due to this crappy doctor brushing me off. I can never make up those years and he is now 14yo and his motor skills rate 5yr to 7yr11mo's. So I don't think autism is over diagnosed (at least not in our case).

 

[KirstenB]

Jodi, I love Dr. Greenspan. I have a couple of his books i go to regularly. He was my first resource when we received an autism dx. The spectrum IS confusing. I know you and I have talked before. Zoe's speech therapist always said, she's not autistic. She has auditory processing disorder, possibly visual processing disorder, suspected apraxia of speech, gross motor delays, and motor planning issues. Whew!!

Here in Virginia, all any of that means, regardless of autism dx, or not, is minimal early intervention. When I say minimal, let me be clear. I'm grateful for her one hour a week of speech therapy, physical therapy etc. But then I read where kids in NJ get like 25 hrs a week of therapy. I'm jealous.

Zoe most certainly does not have classic autism. We're very blessed. She was dx'd at our Children's Hospital with high functioning autism. She's in special ed preschool with 6 other kids of varying needs. My question is: what should it be called when a child has difficulties that cross several areas?

Zoe's teacher and therapists agree she is not a good candidate for traditional ABA. They do a modified ABA when they work with her. I've seen enormous progress. Her speech is greatly improved. She's developed a keen sense of humor. I always thought humor was a more advanced state, whether talking about normal kids, or kids with delays.

If her therapies/education were very narrowly tailored, I'd agree with you more. There would be room for enormous error. However, in her general special ed setting, she's flourishing. As a matter of fact, her teacher is recommending she spend 1/2 time in a "normal" preschool class, and 1/2 time in special ed for next school year. They have "normal" kids come into her class throughout the day now, and she interacts well with them.

Please understand, I'm not negating your experience or anyone else's. Merely offering our own experience, which has been positive. BTW, our school system doesn't do dx's. They are very clear that they focus on the child's delays and needs. Their assesment doesn't even have a line for dx. They leave that up to the parents to pursue.

 

[jodifla]

Jodi, I love Dr. Greenspan. I have a couple of his books i go to regularly. He was my first resource when we received an autism dx. The spectrum IS confusing. I know you and I have talked before. Zoe's speech therapist always said, she's not autistic. She has auditory processing disorder, possibly visual processing disorder, suspected apraxia of speech, gross motor delays, and motor planning issues. Whew!!

Here in Virginia, all any of that means, regardless of autism dx, or not, is minimal early intervention. When I say minimal, let me be clear. I'm grateful for her one hour a week of speech therapy, physical therapy etc. But then I read where kids in NJ get like 25 hrs a week of therapy. I'm jealous.

Zoe most certainly does not have classic autism. We're very blessed. She was dx'd at our Children's Hospital with high functioning autism. She's in special ed preschool with 6 other kids of varying needs. My question is: what should it be called when a child has difficulties that cross several areas?

Zoe's teacher and therapists agree she is not a good candidate for traditional ABA. They do a modified ABA when they work with her. I've seen enormous progress. Her speech is greatly improved. She's developed a keen sense of humor. I always thought humor was a more advanced state, whether talking about normal kids, or kids with delays.

If her therapies/education were very narrowly tailored, I'd agree with you more. There would be room for enormous error. However, in her general special ed setting, she's flourishing. As a matter of fact, her teacher is recommending she spend 1/2 time in a "normal" preschool class, and 1/2 time in special ed for next school year. They have "normal" kids come into her class throughout the day now, and she interacts well with them.

Please understand, I'm not negating your experience or anyone else's. Merely offering our own experience, which has been positive. BTW, our school system doesn't do dx's. They are very clear that they focus on the child's delays and needs. Their assesment doesn't even have a line for dx. They leave that up to the parents to pursue.

You make a lot of great points.

Have you ever read The Mislabeled Child? They've got some really fascinating looks at why many children get the wrong labels and therefore the wrong services.

I think in each case, a child's issues should be treated immediately. But too many kids are treated with the wrong therapies, and they don't progress like they should. An ASD Dx is becoming this lazy catch-all that doesn't pinpoint a child's true needs.

And worse, it leaves parents open to being preyed upon by a lot of snake oil salesmen who empty out their bank accounts and wreck their marriages, all promising a false cure.

 

[bookwormde]

Not near enough information on the link to really know much. Any other info?

If he is of the age as pictured then it is unlikely that any qualified clinician would have ruled out a formal diagnosis at this point since HFA and Aspersers as he enters the more challenging years for these individuals.

Again if he had qualified clinicians from the start they would have not been doing “blanket” non individualized therapies, but would have been helping with the sensory processing therapies which at there core are identical for both non-spectrum and spectrum individuals.

Again the damage or missed opportunities occur not from a questionable diagnosis but from poor individualization of therapies which should be the same for 2 individuals with the same indicators and characteristics, one with and one without a formal diagnosis.

Genetic mapping will eventually tell if the misdiagnosis discussion was about poor clinical therapy practice, true misdiagnosis or just sociological fear of the autism label.

I agree there are a lot of undereducated, incompetent or just plane lazy clinicians who apply a label without properly evaluating, documenting and developing therapies for the individual characteristics; labels are for insurance companies and the government and have very little value outside that for highly competent clinicians who treat individuals

bookwormde

 

[KirstenB]

Jodi, I'll have to look for that book. I'm going to look at my Greenspans today. I remember he spells out what autism is and is not in the first part of one of the books. I totally agree with you that there are a lot of folks out there selling very expensive treatments. It's overwhelming to muddle through therapies, vitamins, controlled diets, etc, and try to figure out what would help your child.

I swear, I think Zoe's best therapist is her big sister Andi!! She's the one who coaxes a lot of milestones out of Zoe. I think every kid with learning disabilities, regardless of what they're called, needs a big kid role model. If not a sibling then someone like a cousin, neighbor, someone from church.

 

[Schmeck]

If he is of the age as pictured then it is unlikely that any qualified clinician would have ruled out a formal diagnosis at this point since HFA and Aspersers as he enters the more challenging years for these individuals.


I agree there are a lot of undereducated, incompetent or just plane lazy clinicians who apply a label without properly evaluating, documenting and developing therapies for the individual characteristics; labels are for insurance companies and the government and have very little value outside that for highly competent clinicians who treat individuals

bookwormde

bookwormde, could you clarify the first sentence I quoted from your post above? I think it's missing a part of the sentence, and I'm very interested in what it means, but I can't wrap my brain around it this morning. Not enough caffeine yet. Something is missing after the HFA and Asperger's, is it the word 'emerges' or something like that?

I totally agree with the point you made about labels just being needed for insurance and payments. I rarely think of the students I work with as having any sort of label. I just work on what they need to be successful. One of my students is graduating this year, with a full academic diploma! I'm so excited for him!

 

[bookwormde]

Schmeck,

Sorry a little adjustment to make it more readable.

If he is of the age as pictured then it is unlikely that any qualified clinician would have ruled out a formal diagnosis at this point, for HFA and Aspersers, as he enters the more challenging years for these individuals.

bookwormde

 

[jodifla]

Schmeck,

Sorry a little adjustment to make it more readable.

If he is of the age as pictured then it is unlikely that any qualified clinician would have ruled out a formal diagnosis at this point, for HFA and Aspersers, as he enters the more challenging years for these individuals.

bookwormde

iin many of the clips he's very young...in other clips I saw, he looks around 4.

 

[bookwormde]

yes that is the age I thought, a little young to come to any final conclusions either way for many children on the HFA/Aspergers end of the spectrum

bookwormde

 

[jodifla]

http://m.dailybreeze.com/dailybreez...3Rmm0q4&storycount=14&detailindex=0&full=true

This story says Graham is 5 now.

I know that our researchers say by age 5, their Dx accuracy rate is well over 90 percent. And they follow children for years, into adulthood, so they can verify their accuracy.

 

[bookwormde]

Thanks for the extra link, that helps to understand the situations much better.

ABA is in most cases is so poorly applied that even in clear cases of HFA and Aseprgers if not used as a basis for a skills teaching program is virtually useless except if you want to modify a specific behavior with minimal possibility of generalization. Also ABA without fully understanding the sensory issues of a child can be downright abusive.

The floor time model is a great program for all children and has been exceptionally helpful with HFA/Aspergers children (my son still does a form of this as part of his therapy sessions). It seams to really help with self-adaptation which can often eliminate the maladaptive manifestations which frequently put an individual “over the line” into a formal clinical HFA/Aseprgers diagnosis.

It sure sounds like the first clinicians this family had was far from fully competent, unfortunately this is the case in a majority of cases.

Once he is in the full generalized academic (1st grade and above) setting the parents (and clinicians) will be able to have much more confidence in what pieces of spectrum genetics he actually has, if it is just the sensory portion many school have become reasonably educated about this since it is a “must accommodate” component for children with a full formal autism diagnosis.

Thanks for the “read” I will be interested in the follow up in a couple of years.

For Aseprgers the vast majority of clinical diagnosis do not occur until 6+ YO which is very different from classic autism or even HFA.

bookwormde