Cracking the code—why labels don’t matter so don’t drive yourself crazy

[Anonymous]

Anonymous wrote:

Anonymous wrote: Good post OP. Parents get themselves crazy over labels, even when the label fits. The goal is the get your child the best support possible for his/her unique needs and to keep your child from turning off of school and feeling dejected. As a parent of a kid with SN I understand their initial reluctance, but I am always surprised by the parents who never get past it.

I have known parents who did not disclose anything and let their kids flounder rather than even get an IEP. I have known parents who went to great lengths to find the 1 clinician willing to call ASD ADHD. (Newsflash: many clinicians consider them on the same spectrum and ADHD does not imply higher functioning than ASD-even socially believe it or not. Many kids with ASD get the needed social skills interventions and by a certain point can function better socially than kids with ADHD who were not getting social help despite deficits).

As parents I think we need to alas ask ourselves

1.) Is my reluctance to accept a label about my child's needs or about my ego

2.) Am I doing the best I can t get my child the services he/she needs to thrive or even just manage?

3.) Am I accepting my child for who he/she is or for what his/her actual needs are?

So I understand that people wanted to give your kid an ASD label that you didn't and don't think is right. But I just want to say to any parents who are new to all of this and coming here for our wisdom that "don't let anyone tell you your kid has autism if you don't think so" can be a very dangerous message. Sure, mistakes are made in diagnosis. But here's the thing. "No, it can't be autism" is the first reaction of A LOT of parents, particularly of "high-functioning" / Aspergers kids, because the spectrum is incredibly diverse and there are so very many misconceptions about it. The fact that your kid is really smart, and affectionate, and funny, and empathetic, and has "theory of mind," or whatever, does not actually mean that he or she is not autistic. Most of the time, resisting the diagnosis based on what you think you know about autism is a mistake. So by all means inform yourself, but don't think it can't be true just because your kid is great, and very capable. Aspies are great, and capable--just challenged in particular ways. I was with some other parents last night and, seeing our kids play together, one of them said "I love our people." I feel the same way. Frankly, I now find neurotypical kids kind of boring.

And also please don't think that an ASD diagnosis is going to be some kind of scarlet letter. It will unlock lots of services for your kid. It will introduce him or her to an identity and a community that the various alphabet soup diagnoses will not. The interventions, if you choose the right ones, are all functional--aimed at teaching your kid things he doesn't know or can't do. OT, PT, speech therapy. And there are Aspies at just about every elite private school anywhere, and all elite colleges.

There is a place for skepticism but acceptance is very, very important. For you and your child.


It's not ego. It's the fact that mislabeled children rarely get the help they need.

It's much, much tougher to go in and fight against the grain. It's so much easier to roll over and let them label your child with whatever suits their purpose.

[Anonymous]

Sorry, some kind of formatting glitch put my comment in the middle of the one above. Obviously I was trying to agree with the first poster.

[Anonymous]

who diagnosed your child with ASD and ADHD? Have that person put it in writing. You need to get the diagnosis changed. Check out Wrightslaw.com and arm yourself with knowledge. You have every right to get it changed.

It is in writing from three different neuro development Dr s. Each form was excluded because they don't have e to accept the outside evaluation they recommended.
I fought for the change in label but they won't do it.

[Anonymous]

Anonymous wrote:who diagnosed your child with ASD and ADHD? Have that person put it in writing. You need to get the diagnosis changed. Check out Wrightslaw.com and arm yourself with knowledge. You have every right to get it changed.

It is in writing from three different neuro development Dr s. Each form was excluded because they don't have e to accept the outside evaluation they recommended.
I fought for the change in label but they won't do it.

Yes, this sounds like the arrogance of schools. Did you get a lawyer involved? We found the school listened a lot better when they knew a lawyer was involved.

[Anonymous]

Anonymous wrote:

Anonymous wrote:who diagnosed your child with ASD and ADHD? Have that person put it in writing. You need to get the diagnosis changed. Check out Wrightslaw.com and arm yourself with knowledge. You have every right to get it changed.

It is in writing from three different neuro development Dr s. Each form was excluded because they don't have e to accept the outside evaluation they recommended.
I fought for the change in label but they won't do it.

Yes, this sounds like the arrogance of schools. Did you get a lawyer involved? We found the school listened a lot better when they knew a lawyer was involved.


How do you find an educational lawyer?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

OP, what a crock of lies you are spreading. As someone who had to fight tooth and nail to keep a false ASD diagnosis off my kid, I know it makes a huge difference if you are incorrectly labeled. I've seen it firshand.

Parents should ALWAYS insist on accurate labels, even if lazy, incompetent school personnel try to tell you otherwise. I've gotten every service we've needed AND forced them to use the correct label.

You didn't actually read any of the original post. A medical diagnosis ISN'T the same thing as a designation to receive IEP services. It's not a crock of lies; it's the law. You can receive an IEP for only the following:

• autism;
• deaf-blindness;
• deafness;
• emotional disturbance;
• hearing impairment;
• intellectual disability;
• multiple disabilities;
• orthopedic impairment;
• other health impairment;
• specific learning disability;
• speech or language impairment;
• traumatic brain injury; or
• visual impairment (including blindness).

So your child may not have autism, but unless the school can attribute one of the above 13 potential diagnoses, he won't get an IEP either. That is my point. Until the law changes and has more inclusive language, the "label" the school uses may not be accurate but will get you accommodations and services.

But honestly, PP if you've been fighting tooth and nail to keep off an ASD diagnosis from your child, my guess is you are fighting the wrong battle.

Oh no, I read your whole post the first time.

You left out Early Childhood Developmental Delay. In my state you can be under that until you are 7 years old. At 7, my son was switched to Language Impairment. Specific Learning Disability also would have worked.

I well know a medical diagnosis isn't the same as an educational label. I had multiple medical assessments of my child saying he was not autistic, but instead severely language impaired, with processing issues and learning disabilities. But school districts do whatever is easiest for them. So if they have invested their resources in an ASD program, that's where they want to throw as many kids as possible. Very few outsiders or even parents understand the difference between school labeling and medical diagnosis, though. Our school district outsources a lot of services, so to have an incorrect autism label leads to a whole lot of wasted, unhelpful therapies and approaches.

My school district personnel was also under the false assumption that Language Impairment would only get you speech therapy. They were wrong, of course; any tick of any of the categories gets you ALL the services a child needs to access the curriculum. It took a parent with guts like me to stand up to them for them to realize they weren't following the law.

I've met only one parent who was happy they accepted an ASD label for their language-impaired child. The rest curse the day they let themselves be talked into it by the schools, or even doctors who were only trying to "help" because the inflated diagnosis brought more services.

PP, I didn't leave out Developmental Delay--they will give that label to kids who start in early intervention services b/f age 3. (Read the link I provided.) A child can keep that label on their IEP until age 9. Then your kid will be given one of the 13 above labels. (My guess is that your child is younger than 9 and probably not older than Kindergarten age b/c it's relatively easy to keep off an autism label when they're young.)

So, if a child is school age and needs an IEP and has never had one, you can have all the medical documentation in the world, but they need to assign one of the 13 labels. The creation of IDEA has artificially inflated who is counted as autistic, however, it's creation has also created specific programs. There are designated publicly funded Autism and Asperger programs available in the public schools. No specific, equivalent program exists for kids with ADHD for example.

So here's where you need to take the good with the bad as it were and accept where there is overlap and commonality among children. Children on the spectrum may have difficulty in executive functioning. So will children with ADHD as well as children who have LDs related to Disorder of Written Expression--what used to be commonly called dyslexia or dysgraphia. So some kids are given "other health impairment" or "specific learning disability" but when they have more than one diagnosis, like so many kids have but may not have autism, the schools often push for the Autism label b/c it covers more than one area and since the 70s there's been concerted efforts to develop programs specifically for autism.

When you look at research methods for teaching children, the initial research may have been conducted with a certain group of children--Unstuck and On Target was developed with children on the spectrum. The Kazdin Method was developed with children who have ODD (oppositional defiant disorder), which is quite rare. However, these are best practices that can be used with pretty much any child--SN or not.

It's an imperfect, frustrating system. There was a recent post by a mom who couldn't get OT for her child with fine motor delay primarily b/c her DD's speech had improved to the point that she would not longer eligible for services. So a kid who can't hold pencil correctly can't get OT to practice b/c she doesn't fit into 1 of 13 checkboxes. That's ridiculous, but that is the system we have.

That is why I was trying to give a historical context to how we ended up with what we have. (The emphasis on autism also coincided with de-instutionalization of children, so it may explain why it was included specifically. It may have been a product of good lobbying, that's why ESRD is included in Medicare coverage. It's not the most common but a catastrophic disease.)

It was partly tongue and cheek but that is why I was encouraging parents to focus on what services their child needs and make sure that these are what gets included in the IEP regardless of what label it's under. Unfortunately the way they run meetings is that everything gets hung up on the designation b/c it's an outmoded, bureaucratic system. But again it's what we have and given the state of Congress not likely to change any time soon.

I really hope you don't know what you are talking about.

I am also fairly sure that states and LEAs can chose to use additional labels after 3.

[Anonymous]

Anonymous wrote:

Anonymous wrote: Good post OP. Parents get themselves crazy over labels, even when the label fits. The goal is the get your child the best support possible for his/her unique needs and to keep your child from turning off of school and feeling dejected. As a parent of a kid with SN I understand their initial reluctance, but I am always surprised by the parents who never get past it.

I have known parents who did not disclose anything and let their kids flounder rather than even get an IEP. I have known parents who went to great lengths to find the 1 clinician willing to call ASD ADHD. (Newsflash: many clinicians consider them on the same spectrum and ADHD does not imply higher functioning than ASD-even socially believe it or not. Many kids with ASD get the needed social skills interventions and by a certain point can function better socially than kids with ADHD who were not getting social help despite deficits).

As parents I think we need to alas ask ourselves

1.) Is my reluctance to accept a label about my child's needs or about my ego

2.) Am I doing the best I can t get my child the services he/she needs to thrive or even just manage?

3.) Am I accepting my child for who he/she is or for what his/her actual needs are?

It's not ego. It's the fact that mislabeled children rarely get the help they need.

It's much, much tougher to go in and fight against the grain. It's so much easier to roll over and let them label your child with whatever suits their purpose.

+1. I am having a lot of trouble understanding this PP who seems to think that all "services" can work for all kids no matter the actual diagnosis.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:who diagnosed your child with ASD and ADHD? Have that person put it in writing. You need to get the diagnosis changed. Check out Wrightslaw.com and arm yourself with knowledge. You have every right to get it changed.

It is in writing from three different neuro development Dr s. Each form was excluded because they don't have e to accept the outside evaluation they recommended.
I fought for the change in label but they won't do it.

Yes, this sounds like the arrogance of schools. Did you get a lawyer involved? We found the school listened a lot better when they knew a lawyer was involved.

How do you find an educational lawyer?

No, it's the law. The public schools don't have to accept any outside diagnoses made by anyone.

A lawyer is extremely expensive. Do you really want to hire one just to get "Other Health Impairment" or "Specific Learning Disorder?"

Most lawyers may consult with you for a nominal fee, but they will not review your case unless you give them a retainer, which is big bucks and in this area will run you ballpark $4,000 to $5,000 at a minimum, non-refundable. If you are hell bent on changing the designation, I'd probably go with an advocate first b/c it will be much less expensive.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:who diagnosed your child with ASD and ADHD? Have that person put it in writing. You need to get the diagnosis changed. Check out Wrightslaw.com and arm yourself with knowledge. You have every right to get it changed.

It is in writing from three different neuro development Dr s. Each form was excluded because they don't have e to accept the outside evaluation they recommended.
I fought for the change in label but they won't do it.

Yes, this sounds like the arrogance of schools. Did you get a lawyer involved? We found the school listened a lot better when they knew a lawyer was involved.

How do you find an educational lawyer?

No, it's the law. The public schools don't have to accept any outside diagnoses made by anyone.

A lawyer is extremely expensive. Do you really want to hire one just to get "Other Health Impairment" or "Specific Learning Disorder?"

Most lawyers may consult with you for a nominal fee, but they will not review your case unless you give them a retainer, which is big bucks and in this area will run you ballpark $4,000 to $5,000 at a minimum, non-refundable. If you are hell bent on changing the designation, I'd probably go with an advocate first b/c it will be much less expensive.

From WRIGHTSLAW:

"Consideration of parentally obtained evaluations by the IEP team is not discretionary, it is mandatory. 34 C.F.R. 300.503(c) ("If the parent obtains an independent educational evaluation at private expense, the results of the evaluation (1) Must be considered by the public agency in any decision made with respect to the provision of a [free appropriate public education] to the child."). (Emphasis added).

When a parent presents an independent evaluation to the school district, the IEP team is required to consider the evaluation. This does not mean that the school district must accept the findings or recommendations in the IEE. It does means that the IEP team must review the IEE, and discuss it as appropriate. In this regard, the requirements placed on school districts are fairly minimal.

However, a United States District Court in Maryland ruled that an IEP team's failure to consider the private evaluations submitted by the parents was such a serious violation of the IDEA that this alone constituted a denial of a free appropriate public education. DiBuo v. Bd. Of Educ. of Worcester County, slip no. S-01-1311 (Nov. 14, 2001).
- See more at: http://www.wrightslaw.com/info/test.iee.steedman.htm#sthash.RqEAoPGs.dpuf

[Anonymous]

Right, PP you can submit all the outside evaluations you want to the school district. As I said they don't have to accept any of the findings.

[Anonymous]

Anonymous wrote:Right, PP you can submit all the outside evaluations you want to the school district. As I said they don't have to accept any of the findings.

Then you fight. Tooth and nail.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: Good post OP. Parents get themselves crazy over labels, even when the label fits. The goal is the get your child the best support possible for his/her unique needs and to keep your child from turning off of school and feeling dejected. As a parent of a kid with SN I understand their initial reluctance, but I am always surprised by the parents who never get past it.

I have known parents who did not disclose anything and let their kids flounder rather than even get an IEP. I have known parents who went to great lengths to find the 1 clinician willing to call ASD ADHD. (Newsflash: many clinicians consider them on the same spectrum and ADHD does not imply higher functioning than ASD-even socially believe it or not. Many kids with ASD get the needed social skills interventions and by a certain point can function better socially than kids with ADHD who were not getting social help despite deficits).

As parents I think we need to alas ask ourselves

1.) Is my reluctance to accept a label about my child's needs or about my ego

2.) Am I doing the best I can t get my child the services he/she needs to thrive or even just manage?

3.) Am I accepting my child for who he/she is or for what his/her actual needs are?

It's not ego. It's the fact that mislabeled children rarely get the help they need.

It's much, much tougher to go in and fight against the grain. It's so much easier to roll over and let them label your child with whatever suits their purpose.

+1. I am having a lot of trouble understanding this PP who seems to think that all "services" can work for all kids no matter the actual diagnosis.

The pp is saying it is not worth fighting the educational label under which you get an IEP. There are 13 educational labels for obtaining an IEP + developmental delays for younger children. So all the hundreds of medical issues and diagnosis have to fit into one of those 14 categories to obtain an IEP. Obviously very few people are going to get an exact match to their diagnosis.

The whole point is to get an IEP - Individual Education Plan.

After getting an IEP, then you decide on what services and supports is needed for that particular child with the rest of the IEP team. THAT is what is worth spending your time fighting for NOT dithering over the education label that got you the IEP. The individual education plan is what determines what supports and services your child receives not the education "label". The IEP team (parents are members) comes up with the IEP not the education label.

It is very much worth the expense of hiring an educational consultant/dev ped/neuropsych to help you get your child the best IEP possible and since most parents have zero experience with IEPs hire an expert to help you ... And make sure that the IEP is followed.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Right, PP you can submit all the outside evaluations you want to the school district. As I said they don't have to accept any of the findings.

Then you fight. Tooth and nail.

Since you think its that simple, please help the rest of us. Since it shouldn't take more than a few hours as it is so so simple, I'm sure you'd volunteer your time.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote: Good post OP. Parents get themselves crazy over labels, even when the label fits. The goal is the get your child the best support possible for his/her unique needs and to keep your child from turning off of school and feeling dejected. As a parent of a kid with SN I understand their initial reluctance, but I am always surprised by the parents who never get past it.

I have known parents who did not disclose anything and let their kids flounder rather than even get an IEP. I have known parents who went to great lengths to find the 1 clinician willing to call ASD ADHD. (Newsflash: many clinicians consider them on the same spectrum and ADHD does not imply higher functioning than ASD-even socially believe it or not. Many kids with ASD get the needed social skills interventions and by a certain point can function better socially than kids with ADHD who were not getting social help despite deficits).

As parents I think we need to alas ask ourselves

1.) Is my reluctance to accept a label about my child's needs or about my ego

2.) Am I doing the best I can t get my child the services he/she needs to thrive or even just manage?

3.) Am I accepting my child for who he/she is or for what his/her actual needs are?

It's not ego. It's the fact that mislabeled children rarely get the help they need.

It's much, much tougher to go in and fight against the grain. It's so much easier to roll over and let them label your child with whatever suits their purpose.

+1. I am having a lot of trouble understanding this PP who seems to think that all "services" can work for all kids no matter the actual diagnosis.

The pp is saying it is not worth fighting the educational label under which you get an IEP. There are 13 educational labels for obtaining an IEP + developmental delays for younger children. So all the hundreds of medical issues and diagnosis have to fit into one of those 14 categories to obtain an IEP. Obviously very few people are going to get an exact match to their diagnosis.

The whole point is to get an IEP - Individual Education Plan.

After getting an IEP, then you decide on what services and supports is needed for that particular child with the rest of the IEP team. THAT is what is worth spending your time fighting for NOT dithering over the education label that got you the IEP. The individual education plan is what determines what supports and services your child receives not the education "label". The IEP team (parents are members) comes up with the IEP not the education label.

It is very much worth the expense of hiring an educational consultant/dev ped/neuropsych to help you get your child the best IEP possible and since most parents have zero experience with IEPs hire an expert to help you ... And make sure that the IEP is followed.

Not everyone can afford the expense of a lawyer or advocate. For us, by the time we paid for an advocate, we might as well pay for private school and services, which is what we did (our insurance picks up most of the expense and co-pays are reasonable). If I spent $6 on an advocate and a small private, which gives my child a very small class size and personal attention is only $12, sadly its not worth the fight. (we are lucky that is an option for us).

The label is important. You can argue its not, but you have never been in some of our situations where it has impacted our kids. I was pushed to ABA rather than intensive speech. Did it for a few months to cooperate and realized it was a waste and went back to intensive speech. I'm too tired from all the running, tutoring my child, etc. to want to take on another fight with people who barely know my child.

[Anonymous]

Also, if your child is not receiving the "correct" services, ask for an IEP meeting and correct it. You have to sign off on the IEP. YOU are a member of the IEP team and you don't have to take any services you don't want.