Autism Spectrum Disorder changes . . .How will it affect us? - Mothering Forums
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#1 of 18 Old 08-04-2010, 06:07 PM - Thread Starter
 
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We have not been officially diagnosed on the spectrum, but will hear the results of our evaluation tomorrow. But I know that Aspergers and PDD-NOS will be removed and everything with be diagnosed as on the spectrum. How does this change IEPs and services? What will happen to those kids with a PDD-NOS or Asperger's diagnosis? Thanks.

Ds - 2002 High Functioning Autism
Dd - 2004 6 going on 13
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#2 of 18 Old 08-04-2010, 06:42 PM
 
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Originally Posted by Tinkerszs View Post
We have not been officially diagnosed on the spectrum, but will hear the results of our evaluation tomorrow. But I know that Aspergers and PDD-NOS will be removed and everything with be diagnosed as on the spectrum. How does this change IEPs and services? What will happen to those kids with a PDD-NOS or Asperger's diagnosis? Thanks.
My DD's dx says "Asperger's -- Autism spectrum disorder" so I can't see that it will make any difference for us at all.

but everything has pros and cons  shrug.gif

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#3 of 18 Old 08-04-2010, 11:34 PM
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From what I understand, the dx will just be changed to Autism Spectrum Disorder and then clarified by Severe, Moderate, Mild, Subclinical.

It shouldn't change your IEP. In fact, I think it will help kids with that pesky PDD-NOS dx get services/insurance coverage more easily. Now if they would just include SPD...
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#4 of 18 Old 08-05-2010, 01:29 AM
 
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Now if they would just include SPD...
AGREED!!!!

My DD's biggest issues with school are related to her sensory issues, and without her ASD, she wouldn't get any special services at all. Not one little thing.

but everything has pros and cons  shrug.gif

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#5 of 18 Old 08-05-2010, 04:03 AM
 
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I don't know... My ds was diagnosed with "Autism Disorder." But he is awfully high functioning (not to say we don't have our moments ), and our autism doc and I both hope he will "age out" of the diagnosis.

Laura, mama to J (11), N (8),E (5) , and M (2). Baby #5 expected in Dec 2010!
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#6 of 18 Old 08-05-2010, 09:33 AM
 
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Changes to the DSM should not affect IEPs. IEPs are based on an educational classification, not a medical diagnosis, although some school districts (mistakenly) require a medical diagnosis to get an educational classification. Aspergers and PDD-NOS are not educational classifications under IDEA (there are a limited number of possible educational classifications). So if a child has a medical diagnosis of Aspergers or PDD-NOS and needs special ed services, that child will have an educational classification of something else. Possible educational classifications for such a child might be:

-Autism
-Language Impairment
-Specific Learning Disability
-Developemental Delay/Preschool Child with a Disability (some states allow this classifiaction for very young children)


So changes to the DSM should not cause changes to IEPs. (I say should, because sadly not all districts follow the law.)

For several years, my son's medical diagnosis was PDD-NOS. As a preschooler his educational classifiaction was "Preschool Child with a Disability" (in my state, all special education students under age 5 get this classification). When he transitioned to Kindy, his classifcation was changed to "Autism". (Over the summer, his official medical diagnosis was changed to Autistic Disorder.)

Lolly
Mom to an amazing little guy, age 9 (Autism, Hyperlexia, Dyspraxia, Albinism, Chromosome Microdeletion)

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#7 of 18 Old 08-05-2010, 01:12 PM
 
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Its not getting removed, just reclassified. (and its only proposed at this point as far as I can tell) Meaning it will just fall under a different name. Either way, the services you get via your IEP will not change.
http://www.dsm5.org/ProposedRevision...olescence.aspx

I'm up inthe air about how I feel about all this, in some ways its good and in some ways its bad. I'm torn.

Mom to Joscelyne 14, Andrew 12, and Mackenzie 10 and wife to Nate.
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#8 of 18 Old 08-06-2010, 08:01 PM - Thread Starter
 
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He was diagnosed yesterday with Autism so I guess my question doesn't matter much.

Now to get past the intial stage of grief and shock.

Ds - 2002 High Functioning Autism
Dd - 2004 6 going on 13
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#9 of 18 Old 08-06-2010, 09:48 PM
 
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He was diagnosed yesterday with Autism so I guess my question doesn't matter much.

Now to get past the intial stage of grief and shock.
Thinking of you. It does get easier.

I have a friend whose older kiddo has a PDD-NOS diagnosis and the younger one got autism, but she says they really look the same to her -- just a different person evaluating on a different day can make the difference.
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#10 of 18 Old 08-06-2010, 10:07 PM
 
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Thinking of you. It does get easier.

I have a friend whose older kiddo has a PDD-NOS diagnosis and the younger one got autism, but she says they really look the same to her -- just a different person evaluating on a different day can make the difference.
That's exactly right. I've known children to be diagnosed as autistic by one clinician and PDD by another and not on the spectrum by another. There's still a lot of work to be done to standardize it.

And the diagnosis/severity can change as the child ages and has interventions. At 2 1/2 years old, my son tested at severely autistic. He had every classic symptom, from nonverbal, to all sorts of stims, to self injury, to the social skills that tested at 0-3 months old. At 6 1/2, he has now officially been reclassified as having Moderately-High Gifted (with ironically enough, his highest scores in verbal ability) with Asperger's. He's had a ton of therapy/interventions, has progressed at a remarkable rate, and according to his school district of residence, he will likely lose his intensive IEP in 2-3 years and require only minimal supports if he continues to progress at this rate (his school district only sees him once a year because he's out of district at a private school, and so they only see his annual testing, quarterly reports from his school, and twice yearly in-person observations, so ultimately, his IEP is dependent on when/if his therapist of 5 years discharges him.)

So you never know... If you would have seen DS 4 years ago, you would have assumed he would be in a special needs program and forever non-verbal...now he's in a mainstream school without an aid and is a walking encyclopedia. :

~Brandon Michael (11/23/03), Jocelyn Lily Nữ (2/4/07, adopted 5/28/07 from Vietnam), Amelia Rylie (1/14/09), & Ryland Josef William (9/7/05-9/7/05 @ 41 wks). 
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#11 of 18 Old 08-06-2010, 10:46 PM
 
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Just a month ago, I was where you are. *hug* I was surprised that the person who delivered my son's diagnosis was so *sure* it was "autism" and not PDD or Aspergers. Now, I have several more thoughts about it.. one, providers seem to be moving more to the autism diagnosis because of the upcoming changes with taking out PDD/Aspergers.. two, a diagnosis of "autism" will sometimes get you more help/services than PDD.. three, no one knows how far our kids can and will go, not the providers and not us..

There is help and there is hope. Autism can be treated.

What you are feeling is normal and felt by so many parents of children on the spectrum. Be kind to you. It's a grieving process, and a boat you are not alone in.. I for one am in it with you.

*huge hug*
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#12 of 18 Old 08-07-2010, 01:50 AM
 
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Originally Posted by Tinkerszs View Post
He was diagnosed yesterday with Autism so I guess my question doesn't matter much.

Now to get past the intial stage of grief and shock.


What are you reading right now? I really like books by Temple Grandin. She is so up beat about what it means to have autism.

but everything has pros and cons  shrug.gif

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#13 of 18 Old 08-07-2010, 11:48 AM
 
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Originally Posted by Tinkerszs View Post
He was diagnosed yesterday with Autism so I guess my question doesn't matter much.

Now to get past the intial stage of grief and shock.

Laura, mama to J (11), N (8),E (5) , and M (2). Baby #5 expected in Dec 2010!
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#14 of 18 Old 08-07-2010, 02:53 PM
 
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i think the stages of grief go all kinds of ways. i'll be honest and say that i still grieve a year after her diagnosis. it's so corny when people say, "it's not a sprint. it's a marathon." - BUT it's true. there are days when i feel like my daughter and i can conquer the world, and there are days when i feel like getting out of bed is too damn hard. the reality, like people say over and over, is that your little one has NOT changed because there are new letters on his medical chart. trying to see him through a lens of asd, but not ONLY through asd eyes (if that makes sense) is a tough balancing act.
i often think of autism as a different language. my daughter needs me to learn a language i never knew before, and it's also my job to teach other people her language, as much as i can.
i definitely think reaching out to others who understand is incredibly helpful. we're less likely to try to minimize your experience, you don't have to explain everything, etc. please use this space to really vent - be sad, be pissed off, be whatever you need to be. almost all of us have been there, and we understand sometimes it's just not easy.
and as far as the specific labels (aspergers vs. pdd vs. autism), i hope you don't get caught up in the name. i know kids who are all over all of those labels, and i've learned they certainly don't define, explain, or limit anyone.
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#15 of 18 Old 08-07-2010, 04:00 PM
 
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Originally Posted by Tinkerszs View Post
He was diagnosed yesterday with Autism so I guess my question doesn't matter much.

Now to get past the intial stage of grief and shock.
Time helps. It's this part that is the hardest.

Rachelle, mommy to 8 year old boys! 

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#16 of 18 Old 08-08-2010, 07:12 PM - Thread Starter
 
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Thank you. The grieving is there. As is the anger. He's 7 and has had so many problems. He was on an IEP in preschool and they should have known. They just kept telling me he was naughty and too smart to be that naughty. If we had known before I just think to what he could be doing. He is classified as high functioning, but it's Autism because of his language delay as a toddler. Right now I am not reading anything.

Ds - 2002 High Functioning Autism
Dd - 2004 6 going on 13
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#17 of 18 Old 08-09-2010, 01:43 PM
 
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Originally Posted by Tinkerszs View Post
Thank you. The grieving is there. As is the anger. He's 7 and has had so many problems. He was on an IEP in preschool and they should have known. They just kept telling me he was naughty and too smart to be that naughty. If we had known before I just think to what he could be doing. He is classified as high functioning, but it's Autism because of his language delay as a toddler. Right now I am not reading anything.
Unless a child is non-verbal they usually don't start looking into a dx until school age (5-6 years) so the preschool not "catching" it is pretty normal. I had a teacher tell me my son was just defiant, totally ticked me off. This is a child who will NOT break a rule for any reason if he KNOWs the rule... his defiance was simply her not having patience to explain things to him and his inability to self-calm.

Mom to Joscelyne 14, Andrew 12, and Mackenzie 10 and wife to Nate.
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#18 of 18 Old 08-09-2010, 01:54 PM
 
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Hugs. It's hard getting the diagnosis at first. Is there a good autism support group in your area? I have found ours to be a tremendous help. From other parents in my area I have learned about doctors, therapists, working with the school, special events for families with autism, local resources, etc. And they have been wonderful to just talk to when I've needed that.

Autism Speaks publishes a kit for the first 100 days after diagnosis. You can download it from their website or request a hardcopy be sent to you.
http://www.autismspeaks.org/communit...00_day_kit.php

Lolly
Mom to an amazing little guy, age 9 (Autism, Hyperlexia, Dyspraxia, Albinism, Chromosome Microdeletion)

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