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PPS says child is "special" but doctors do not: what?

So, we haven't officially launched the "community" function of the site, but we are glad you are using it!  A mama recently posted there, and we thought we'd better post her question on the front page to see if someone can lend some insight:

Anyone had the experience of Portland Public Schools Early Intervention diagnosing your little on the Autism Spectrum, but your Pediatrician, Ped Neurologist, Occupational Therapist, Speech Therapist, and Ped Behaviorist all disagree, and say no Autism, no Asperger, no Spectrum?  I'm totally confused and baffled.  I didn’t want to sign their evaluation, but I did.  Am I being a baby and not dealing with reality of labels?  Any words of wisdom would be welcome. Thanks!

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Is your child "high spirited?" I'm wondering if it's the schools way of insisting/requiring the child be on meds of some sort as behavior control.

The educational diagnosis is very different than a medical one. Since the educational is different than the medical it can often leave schools vs. the medical community at different opinions. You don't have to agree or sign, but you have to have a reevaluation every three years so if your child really isn't on the spectrum likely you won't qualify for services at the next evaluation. Some school services are only available for kids who qualify with an educational diagnosis, so if your child needs the services that's how to get them. On the flip side, some people get a medical diagnosis and the school doesn't agree and the child doesn't meet the educational diagnostics. It can be very confusing.

There is a special education PTA in PPS called SEPTAP and you should consider joining/going to meetings. It can be helpful to meet parents with older kids who have been in your situation.

My son is on the spectrum as well so if you'd like to chat off line let me know. I'm happy to share info if it helps.

BTW, what age is your child? I actually had the opposite where early intervention kept telling me my child was NOT on the spectrum and he is, so sometimes with younger kids it's hard to get everyone to agree.

We are going through something similar as well. I would go with the majority rule on this one, and maybe have another meeting with PPS? I don't know. We are just starting down this path, and are trying to figure out if it's a SPD, or if he's "spirited" or a combo. Good luck.

As critical as I am of PPS, the EI team is actually great, and I highly doubt they'd suggest meds for a young child who is potentially on the spectrum. The "spirited" thing is often pretty over blown because parents have a hard time accepting that their child might actually be on the spectrum. I also think that if they think the child is on the spectrum it's very likely that he is. A medical diagnosis is harder to get than an educational one. And perhaps they're not saying (medically) that the child is on the spectrum because it's too early to tell officially. It took us from age 2 to 4 (i.e. two years) to get everyone on the same page with my child. I've found that many in the medical community are still holding strong to more rigid diagnostic standards such as--the child has joint attention--can't be autistic. Or the child is friendly with adults--can't be autistic. Or talks, or is social, or understands emotions, or is affectionate or any of the other stereotypes that people on the spectrum aren't supposed to "get or be." However, my kid had/did all of these and he's still on the spectrum, it just took him growing up some to really see, especially when you see him with peers. And our OT still doesn't think he is--she says he has language processing and a regulatory disorder, along with non verbal learning disorder. Fact is that all of those basically add up to autism, particularly when you're in an educational situation. So many high functioning kids don't get a diagnosis for a while but the schools might pick it up sooner, or at least EI.

What gets tricky in these situations is exactly that: when children are difficult to figure out, the school and medical professionals (OT, SLP, Psych, Dev. MD) disagree. In my professional experience, I tell families that if they feel their child could benefit from services in the school setting, by all means use whatever label seems appropriate. It may not be ASD, it might be Communication Disorder, maybe Other Health Impairment, maybe Learning Disability. From my knowledge of the schools, the ASD label is like playing the "trump card"--you get any services your child needs. That being said, I would not sign anything you feel uncomfortable with. You know your child best, of course you want them to receive the help they need, and you have every right to agree/disagree with their findings. I agree with the other posters. I would ask for another meeting with your team and make sure your outside therapists and MD's chime in on the strengths and needs of your child. Good luck!

BTW, when EI diagnosis a child it's not just one or two people deciding the child is on the spectrum, it's actually a full process of evaluation, etc. I just had my youngest evaluated because my older child is on the spectrum, and while I don't think she is I wanted a second opinion just in case (she's not). I trust their process and found it pretty intuitive and thorough. I know that when I was first going through it with my son though it was really hard to understand how it all worked, know who to trust, I didn't want to accept that my child wasn't just "unique" he had actual problems, etc. I also read the Spirited Child and think it's a nice book but it really doesn't address the fact that holding onto a theory like that rather than going at the issue full force can actually do your child a disservice. If there's ANY question about a child being on the spectrum, treat it as if the child really is because it's not a label that hurts, it's the time lost if the child is in need of help. The earlier the better and the more services the better while kids are young. Worrying about a label not being correct or wanting to err on the side of it "just" being SPD or being spirited is potentially making your child miss out on badly needed services that will help for the future. Being on the spectrum really isn't the end of the world. But worrying about a label or hoping it's not autism can really hurt a child long term if services are needed. I look back and wish I'd done more when my child was under five and spent less time worrying about "what if."

This is a confusing situation and can be a tricky part of the school learning curve! I have had a similar experience with my son re: ADHD concerns and my son is now in 3rd grade. What I have learned is that labels are not necessary for a child to be successful in school and get their needs met but that a diagnosis is needed if a child is to recieve school funded classroom / learning supports.

My son's grades are not significantly impacted and he has met or exceeded his milestones every year so he would not qualify for supports even though the school believes he meets clinical ranges. Something I've found useful has been to get to know about the teachers of the different grades/their styles and philosophies and write letters each spring requesting the teacher you think will be the best fit for your little one. I've also found that allergies (which I learned last year my son had) can mimic different symptoms so I've worked very closely with a naturopath who is experienced in periatrics and w/ conflicting adhd or autism questions-no diagnosis needed.

Most of all, do trust and be gentle with yourself and trust your ability to meet your child and your family's needs! If there isn't clear agreement that a child has a diagnosis then it's worth it to consider (throughout the years even) whether or not it will significantly benefit a child's quality of learning or of life. I'm also happy to post the naturopath's info if anyone wants it!

Hope that helps...take good care!
Angela

It's distressing, but if a child does have autism the window of time when interventions have the greatest impact is relatively brief. Research indicates that the greatest gains can be made before the child hits the age of seven. That's not to say that children and adults don't continue to grow and change and make gains, but those gains are slower and require more effort and more interventions as the child grows. If your child may be on the spectrum, I'd advise you to be open to making the most of every opportunity for free or low-cost research-based interventions that you can while he or she is young.

Wow, I can't believe the timing of this post. I am going tomorrow morning for my meeting with the EI team to hear their final report on my child. Just hearing different experiences is soooooo helpful to me . . . . Please keep them coming!

Angela, who is the naturopath you have worked with? My child has allergies too, and I really wonder how much they mimic/mask other issues.

S-
The naturopath is Dr. Andrew Kim and his office is in Multomah Village in SW Portland...here is the link:
http://www.naturaltraditionsportland.com/

I highly recommend him! He works cooperatively with my son and I, we get a whole hour with him to discuss nutrition, supplements, and ways to help kids feel more comfortable with how their chemistry works and how this relates to the school setting. My son does not like to feel like he's in the spotlight usually but, after his appointments, he just seemed to feel more confident and in control of how his body and mind work and about the changes we've made to his diet.
Best wishes for your meeting tomorrow!

I agree with lots of posters above -- the EI team is great, and if you think your child might benefit from services like speech therapy, occupational therapy, or extra support in the classroom, there is no harm in trying it out. Your child will have to be re-evaluated at age 5 anyway to see if he or she still qualifies for services.

PPS uses different diagnostic criteria than MDs use. The state of Oregon actually has one of the most generous systems for educational evaluations of ASD in the country — which means the criteria are more lenient, and more likely to catch 'borderline' cases or kids who would not be diagnosed in another state or by an MD. It also means it's possible that some kids might get an educational assessment at age 3 and then "test out" of special ed in a few years. But autism is a collection of described behaviors, and depending on who is doing the describing, it looks different to different people — there's no lab test to give you a definitive yes or no.

A great site for autism information is The Thinking Person's Guide to Autism: http://thinkingautismguide.blogspot.com/

I do not have much advise for you on autism but my son has been going to PRIDE for Kids in Van WA for speech therapy for the past 5 months and has had amazing progress. He qualified for IE services in July. They deal with all kinds of disabilities at PRIDE. http://www.arcofclarkcounty.org/children-families/pride-for-kids I know this is Vancouver but they may have some helpful resources. They have a Parent Coalition who's purpose is to help parents with children of disabilities navigate the the system and work with the school district. Pride used to be a program for birth to 3 but now takes kids up to 5. We started with them through the county/state but have continued privately. He is now out of the state EI program, and now under the school district. For us visits to pride are covered by our health insurance. They are set up like a clinic and bill insurance. My son is 3 and in the school district (battle ground WA) preschool program. It is great but NO comparison to what we have received through Pride. PRIDE stands for Parents Receiving Intensive Developmental Education. And it is SO true. The best thing we can do for our kids is educate our selfs. They have given us tools and skills we never would have learned on our own. They believe parents are the best teachers. The "school" (which again is great) has given us nothing in the way of working with our son at home. I keep asking if there is something we should be doing at home. They tell me no. (not true) "labels" are scary. Our Speech-Language Pathologist helped us decide it we wanted to continue to receive services through the school district. Because he would start out with a label. Labels do exactly that they label your child. It's hard to have them start out that way but I agree with others if they are saying he qualifies for service that there may be something there and take the help you can get now. Just educate educate educate yourself. Do not do anything you do not want to do. Stand up for your rights and your child's rights. Educate yourself as much as you can. Darla Helt is the Parent coalition coordinator at pride. her phone number is 360 eight two three 2247 direct. and her email is dariah at arcofclarkcounty dot org I have no idea if there is an Portland side of pride or something like it but if not It would be worth the trip across the river. They also have different support groups for parents too. Good luck!

I agree with everything other posters have said about the EI team. they're fantastic and caring and truly committed to making sure the "labels" and services work together for the child's best interests. and please do not feel that the labels, ummm, how do I say this: matter? should change your parenting? will affect your child's future? the labels are just words on a page that open doors for funding and services that will almost certainly benefit your child and, most importantly, YOU.

I am in (if you can characterize it as such) the "opposite" situation. I sought to get my son, Truman, an educational ASD diagnosis before he entered kindergarten. he had been diagnosed for speech delay at three and had been in a MESD preschool -- 2.25 hours, 3 days a week, 1:4 teacher:student ratio -- since that age. when it came time to fill out the forms everyone agreed (but me) that his idiosyncrasies, much as they did remind one of an Asperger's kid, weren't hampering him in the educational setting at all. surprise, surprise, when he got to five-days-a-week, full-day kindergarten, his idiosyncrasies became a major problem. his teacher is phenomenal, his class only has 18 kids, and I have to pick him up because of his meltdowns a few times a month; there are some days when I've been encouraged to just keep him at home "to rest" for a day (I happily oblige). he's rigid, he is impossible to communicate with when he's focused in his zone, he won't follow directions except when he loves the directions (although he refuses in the sweetest way possible), he can't be assessed in several subjects even though he grasps the concepts better than most second graders, he disrupts the class, he touches people inappropriately, he trusts strangers far too much.

anyway, I requested we re-do the assessment in December and it should be completed by next week or so. I suspect this time he'll be either ASD or SPD or something. I doubt he'd be called ASD by a doctor, either, due to his adorably charming social self (who will go up to a complete stranger and hug him or ask for him to share his lunch).

want to know which label to avoid? oppositional defiant disorder. that basically just says "your child doesn't follow my instructions," but says it in a way that will instantly color a prospective teacher or administrator's view of him. another topic perhaps...

Oh mama's thank you so much, I feel your compassion, empathy and strength. Your posts and insight mean a lot to me as I sit here typing in my cube at work.

Logan turned four last fall. We've been in private speech therapy and occupational therapy for awhile, and will continue to do so going forward, we see progress each week. I’d rather continue paying out of pocket for the therapies, than walk around with the ASD label to get free services, maybe I’m being stubborn, and I’m starting to think I’m on the spectrum as well. But, I was in those play groups where the mothers sat around fretting about ASD, it was horrible, I saw the looks of dread on their faces.

As an Urban Planner myself, we moved specifically to PDX's NE neighborhood with an average school, wanting to make a difference, and change the school, make it better. But, now I’m not sure I want to even deal with PPS. I’ve been looking at some traditional private pre-schools on the west side and excited by Cedarwood as well, although I wonder about the lack of structure. EI did suggest Building Bridges; we’re going to check them out on Friday. I'm thinking they may help him with his peer interaction, get him ready for the fall.

Recently Logan has started asking adults to relay his questions to his peers, where in the past he would to talk to them directly. I took that because last summer we’ve pulled him from a full time daycare to being home all day with a nanny and just recently started Portland Parks and Rec preschool two afternoons a week – where there are only two other students, both girls. Good luck breaking up that pair with your rocket-ships and astronauts. When EI observed him at preschool they said he didn’t know how to interact with the girls, so therefore he is on the spectrum. I’ve been told I’m making excuses for Logan, but I’m just pointing out other points of view. Believe me if the medical community diagnosed him, I would have no problem accepting it. We’ve been continually asking the doctors about this for the last two years. Two other daycare providers have come to us with concerns (first when he was 2 ½ and then again from another at 3 ½) and the doctors and therapists have dismissed their concerns.

Today, right here and now I'm working on finding peace between the educational diagnosis and the lack of diagnosis from his medical team. Although I did just make a follow up appointment with his neurologist, and am now waiting to get an appointment at OHSU Autism Center. I have the feeling they will never be on the same page.

Our boy is a bright and shining star who brings us laughter and tenderness each and every day. He is a pleasure to be around and we enjoy experiencing the world through his eyes. What more can I say, we’re lucky to have him in our lives, and just want him to have the best experience possible.

Thanks again.

Hmm...how to say this without seeming rude....
You commented about playgroup and the parents all acting like ASD is this horrible thing, well, that's because of ignorance. The spectrum is huge and it's not always or usually awful, it's just a bit different. And what your saying is kind of like what you describe them doing--you're doing your best to suggest that your child, being "a bright and shining star" can't be on the spectrum. My child is bright and shining, social, friendly, smart, and yes, on the spectrum. If you met him you probably wouldn't realize he was either. You don't have to "look" impaired to have a disability. PLEASE PLEASE PLEASE don't let your fears prevent you from accepting that he may indeed be on the spectrum or not accept free therapy. It really could be detrimental to your child. Keep in mind also that private schools don't have to accept ASD kids so avoiding the school district is not always possible.
I realize it's hard to accept that your child may have a disability because I've been there, but again, once you move past it you realize that normal is just what you live with, there is no "ONE" normal and if you met my child you'd probably think he WAS pretty normal, because he is, but he's also on the spectrum. High functioning kids are at risk for all sorts of long term problems and learning disabilities if they don't get the services they need early on, as well as taking a major hit to their self esteem.

If not one but two providers have expressed concerns to you then I'm really not sure what the combo of the providers AND EI, is preventing you from accepting this situation may be accurate. Daycare providers and EI are way more likely to diagnose your child early than a medical provider due to the actual day to day interactions they're seeing. And sorry, not being able to interact with the girls is not because he has been home from full time care for a while. It's simply, not typical. Typical kids don't do that. That behavior is definitely a red flag and making excuses doesn't make it go away.

My provider told us when my son was 15 months old that she couldn't care for him anymore and that she was concerned with his development. We dismissed her concerns. At four, when we finally started getting people to agree that he might be on the spectrum, I looked back and thought about what an idiot I was for letting my "pride" prevent me from looking at the situation clearly. Sometimes it's hard to recognize that our child's disability is not about us. Please, please let EI and others work with him. The label goes away if it's not real. It doesn't follow forever. It doesn't automatically get you placed in special education classes for Kindergarten, etc. I forget the number but only something like 18% of kids with IEPs actually are in special ed settings. The rest are in regular classes with their peers. On the flip side, if he is on the spectrum and you ignore all of this and wait until K, his first school introduction will be stressful, and possibly full of failure and that's really not fair to him.

I'd suggest getting out there and meeting some people who have ASD kids. The people you see on TV crying over their severely impaired ASD child are not typical. Don't use that as your reference point.

JC - you could not have said it any better and I completely agree!

Logan's mom - please understand that the educators in your child's life have seen him struggle, for whatever reason, and want him to get the resources he needs to have an easier time! It is wonderful to hear that you will continue with therapy on your own but also consider that accepting a "label" to see that run its course may also give you lots of wonderful ideas and options - from speech therapy to nutrition. As an early childhood educator myself, I knew a very young child - one year old in fact, that came to our school already diagnosed with autism. They had him in speech, occupational, social therapies, in music classes and gymnastics, and on a very strict diet including no gluten, dairy, sugars, artificial colors, etc., and the progress he made in a year was PHENOMENAL!
And if your child ends up not being on the spectrum, none of these therapies could be detrimental. They could only be beneficial! Good luck to you and Logan as you navigate the maze to what is in his best interest.

It can't hurt to go through the evaluation process. After the results are in, you have the option to sign that you agree or disagree with the overall findings and labels. You also have the right to accept the proposed services and you can revoke consent for services at any time. Lots of times parents have a student evaluated for free by the district and then seek private therapies rather than through the school system. Should you decide to have services provided later on, you can always request a new evaluation. Honestly, the schools aren't out to get anyone. They actually do want to help students to be successful.

To echo what others have said.....if there is a chance a child has autism early intervention is critical. I have taught early intervention and worked as a counselor in a school with elementary aged children on the spectrum. On a personal note, my dearest friend who lives in NJ had a son and before he was a year had a feeling something was wrong. Her pediatrician thought everything was "fine" as did her husband and entire family. My friend continued to know something was wring and when her son was about 15 mos took him to a developmental pediatrician outside of Philly and had him evaluated by ei team with dx of high functioning autism. He was taken off all dairy and began receiving services. His progress has been amazing and he is now six years old in mainstream kindergarten with no special services or eligibility. Developmental pediatrician actually gave him dx of high functioning autism, currently resolved which she acknowledged is controversial but she feels accurate. My point is that there really is a critical window, and that there seem to be more cons to not getting the services. If a child needs services and doesn't get them, there are potentially lifelong consequences. I know I am all over map here but also wanted to share that in my work in special Ed setting I sat in on A LOT of eligibility meetings....at elementary level, not early childhood but,...I think disagreement among professionals is common. It is not an exact science and young children are still developing and changing. I know I would not put
Much stock in what my ped would say about such a matter even though I think she is twri

Logan's mom--you also said that you think your team (med and educational) may never be on the same page....

Actually, what may finally make everyone be ON the same page is peer interaction. It's really hard to evaluate kids socially when adults are the evaluators. Many HF/Asperger kids are at their best one on one with adults as that is their ideal audience. Adults are more predictable than kids. It's not until people (and usually educators) see some of the HF kids with their peers that the ASD really shines through, and the older they get the more so.

I would like to hear more (and maybe links to more resources) about high functioning ASD kids and parents' experiences. My child did end up receiving an ASD diagnosis yesterday from MESD. Frankly, I am all for the services, but not yet sure how I feel about the actual diagnosis. I think a lot of this has to do with my ignorance about the full spectrum of autism. I have looked for some resources online, but most of what I see is about kids who have language delays (moderate to severe) and are extremely withdrawing. Not to minimize those experiences, but my child is a lot like JC's -- you probably wouldn't know that anything is different about him if you saw him on the playground.

Does anyone know of resources that target high functioning children?

Go to aspergersnet.org and join the message board. It's full of parents with HF/AS kids and there is lots of advice and experience to be found! One warning--they'll actually call you and confirm you're a parent before allowing you to join because it's supposed to be for parents only. That freaked me out a bit when I first joined but now I understand why as it's to make sure it stays a place where parents feel they can talk freely without finding out their child's teacher is a member or something!
There's also a caregiver support group that is mostly full of parents new to ASD that meets at Kaiser Interstate. You can find info about the group on the board as well. I'll look for the actual link.

Does anyone have a recommendation for a barber - for children with similar symptoms you are discussing. Thank you.

Tammy at Kuts for Kids and Adults is incredibly patient and understanding. She has cut the hair of many ASD kids and is really easy to work with. She successfully desensitized my son to using clippers on his head as well which was great. It's in SE on Hawthorne.

Here's the caregiver support info:
ASD Caregivers Support Group *Date:**Sunday February 13, 2011* *Time:**6:30
pm - 8:00 pm*
*Location:*Kaiser Permanente's Town Hall *Street:*3704 N.
Interstate Ave. *City/State/Zip:*Portland, OR 97217 *Phone:*503-283-5513 This
meeting is for any parent/grandparent/guardian of an ASD child. This is a
private time where we can share our feelings, frustrations, and concerns
with other adults who are going on the same journey. Each person will have
uninterrupted time to talk without the worry of judgment or criticism
(including well-intended advice). The meeting is free.

No food or drink will be served. Please do not bring children.
Kleenex and undivided attention provided.

Hi S, regarding resources for children that have high-functioning Autism or Asperger's but have strong formal language skills, you might find Michelle Winner's website informative. Many children on the spectrum have sound functioning in academic and even in many social situations, but miss some of the subtle social nuances. They can feel left out, or like there is something "wrong" with them because they don't always "get it."

Socialthinking.com

Much of it is for school-age and older students, but you get good information about her social-thinking approach. She usually gets to our area yearly. She's an SLP who has devoted her life to helping HFA kids.

Many good posts above. I'm glad many of you find your experiences with PPS early childhood evaluation positive.

My son is in the same category. He qualified in MESD under an ASD diagnosis after already being in EI services for Speech Delay. My husband and I were really confused at first, especially b/c I'm a doctor and I was looking at it from the medical side.

The problem with the "educational" labels is that they only have a short list of labels, so there are TONS of kids who don't actually have those "disorders" who qualify under those labels. We see one of the best Developmental Pediatricians in the state, and he doesn't think our son is on "the spectrum". We've decided it doesn't matter. Sure, it's annoying when people ask you "what your kid has". But I just answer, "He has a communication disorder. He has trouble processing information that comes to him verbally and interacting socially." That usually suffices. It's not that I don't want to call it ASD and it actually is (I was the one who pushed for the ASD evaluation by MESD). I just think a lot of us have kids with varying degrees of communication, processing, neurodevelopmental issues, label soup if you will. And our medical world doesn't quite understand it all.

A very good Speech Path once gave me very good advice: "I'm not really concerned about what label your son has. We just need to address your concerns and treat his communication issues. It doesn't matter what you call them, the therapy is the same."

Unfortunately, that isn't true for Special Ed. It DOES matter what you call them, and the labels are broad. Just be reassured that people in the public school system know the difference between a medical diagnosis and an educational eligibility. And without that eligibility, you don't have anyone to back you up when you try to make sure a teacher accommodates your child's classroom needs so he/she can have the best opportunity to learn with his/her peers.

Suggestions for resources:
1. The Artz Center in Beaverton (private therapy)
2. FACT of Oregon (parent resources)
3. Book: "When the Labels Don't Fit" (can't remember the author, sorry)

Getting to this late but the focus of an educational diagnosis is different: it's not about labeling your kid as much as identifying stuff that might cause him to have trouble in the classroom. The label suggests what kind of approach they'll take to the challenges.

Other kinds of practitioners have different diagnostic agendas that may or may not have anything to do with how your kid functions in school, life, etc. So "not autistic" to them might mean "doesn't withdraw or have repetitive behaviors" and the fact that a kid can't handle music class without freaking out about the noise might be irrelevant in their view.

Autism is not the end of the world. My son was medically diagnosed at age 7. He did not receive an educational diagnoses tell he was 8. EI was pretty useless for us they only would address his speech. People need to quit fearing Autism it makes for some really remarkable people. However pps sucks for special ed move if u can!

I don't believe in putting labels either. However, it is a reality that we have to face. It is not about your disability; it is about your talent inspite of you being challenged.

My experience has been that PPS is quite label-happy and any time a kid isn't a docile, placid zombie they're mighty quick to diagnose them. Combine this with their refusal to accept more common real, learning disorders (like dyslexia) and I tend to not believe a whole lot from them.

Additioanlly, a doctor has had far more education---so I'd tend to believe their diagnosis over someone who took a couple of psych courses.

Zumpie - it requires a least one Master's Degree and years of advanced professional development to be hired into an evaluation role with PPS or with MESD, not "a couple of psych courses".

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