PDD-NOS a long vent and maybe a reach out for better information.

ABColeslaw · April 2012

We took Asher (My little boy) to see a pediatric neurologist. He was recently reevaluated by EI and EI is turning his information over to the public school for the intergrated preschool program that starts at 2.8. The school will be evaluating Asher very soon and meeting to write an IEP. So we went to the pediatric neurologist to have our own evaluation done to go in conjunction with the one from EI and the school system.

Yesterday we had our follow up appt with the neurologist. She was supposed to give us her report and recommendations for preschool. Phill couldn't attend, which was fine. But when I got there, she immediately unloaded a diagnosis of PDD-NOS Austism Spectrum Disorder.

Now I'm not stupid and I'm not living in denial land when it comes to my kid. He is language delayed, he has sensory processing issues, severe allergies. He is a handful. I'm aware. I got EI involved before most parents would have, he has speech twice a week, and OT twice a week. He sees his allergist once a month and GI specialist every three months.

I know my kid is not normal. And I know I've lost objectivity since he is my little boy, but as an educator (Language Based Learning Disability Specialist) that works with kids on IEPS, writes them, works with both language disabled and Autistic kids.....I just don't see it in Asher. Thats not to say he isn't quirky as hell, hyperactive, sensory disregulated, or struggling with communication. But not in the Autism marker kinda ways.

It just doesn't sit true. But at the same time, it hurt to hear it. I told the doctor my reasons for not supporting the diagnosis. She handed me a pamphlet on stages of denial and acceptance. I nicely explained that I know I have lost objectivity, but that I needed her to respect that I am coming to the table with a considerable knowledge and skill set in this area and that she needed to take my concerns seriously.

I think it is bad practice to evaluate a 2 year in 1 two hour session, one you have never met before, do the evaluation in a small room, not provide sensory breaks, and make a life altering diagnosis based on that one time of meeting him.

I told her that. I told her that I would need a second or third opinion and that I did not want her placing it in his medical record. Anyway, this appt was right before work so I didn't have time to process it at all. I ended up having my husband leave work and meet me at my school so we could briefly chat. But the more we talked about it, the more sick I started to feel. He left and I had to grab a student. And of course my first student of the day is a kiddo with the same exact diagnosis. And all I could focus on during our session was all the little spectrummy things he did, and my mind would race to Asher and thinking "Is this what he'll look like in Kindergarten?" So I sent him back to his room and I closed my office door and canceled my services for the entire morning and just cried. Like a crazy biitch.

I've read the report a few times now that I've had time to collect myself and calm down. And I still don't see 90% of what the doctor was talking about. I sent the report to Asher's SLP and got an immediate disbelieving response and a strong recommendation to get another opinion. She said she is shocked that a diagnoses had been made so quickly and that she didn't see any of the markers from the report in her intensive sessions with Asher. So now I'm pissed because our SLP actually knows Asher and is amazing. To make matters worse, I logged into the online medical record and saw that it is already recording in his "heath concerns" tab.

This morning I made an initial appt to have Asher evaluated at the LADDERS clinic, which is one of the best Autism Research Clinics in the world. The evaluation is going to cost between 5-10 grand....(Guess house hunting is on hold again) But I have very little time to get this done. We've already been contacted by the public school to set up times for the school's evaluation.

I feel utterly sick to my stomach. I threw up all night. Its like I'm falling apart. And even though my heart doesn't believe this diagnosis, I find myself looking at every little thing that he does now and thinking "Oh god, he didn't hold my gaze long enough" or "I thought he was excited about his show, but maybe that was actually an sterotypic repetitive movement" and then thinking "Is it really possible I could have missed something like this?" I don't know what to do.

ToastieSimons · April 2012

We've all been there ABC. I'm not here to say if Asher has ASD or not, but the way I look at it, right now take the diagnosis. Use it to get him services (speech, OT and into the classroom).

At 2 it's such a hard diagnosis to make anyway. Have him reevaluated in a year or two and decide then.

I guess to me having a "label" and receiving services is better than waiting and fighting for a more accurate diagnosis and then missing out on any services.

Auntie will have more to add, she's like our resident ASD guru.

Sobachka · April 2012

I am sorry. This sucks. DS was evaluated by a developmental pediatrician for about 2 hours and got his diagnosis. You are doing the right thing by looking for a seocnd opinion with a developmental specialist. However, if the diagnosis stands you are doing he right things to help your DS.

ABColeslaw · April 2012

I have nothing against the label itself, but I have seen it stick, even after parents have fought it, and completely screwed up programming for a child that was classic language disabled. I want the right diagnosis. If its ASD, then thats what it is, I just don't see how meeting a child once can lead to an accurate diagnosis.

Assembly_Reqd · April 2012

ABColeslaw:
He is language delayed, he has sensory processing issues, severe allergies. He is a handful. I'm aware......He sees his allergist once a month and GI specialist every three months. .....I just don't see it in Asher.
Thats not to say he isn't quirky as hell, hyperactive, sensory disregulated, or struggling with communication. But not in the Autism marker kinda ways.

What would you consider the "Autism marker kinda ways"? Aren't some of the behaviors you listed considered markers?

At the end of the day, it is great you are being proactive and getting him the services he needs. I know you don't want the dx to 'stick' and I am not sure how it would limit opportunities. I would think most districts would be happy to place him in the LRE which would be mainstream anyway..

((Hugs))

lindzed · April 2012

It's hard no matter what. At some point I decided to use my energy to get Adam the therapy he needs and worry about the dx in a year or two. This works ok for me because I would do the same things I am doing regardless of the diagnosis.

Glendi428 · April 2012

auntie:
LADDERS is a decent program.I know a few folks who have gone through there. I think you'll get a good eval there. Does your insurance not cover this? Most teachers I know have excellent medical coverage. I'm surprised you would be paying OOP. How soon until they can see you? When will you be doing the school evaluation and what scales will they be doing? Depending on the district, schools don't always do as thorough a job as they should in identifying kids on spectrum. Especially if they know the parents aren't looking for an ASD dx.

Are we talking about the old LADDERS program outside Boston? If so, I'm one of the folks Auntie's referring to... DD was dx'd there shortly before turning two (again, by a pediatric neuro - there was some concern about possible absence seizures, but truth be told, I didn't know that a neuro *wasn't* the best option for us.) She was able to dx PDD-NOS after about a one-hour app't with us. Hard pill to swallow for sure, and yes, I couldn't help but wonder how she's able to make such a blanket determination after such a short amount of time... until I grew to understand the sheer depth of knowledge regarding ASD at the practice and the literally thousands of kids they've observed and evaluated. They're absolute pros at sniffing out ASD's... sometimes faster than parents are comfortable with, frankly.

Feel free to PM me if you have specific questions about the Lurie Center (formerly LADDERS)... Auntie's once again done a great job addressing your other concerns and questions, so no need for me to reinvent the wheel.

ABColeslaw · April 2012

-auntie-:
ABColeslaw:
We took Asher (My little boy) to see a pediatric neurologist. He was recently reevaluated by EI and EI is turning his information over to the public school for the intergrated preschool program that starts at 2.8. The school will be evaluating Asher very soon and meeting to write an IEP. So we went to the pediatric neurologist to have our own evaluation done to go in conjunction with the one from EI and the school system.

It's great that you have been able to access the system in order to get him all this help so early on. Whatever is up, I'm sure this will go a long way to help Asher become his best self.

Yesterday we had our follow up appt with the neurologist. She was supposed to give us her report and recommendations for preschool. Phill couldn't attend, which was fine. But when I got there, she immediately unloaded a diagnosis of PDD-NOS Austism Spectrum Disorder.

Wow. You must have been blindsided by her rolling out a dx. Especially without dad there. That's just harsh.

Is there some reason you chose a neurologist over a developmental pedi? I know there are pockets where a neuro is the best person to R/O an ASD, but unless there's a seizure disorder it wouldn't be my first choice.

Now I'm not stupid and I'm not living in denial land when it comes to my kid. He is language delayed, he has sensory processing issues, severe allergies. He is a handful. I'm aware. I got EI involved before most parents would have, he has speech twice a week, and OT twice a week. He sees his allergist once a month and GI specialist every three months.

Umm, language, communication and sensory disorders are kind of the definition of autism at this age. The co-occuring allergies and GI issues are very common among a certain subset of kids with ASDs. Mine doesn't have them, but I know lots of autistic kids with eczema, asthma, allergies, gut troubles and such. The neuro may have interpreted this as a soft sighn along with other red flags.

I know my kid is not normal. And I know I've lost objectivity since he is my little boy, but as an educator (Language Based Learning Disability Specialist) that works with kids on IEPS, writes them, works with both language disabled and Autistic kids.....I just don't see it in Asher. Thats not to say he isn't quirky as hell, hyperactive, sensory disregulated, or struggling with communication. But not in the Autism marker kinda ways.

With all due respect, moms aren't generally the most unbiased reporters out there. Even moms with degrees in special education miss clues or ascribe them to other causes. My BIL's new wife worked as an EI developmental therapist- she not only has a masters in ECE/development, she was working in the field with his age groups. And yeah, she missed it. It was a DT and SLP assigned to her adopted son, an abstinance baby, who got the ball rolling.

It's possible the neuro was wrong about PDD-Nos. I hate to see any child labeled before 3, at 5 would be even better, I think it leads to incomplete or incorrect labels which suggests that autism can be cured if parents work hard enough which just isn't the case. But it could be she was able to intuit this pretty quickly based on your intake paperwork, interviews with you and input from other team members.

One hour doesn't seem like much, but if the right questions are asked and the parent is an accurate reporter it happens. DS's psych pretty much decided he was likely on spectrum based on a 45 minute phone conversation we had in leiu of an intake appointment. He shared this with me a year or so later, not the night of the conversation. DS's second opinion with a dev pedi required me to fill out an 8 page developmental hx. The pedi was so certain from my answers that DS would get an Aspergers dx (this was 1999 and AS was pretty rare)that he rounded up all his residents and fellows to observe the appointment.

It just doesn't sit true. But at the same time, it hurt to hear it. I told the doctor my reasons for not supporting the diagnosis. She handed me a pamphlet on stages of denial and acceptance. I nicely explained that I know I have lost objectivity, but that I needed her to respect that I am coming to the table with a considerable knowledge and skill set in this area and that she needed to take my concerns seriously.

I would have handed you the same information. And I would remind you of the old saw "if you've seen one person with autism, you've seen one person with autism". Do you routinely work with children as young as your son?

I think it is bad practice to evaluate a 2 year in 1 two hour session, one you have never met before, do the evaluation in a small room, not provide sensory breaks, and make a life altering diagnosis based on that one time of meeting him.

Maybe what you need is a second opinion. Maybe she's way off base, maybe you chose to take him to someone who isn't very good at this sort of thing,

But your reaction reminds me of luvmybaby2 who has been working this board actively seeking someone who will tell her the ASD dx is just a bad dream.

I told her that. I told her that I would need a second or third opinion and that I did not want her placing it in his medical record. Anyway, this appt was right before work so I didn't have time to process it at all. I ended up having my husband leave work and meet me at my school so we could briefly chat. But the more we talked about it, the more sick I started to feel. He left and I had to grab a student. And of course my first student of the day is a kiddo with the same exact diagnosis. And all I could focus on during our session was all the little spectrummy things he did, and my mind would race to Asher and thinking "Is this what he'll look like in Kindergarten?" So I sent him back to his room and I closed my office door and canceled my services for the entire morning and just cried. Like a crazy biitch.

So get the second opinion. And the third if it helps. Do you know what scales or inventories she used? ADOS? Vineland?

And try to remember that old saw about one kid with PDD-nos being one kid with PDD-Nos. Your kid, assuming the neuro is correct could present very differently- he could be aggressive, or a rule follower, or dreamy, or develop stigmatizing tics.

I've read the report a few times now that I've had time to collect myself and calm down. And I still don't see 90% of what the doctor was talking about. I sent the report to Asher's SLP and got an immediate disbelieving response and a strong recommendation to get another opinion. She said she is shocked that a diagnoses had been made so quickly and that she didn't see any of the markers from the report in her intensive sessions with Asher. So now I'm pissed because our SLP actually knows Asher and is amazing. To make matters worse, I logged into the online medical record and saw that it is already recording in his "heath concerns" tab.

Mommygoggles sometimes keep us from seeing what's obvious to others. DS got an ADHD dx along with AS from his first 3 evaluations. To be honest, I didn't see it. At all. I will admit to giving the side eye not only to his psych, his dev pedi and the developmental neurologist who did his educational testing but alos to moms of kids who swore DS was like their kids "at that age". They got the last laugh, by 4th grade I believed in ADHD by middle school 90% of his IEP was related to his executive function issues.

Of course, your SLP isn't qualified to make an ASD dx or rule one out. It's just beyond her area of expertise however awesome you think she is.I'm shocked that she has never seen an ASD dx made that quickly; talking with other parents this happens fairly often.

This morning I made an initial appt to have Asher evaluated at the LADDERS clinic, which is one of the best Autism Research Clinics in the world. The evaluation is going to cost between 5-10 grand....(Guess house hunting is on hold again) But I have very little time to get this done. We've already been contacted by the public school to set up times for the school's evaluation.

LADDERS is a decent program.I know a few folks who have gone through there. I think you'll get a good eval there. Does your insurance not cover this? Most teachers I know have excellent medical coverage. I'm surprised you would be paying OOP. How soon until they can see you? When will you be doing the school evaluation and what scales will they be doing? Depending on the district, schools don't always do as thorough a job as they should in identifying kids on spectrum. Especially if they know the parents aren't looking for an ASD dx.

I feel utterly sick to my stomach. I threw up all night. Its like I'm falling apart. And even though my heart doesn't believe this diagnosis, I find myself looking at every little thing that he does now and thinking "Oh god, he didn't hold my gaze long enough" or "I thought he was excited about his show, but maybe that was actually an sterotypic repetitive movement" and then thinking "Is it really possible I could have missed something like this?" I don't know what to do.

It's weird. I know a couple of people who got an ASD dx incorrectly for a child. For the parents who truly didn't buy in, there wasn't the level of anger or angst you seem to have. They sort of approached it as if it was a means to intensive services and embraced that consequence. They didn't pick apart the diagnostic process or the clinicans or anything else, they just took the help and ran.

Try to keep an open mind. Get your second opinion and see how it goes. He either has an ASD or he doesn't. If he does, he'll be the same kid who always lived with you.

And if you can't properly serve those students assigned to you, please move on. They deserve better than a teacher who can't look at them with compassion, respect and hope for their futures. If one of DS's team wrote about the stimming kindie kid as you did here, I'd want her head on a stick in my yard.

the only part of your entire response that I can't give credit to is the very last paragraph. I think you've judged me unfairly. I am an intense advocate for my students and I care very deeply about them. What I said was that it was hard for me to look at that child and see that future of my son. I can care deeply about my students, believe they are wonderful, full of potential, and amazing little beings and have it still be okay to say that I want something different for my little boy. It made me sad. That doesn't mean I don't have hope for my student's future. I have a great relationship with that student and his parents and I know given the choice his mother wouldn't have wanted that for her son either. No matter what happens with Asher Ben, I will cherish him....utterly and absolutely.

suzymarie · April 2012

I don't know that I am any help- my outlook was always to diagnose whatever fit at the time, and we can always change our minds later if he outgrows certain behaviors and the diagnosis no longer fits.

So I guess my advice is to go with the flow, and not freak out. Now, don't go read my freak-out post a few up from yours, lol!

ABColeslaw · April 2012

-auntie-:

the only part of your entire response that I can't give credit to is the very last paragraph. I think you've judged me unfairly. I am an intense advocate for my students and I care very deeply about them. What I said was that it was hard for me to look at that child and see that future of my son. I can care deeply about my students, believe they are wonderful, full of potential, and amazing little beings and have it still be okay to say that I want something different for my little boy. It made me sad. That doesn't mean I don't have hope for my student's future. I have a great relationship with that student and his parents and I know given the choice his mother wouldn't have wanted that for her son either. No matter what happens with Asher Ben, I will cherish him....utterly and absolutely.

I'm sorry you felt judged. I was only reacting to the way your post felt to me- as if you were judging that child and by extension- mine. The way his stimming impacted you as a possible window to your future, you had to get away from him.

Nobody wants their child challenged, it's OK to feel that way. I do too, but on top of all your denial and anger it just felt, to me, like you thought your kid was better than that.

fair enough, I can see that from your point of view. I think I may have also typed in a confusing manner. I finished my entire session with that child which was 90 minutes and then I sent him back to class. I didn't take any other kids for the rest of the morning, because I didn't think that I could be my very best for them that morning, in which case they really are better off in their own classrooms with their peers and classroom teacher.

I really do not think that my child is better. Every parent loves thier child like crazy and sometimes I joke that no one in the world loves thier little boy like I love mine. I know thats not true, but I love him intensly. I truly meant to convey that I don't want him to struggle. I don't like watching my students struggle either. Believe it or not, we become quite attached to our kiddos especially at my grade level which is k-2, they are still very small children.

I think a bit of the intensity you're picking up one comes from the fact that we've had to struggle with Asher in other way since the second he was born....before then even. Asher's allergies aren't like typical allergies. Asher has primary immuno deficiency, acute multiple protien allergy, and eosinophilic esophogitis. The first time Asher was hospitalized for anaphylaxis was 11 weeks. He was in and ICU clean room for a week. So even though I'm new to the world of Autism in a personal way, I'm not new to fighting for my little boy. And I'm tired. And I'm angry. And I am sad for him.

Also, if I thought there was no possible way Asher could have autism, I wouldn't be taking him for a second opinion. I chose LADDERS because I have experience with them working with students, but more importantly I am very close to a little boy ( he was actually my ring bearer in my wedding) who is severly austic with a slew of co-morbid diagnoses and he was diagnosed there. I know that if I take Asher there, they will do a fair evaluation and if the answer is Autism, then I am going to be ready to hit the ground running for my little boy. I just really want to make sure I hit the ground running in the right direction.

Assembly_Reqd · April 2012

I have been thinking. Do you think some of his behaviors are more of a result of the allergies? Like, he doesn't feel well and therefore cannot be his best self? Are the allergies "under control" so to speak?

From my own perspective, about 20-ish% of children with callosal disorders, like my son, also have autism. Autism is the behavioral dx and Disgenesis of the Corpus Callosum is the 'physiological/medical' dx. (for lack of a better term). Many parents refuse to let the Autism label be used. They feel that their child's diagnosis is DCC and that's all there is to it. They have figured out though, that the Autism dx is the pill to swallow to get the most services. So, they run with it.

So maybe your child's behaviors can be attributed in some part to "something else". For example, if the allergies magically went away tomorrow would the behavior improve as well and as magically?

At this snapshot in time, however, his behaviors check off enough boxes on somebody's form which then calculates him as being PDD-NOS. I would probably get a second opinion too, just to be sure. Good Luck.

mcarter127 · April 2012

ABColeslaw:
We took Asher (My little boy) to see a pediatric neurologist. He was recently reevaluated by EI and EI is turning his information over to the public school for the intergrated preschool program that starts at 2.8. The school will be evaluating Asher very soon and meeting to write an IEP. So we went to the pediatric neurologist to have our own evaluation done to go in conjunction with the one from EI and the school system.

Yesterday we had our follow up appt with the neurologist. She was supposed to give us her report and recommendations for preschool. Phill couldn't attend, which was fine. But when I got there, she immediately unloaded a diagnosis of PDD-NOS Austism Spectrum Disorder.

Now I'm not stupid and I'm not living in denial land when it comes to my kid. He is language delayed, he has sensory processing issues, severe allergies. He is a handful. I'm aware. I got EI involved before most parents would have, he has speech twice a week, and OT twice a week. He sees his allergist once a month and GI specialist every three months.

I know my kid is not normal. And I know I've lost objectivity since he is my little boy, but as an educator (Language Based Learning Disability Specialist) that works with kids on IEPS, writes them, works with both language disabled and Autistic kids.....I just don't see it in Asher. Thats not to say he isn't quirky as hell, hyperactive, sensory disregulated, or struggling with communication. But not in the Autism marker kinda ways.

It just doesn't sit true. But at the same time, it hurt to hear it. I told the doctor my reasons for not supporting the diagnosis. She handed me a pamphlet on stages of denial and acceptance. I nicely explained that I know I have lost objectivity, but that I needed her to respect that I am coming to the table with a considerable knowledge and skill set in this area and that she needed to take my concerns seriously.

I think it is bad practice to evaluate a 2 year in 1 two hour session, one you have never met before, do the evaluation in a small room, not provide sensory breaks, and make a life altering diagnosis based on that one time of meeting him.

I told her that. I told her that I would need a second or third opinion and that I did not want her placing it in his medical record. Anyway, this appt was right before work so I didn't have time to process it at all. I ended up having my husband leave work and meet me at my school so we could briefly chat. But the more we talked about it, the more sick I started to feel. He left and I had to grab a student. And of course my first student of the day is a kiddo with the same exact diagnosis. And all I could focus on during our session was all the little spectrummy things he did, and my mind would race to Asher and thinking "Is this what he'll look like in Kindergarten?" So I sent him back to his room and I closed my office door and canceled my services for the entire morning and just cried. Like a crazy biitch.

I've read the report a few times now that I've had time to collect myself and calm down. And I still don't see 90% of what the doctor was talking about. I sent the report to Asher's SLP and got an immediate disbelieving response and a strong recommendation to get another opinion. She said she is shocked that a diagnoses had been made so quickly and that she didn't see any of the markers from the report in her intensive sessions with Asher. So now I'm pissed because our SLP actually knows Asher and is amazing. To make matters worse, I logged into the online medical record and saw that it is already recording in his "heath concerns" tab.

This morning I made an initial appt to have Asher evaluated at the LADDERS clinic, which is one of the best Autism Research Clinics in the world. The evaluation is going to cost between 5-10 grand....(Guess house hunting is on hold again) But I have very little time to get this done. We've already been contacted by the public school to set up times for the school's evaluation.

I feel utterly sick to my stomach. I threw up all night. Its like I'm falling apart. And even though my heart doesn't believe this diagnosis, I find myself looking at every little thing that he does now and thinking "Oh god, he didn't hold my gaze long enough" or "I thought he was excited about his show, but maybe that was actually an sterotypic repetitive movement" and then thinking "Is it really possible I could have missed something like this?" I don't know what to do.

I

I remember you from the food allergy board! I'm so sorry you've had to join over here, but I am glad you are here & getting support, these ladies are an amazing wealth of information!

Pour kiddos have a lot of similarities (Severe FA, SPD, immune disorders) & we're also in the process of getting an ASD diagnosis. We've suspected that something more than SPD was going on for a while so it wasnt a surprise to us when it was brought up by his Drs. I can't imagine having that type of news just dropped in your lap without expecting it! I am sure that was awful, especially since you were alone.

How soon are you able to get in for a 2nd opinion? I think it's so important to have it done by a center you trust so that you have confidence in whatever the dx may be. I have no doubt that you will fight to get him every therapy he needs just as you've fought for all of his medical needs.

I feel like we just keep getting more stuff added to our plate & it can get really overwhelming. I've learned that with a dx often comes more opportunity for therapies that can help either way & I'm ok with that. Definitely get a 2nd opinion & then go from there but I just wouldn't wait too long on starting therapies. I know some Autism Centers take 6-12 months to get into so just keep that in mind.

Good luck & I'm so sorry you're dealing with one more thing!

ABColeslaw · April 2012

Assembly_Reqd:

I have been thinking. Do you think some of his behaviors are more of a result of the allergies? Like, he doesn't feel well and therefore cannot be his best self? Are the allergies "under control" so to speak?

From my own perspective, about 20-ish% of children with callosal disorders, like my son, also have autism. Autism is the behavioral dx and Disgenesis of the Corpus Callosum is the 'physiological/medical' dx. (for lack of a better term). Many parents refuse to let the Autism label be used. They feel that their child's diagnosis is DCC and that's all there is to it. They have figured out though, that the Autism dx is the pill to swallow to get the most services. So, they run with it.

So maybe your child's behaviors can be attributed in some part to "something else". For example, if the allergies magically went away tomorrow would the behavior improve as well and as magically?

At this snapshot in time, however, his behaviors check off enough boxes on somebody's form which then calculates him as being PDD-NOS. I would probably get a second opinion too, just to be sure. Good Luck.

Yes you just hit the nail on the head. Asher's allergies are not under control and his body is always in crisis. His allergiest told me that every single child he treats with Asher's condition has sensory issues. Asher has the worst form of his condition. His sensory issues are so bad that it takes over his auditory processing ability as well.

My issue with the diagnosis was that she listed a lack of emotional reciprocity and eye to eye gaze. And those aren't actually an issue for him. In fact EI, speech, OT, and his developmental specialist list those things are huge strengths for him.

I mentioned to her when she went over her results that I really wanted her to consider the diagnosis in light of the fact that Asher's allergies have been out of control and that less than a week before his eval he actually had an allergic emergency. Several times during the eval I asked if he could have a sensory break. She said she was pressed for time, had another kid coming in... She also handed him playdough which he can't have and he was upset when I took it away really quickly....but its unsafe for him.

I don't know. I guess I just want to know I'm on the right path. Because I want whats best for him. I don't feel like I know that this is the path. It could be, but I have doubts. I want to be sure.

ABColeslaw · April 2012

mcarter127:

I remember you from the food allergy board! I'm so sorry you've had to join over here, but I am glad you are here & getting support, these ladies are an amazing wealth of information!

Pour kiddos have a lot of similarities (Severe FA, SPD, immune disorders) & we're also in the process of getting an ASD diagnosis. We've suspected that something more than SPD was going on for a while so it wasnt a surprise to us when it was brought up by his Drs. I can't imagine having that type of news just dropped in your lap without expecting it! I am sure that was awful, especially since you were alone.

How soon are you able to get in for a 2nd opinion? I think it's so important to have it done by a center you trust so that you have confidence in whatever the dx may be. I have no doubt that you will fight to get him every therapy he needs just as you've fought for all of his medical needs.

I feel like we just keep getting more stuff added to our plate & it can get really overwhelming. I've learned that with a dx often comes more opportunity for therapies that can help either way & I'm ok with that. Definitely get a 2nd opinion & then go from there but I just wouldn't wait too long on starting therapies. I know some Autism Centers take 6-12 months to get into so just keep that in mind.

Good luck & I'm so sorry you're dealing with one more thing!

Honestly, I am going to hand over the diagnosis to early intervention and I've already called the Autism Services Center through the dept of health. I'm going to start services, because realistically these therapies would benefit any child. We may have to wait a long time to get into LADDERS for our second opinion. I don't think so highly of my own opinion that I want to risk being wrong and having missed out on valuable theraputic time.

Assembly_Reqd · April 2012

ABColeslaw:
Assembly_Reqd:

I have been thinking. Do you think some of his behaviors are more of a result of the allergies? Like, he doesn't feel well and therefore cannot be his best self? Are the allergies "under control" so to speak?

From my own perspective, about 20-ish% of children with callosal disorders, like my son, also have autism. Autism is the behavioral dx and Disgenesis of the Corpus Callosum is the 'physiological/medical' dx. (for lack of a better term). Many parents refuse to let the Autism label be used. They feel that their child's diagnosis is DCC and that's all there is to it. They have figured out though, that the Autism dx is the pill to swallow to get the most services. So, they run with it.

So maybe your child's behaviors can be attributed in some part to "something else". For example, if the allergies magically went away tomorrow would the behavior improve as well and as magically?

At this snapshot in time, however, his behaviors check off enough boxes on somebody's form which then calculates him as being PDD-NOS. I would probably get a second opinion too, just to be sure. Good Luck.

Yes you just hit the nail on the head. Asher's allergies are not under control and his body is always in crisis. His allergiest told me that every single child he treats with Asher's condition has sensory issues. Asher has the worst form of his condition. His sensory issues are so bad that it takes over his auditory processing ability as well.

My issue with the diagnosis was that she listed a lack of emotional reciprocity and eye to eye gaze. And those aren't actually an issue for him. In fact EI, speech, OT, and his developmental specialist list those things are huge strengths for him.

I mentioned to her when she went over her results that I really wanted her to consider the diagnosis in light of the fact that Asher's allergies have been out of control and that less than a week before his eval he actually had an allergic emergency. Several times during the eval I asked if he could have a sensory break. She said she was pressed for time, had another kid coming in... She also handed him playdough which he can't have and he was upset when I took it away really quickly....but its unsafe for him.

I don't know. I guess I just want to know I'm on the right path. Because I want whats best for him. I don't feel like I know that this is the path. It could be, but I have doubts. I want to be sure.

I see what you are saying about wanting to be on the "right path".

However.

The therapies to help him self-regulate are the same therapies that help PDD-NOS children. Don't get all academic and caught up on semantics. If the allergies are causing the behaviors, then fine, it's allergies with a capital 'A', and not that other pesky A-word. Stick out tongue

ETA I am super glad you are going ahead with therapies!

ABColeslaw · April 2012

Assembly_Reqd:
ABColeslaw:
Assembly_Reqd:

I have been thinking. Do you think some of his behaviors are more of a result of the allergies? Like, he doesn't feel well and therefore cannot be his best self? Are the allergies "under control" so to speak?

From my own perspective, about 20-ish% of children with callosal disorders, like my son, also have autism. Autism is the behavioral dx and Disgenesis of the Corpus Callosum is the 'physiological/medical' dx. (for lack of a better term). Many parents refuse to let the Autism label be used. They feel that their child's diagnosis is DCC and that's all there is to it. They have figured out though, that the Autism dx is the pill to swallow to get the most services. So, they run with it.

So maybe your child's behaviors can be attributed in some part to "something else". For example, if the allergies magically went away tomorrow would the behavior improve as well and as magically?

At this snapshot in time, however, his behaviors check off enough boxes on somebody's form which then calculates him as being PDD-NOS. I would probably get a second opinion too, just to be sure. Good Luck.

Yes you just hit the nail on the head. Asher's allergies are not under control and his body is always in crisis. His allergiest told me that every single child he treats with Asher's condition has sensory issues. Asher has the worst form of his condition. His sensory issues are so bad that it takes over his auditory processing ability as well.

My issue with the diagnosis was that she listed a lack of emotional reciprocity and eye to eye gaze. And those aren't actually an issue for him. In fact EI, speech, OT, and his developmental specialist list those things are huge strengths for him.

I mentioned to her when she went over her results that I really wanted her to consider the diagnosis in light of the fact that Asher's allergies have been out of control and that less than a week before his eval he actually had an allergic emergency. Several times during the eval I asked if he could have a sensory break. She said she was pressed for time, had another kid coming in... She also handed him playdough which he can't have and he was upset when I took it away really quickly....but its unsafe for him.

I don't know. I guess I just want to know I'm on the right path. Because I want whats best for him. I don't feel like I know that this is the path. It could be, but I have doubts. I want to be sure.

I see what you are saying about wanting to be on the "right path".

However.

The therapies to help him self-regulate are the same therapies that help PDD-NOS children. Don't get all academic and caught up on semantics. If the allergies are causing the behaviors, then fine, it's allergies with a capital 'A', and not that other pesky A-word.

No its true. And honestly, I'll take all the OT and Speech I can get for him. One of the big heart breakers for me was actually the language delay because I feel guilty that I can teach other people's delayed kids to talk, process language, learn to read. I can't teach my own child to talk. I know my job is to be his mom, I can't be his teacher, therapist...savior. I know that. But it took me a long time to get to this place.

Assembly_Reqd · April 2012

ABColeslaw:

No its true. And honestly, I'll take all the OT and Speech I can get for him. One of the big heart breakers for me was actually the language delay because I feel guilty that I can teach other people's delayed kids to talk, process language, learn to read. I can't teach my own child to talk. I know my job is to be his mom, I can't be his teacher, therapist...savior. I know that. But it took me a long time to get to this place.

You cannot beat yourself up over this. We are Mommies first. If you were a surgeon would you be able to operate on your own child effectively? Probably not.

A therapist can get my kid to do so much more than I can. She/he won't get all "meltsies" when he starts to cry and fuss cuz it's too hard. Embarrassed

His(1&only)wife · April 2012

ABColeslaw:

The therapies to help him self-regulate are the same therapies that help PDD-NOS children. Don't get all academic and caught up on semantics. If the allergies are No its true. And honestly, I'll take all the OT and Speech I can get for him. One of the big heart breakers for me was actually the language delay because I feel guilty that I can teach other people's delayed kids to talk, process language, learn to read. I can't teach my own child to talk. I know my job is to be his mom, I can't be his teacher, therapist...savior. I know that. But it took me a long time to get to this place.

We were in the waiting room at the ortho yesterday and there was another woman and her DD. Her DD has a deletion on Chromosone 3 and my DS has Autism. We were talking about our kid's speech delays and she said she is a speech therapist for a local elementary school. She said that she tried for the first couple years to be her DD's mom and ST but realized you can't do both. An outside therapist can get our kids to do things we as their parents just can't no matter what our training is.

kyethra · April 2012

If that Dx gets you services that help, use and embrace it. You can reevaluate in a couple of years. Yes, getting accurate dx is important and making sure you aren't missing LDs, but right now it sounds like this is the sort of situation where he is going to get interventions that are probably going to help and as he gets older you can fine tune things more. I think of labels like tools. I can use them-- they are good for getting services and a variety of other things. But I don't have to use them-- I can just put them in the drawer. It isn't something that I think about all the time. If I need to drive a nail into something I am going to want my hammer for that, but I'm not going to sleep with my hammer in the bed at night. just focus on asher, not the dx.

Wahoo · April 2012

I recently read an article where the author said that autism is over-diagnosed (not saying I agree or disagree with the article) - but a major point of the article was that the diagnosis is the only way to get services. There are no services provided without a diagnosis. But even if the kids ARE NOT on the spectrum, they still need services (OT, behavior modification). His problem was that a child in need could not get the services they needed without being diagnosed with a spectrum disorder.

Karalyn44 · April 2012

-auntie-:
Wahoo:

I recently read an article where the author said that autism is over-diagnosed (not saying I agree or disagree with the article) - but a major point of the article was that the diagnosis is the only way to get services. There are no services provided without a diagnosis. But even if the kids ARE NOT on the spectrum, they still need services (OT, behavior modification). His problem was that a child in need could not get the services they needed without being diagnosed with a spectrum disorder

Can you post a link? There is a lot of noise out there right now; April is autism awareness month.

For children under 3, no diagnosis is required for services. A speech delay or sensory processing deficit can be treated as just that and addressed. Even kids who are at risk of delays because of genetics or prenatal issues can be served based on their potential for delays.

To the OP, I think you are wise to go forward with the evaluations. It's tempting to ascribe behaviors that can be associated with autism to other issues. I have met a few allergy/EE moms whose kids got dx'd late because they and their team were so bought into the discomfort=behavior way of thinking.

This may be what Wahoo was referring to:

https://www.nypost.com/p/news/opinion/opedcolumnists/america_false_autism_epidemic_jfI7XORH94IcUB795b6f7L?fb_comment_id=fbc_10150717270398533_21854994_10150719572873533#fdeb4871a212f4

far_more_than_rubies · April 2012

OP-- I just want to extend a hug to you. I also work in the field, and I have come to realize that this often makes it WORSE on me. We work all day to help struggling kids and then you go home to help your own struggling kid and there is just very little time away from it all.

Good luck and keep us posted!

lite-bright · April 2012

I don't really have much to add, just to say that I'm sorry to see you over here, ABC, with even more (potentially) to deal with, with little Asher. I know you guys have already been through a lot.

Good for you for going ahead with the services, and certainly a second opinion may offer more insight -- more detail, give you more confidence in its accuracy, etc. The psych that we work with for Floortime thinks that DD1 may have a non-verbal LD rather than autism -- I'm not sure I agree, and we've declined further testing for now, but I'll admit that it is rather soothing to think about even though it doesn't change her needs or deficits.

Best of luck to you, and know we're here to listen. You're a strong woman and I know you'll continue to do the absolute best by Asher.

ABColeslaw · April 2012

lite-bright:

I don't really have much to add, just to say that I'm sorry to see you over here, ABC, with even more (potentially) to deal with, with little Asher. I know you guys have already been through a lot.

Good for you for going ahead with the services, and certainly a second opinion may offer more insight -- more detail, give you more confidence in its accuracy, etc. The psych that we work with for Floortime thinks that DD1 may have a non-verbal LD rather than autism -- I'm not sure I agree, and we've declined further testing for now, but I'll admit that it is rather soothing to think about even though it doesn't change her needs or deficits.

Best of luck to you, and know we're here to listen. You're a strong woman and I know you'll continue to do the absolute best by Asher.

One of the things that keep hitting me as I read through posts here and try to get a feel for the board, is all the names that I recognize from the trimester and age group boards. I really didn't know how many of us were over here, and it goes to show that I'm certainly not alone by any means.

kyethra · May 2012

In an either or situation, an ASD diagnosis will serve better than a NVLD one. They highly overlap and the services for learning disabilities are often more limited and don't extend into adulthood. There is better understanding about ASDs and with an ASD dx one is more likely to get services and such as they get older.

Want a personalized experience?

PDD-NOS a long vent and maybe a reach out for better information.

Re: PDD-NOS a long vent and maybe a reach out for better information.

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