Autism/Anemia Connection.... and a few other questions?

lightgetsin

Just wondering if any of you whose children have the diagnosis are they also anemic?

DS is currently being evaluated and so far tests have shown anemia and a neuro nurse practitioner said he has some low tone.  She also said that if he does turn out to be Autistic, he is very high functioning.  She has asked me to have the school evaluate him.  He is already in a school program for speech delay which I thought/hoped was cause by ear fluid (his hearing was tested at two and he flat out could not hear.  This resolved with tube placement.)

Would you all have the school evaluate or find a professional to do it?  I assume she wants the school to do it because there is less of a wait?  I asked his teacher if she thought he was on the spectrum and she said "No, he is a language only kid. The quirks that he has are just a part of who he is.  Not Autism."

And one more random question: Is Autism all the time?  I mean is it something where the symptoms ebb and flow depending on things like how tired your child might be?  I hope this is not a silly question but I feel like with my son, sometimes he is completely "normal" and then other times...I wonder.

Micelle78

How old is your DS?  Mine just turned 4 and despite no dx yet (pedi thinks we should wait another year, SLP and OT thinks no way is he autistic and biggest person-- DH feels like its not and we made a deal I would wait until the year before kindie and take him then) FTR he has had speech for two years and OT/feeding therapy for a year.  Completed one year of NT preschool- although not very successfully as far as following expectations.

I am the one that does all the reading of blogs, google, the bump and such.  I am pretty sure he is and would probably most resemble a cross between the old dx DSMIV of PDD-NOS and Aspergers.  He has hyperlexia (can read letters before age two and read words by sounding out and rote by age 3 and I did not teach him), neurologically caused vision problems, mild hypotonia, receptive/expressive speech delay, figured out how to navigate and use a Kindle Fire before age 2, had only letter names and 4-5 words used consistently at age 2- with no verbs.

However, he is the friendliest and most outgoing in a naive and innocent way.  He talks to everybody and even the grumpiest person ends up laughing because he will say hello and ask them a question.  His receptive langauage is really bad though and if they ask him a question back he usually changes the subject because he does not know how to answer it. 

This super happy-outgoing nature is the reason everyone tells me its not an ASD.  Lots of people have told me this, HOWEVER, he does weird stuff all the time.  He used to talk mostly in echolalia and is finally almost done with it.  He notices things that most people would not.  He points out and counts ceiling fans and air vents in stores.  He played a new ABC app on his Kindle yesterday.  I was walking into the store with him and he is talking to himself "A is for apple, B is for bridge, C is for Canary...." These things were from the ABC app and not typical sounding objects that you would first think of.  He had memorized the entire 26 things...in order... in a day.  He has done this with the United States.  About 2 months before turning three he memorized all the states---where they went and put the puzzle together by himself in a matter of a couple weeks.

Whatever part of the brain is super good at spatial and memory must be amazing in his head.  I still can't have a 4 year old conversation with him yet.  However even a year ago it was much worse with hardly any verbs and I had to teach the verbs to him by flashcards, books, over enunciating when I talked, repeating myself, lots of open ended sentences and questions.  He has made amazing progress.  He still has so much to go.  

So to answer your question, some days he looks less atypical.  Although I do believe he is doing a little bit of growing into his disorder .  My mom hasn't come out and said it but I feel pretty sure she is thinking the same thing.  Its like as they age, you get a clearer picture.  Some things improved and some are getting worse. 

I notice he has days too where he is so different.  He has a terrible diet and is hard to get to go to bed.  So I know that plays a part as well as his vision. (very farsided +6) He also has a TON of sensory issues.  There are days though that he talks in better sentences and very thoughtful and I get these glimpses of what he may be like if he did not have all these things going on.  It is wonderful and amazing and the normal that I long for   .  We also have been doing compression garments (very expensive-- $250 shirts before insurance) and we noticed clarity in hhis speech and a calmness in his behavior. 

I would take anyone that is not an expert in ASD with a grain of salt right now because I feel that by the time we do the actual eval... everyone that tried to comfort me will be wrong.  Just my perspective I guess.

typeset

lightgetsin said:

Just wondering if any of you whose children have the diagnosis are they also anemic?

No anemia here.

DS is currently being evaluated and so far tests have shown anemia and a neuro nurse practitioner said he has some low tone.  

Yup, we have low tone through the shoulders, trunk, pelvic girdle, lower extremities ... It impacts his ability to sit and stand for tasks. We get the lean a lot. You can do PT to build strength, but you can't fix tone. 

She also said that if he does turn out to be Autistic, he is very high functioning.  She has asked me to have the school evaluate him. ... Would you all have the school evaluate or find a professional to do it?  I assume she wants the school to do it because there is less of a wait?  I asked his teacher if she thought he was on the spectrum and she said "No, he is a language only kid. The quirks that he has are just a part of who he is.  Not Autism."

I'd do both. It's not about the wait. It's about services. You can't get targeted help for the classroom without an educational diagnosis and a medical evaluation can bring recommendations to the table. His teacher is not qualified to make that call. That would be a developmental pediatrician, a neuropsych, or a neurologist. 

And one more random question: Is Autism all the time?  I mean is it something where the symptoms ebb and flow depending on things like how tired your child might be?  I hope this is not a silly question but I feel like with my son, sometimes he is completely "normal" and then other times...I wonder.

It's how he's wired, but we absolutely have good days and bad. I've discussed that with other parents of kiddos with ASD. Prior to the Dx, he'd have a slew of bad days and I'd be convinced, then he'd have one good day and everything would be thrown into doubt because I wanted it to not be true. Fevers can change functioning in some kids. Give my kid a low-grade temp and he's damn near NT. Some see changes with diet, dyes, etc. Others with sleep. It also changes over time in that certain behaviors can be extinguished or outgrown only to be replaced by new (sometimes worse) ones. Special interests evolve, too. 

typeset

Micelle78 said:

However, he is the friendliest and most outgoing in a naive and innocent way.  He talks to everybody and even the grumpiest person ends up laughing because he will say hello and ask them a question.  His receptive langauage is really bad though and if they ask him a question back he usually changes the subject because he does not know how to answer it. 

This super happy-outgoing nature is the reason everyone tells me its not an ASD. 

[pointed look]

You've just described my kid. I get "he's so social/outgoing/chatty!' from laypeople all the time. To a clinician? He stands out like a sore thumb. The neurologist who did our initial Dx using the DSM-IV-TR pegged him as PDD-NOS because he has social interest. He does not, however, have social ability. ADOS came back in the moderate to severe range with 6 mo. social skills at 24 mos. 

You scratch the surface of what he presents to the world and it goes to pieces. 

Junebug060609

I'm sure others with more experience will chime in, but I'll throw in my two cents.

Just wondering if any of you whose children have the diagnosis are they also anemic?

He was slightly anemic when he was tested at 9 months.  I had to give supplements from 9-12 months.  It hasn't been brought up since.

DS is currently being evaluated and so far tests have shown anemia and a neuro nurse practitioner said he has some low tone.  She also said that if he does turn out to be Autistic, he is very high functioning.  She has asked me to have the school evaluate him.  He is already in a school program for speech delay which I thought/hoped was cause by ear fluid (his hearing was tested at two and he flat out could not hear.  This resolved with tube placement.)

Would you all have the school evaluate or find a professional to do it?  I assume she wants the school to do it because there is less of a wait?  I asked his teacher if she thought he was on the spectrum and she said "No, he is a language only kid. The quirks that he has are just a part of who he is.  Not Autism."

I'll defer on the school/private eval to those that have had to deal with that.  I walked into the pre-school eval already having all the evals done recently...they pretty much met with him for a few minutes, long enough to say they think the evals were accurate, and then used the eval to make their decisions.

I'd caution you who you listen to when it comes to determining if he's on the spectrum or not.  I've found a lot of people think my DS isn't...but yet every.single.person who is actually qualified to dx autism has thought he was almost immediately. 

And one more random question: Is Autism all the time?  I mean is it something where the symptoms ebb and flow depending on things like how tired your child might be?  I hope this is not a silly question but I feel like with my son, sometimes he is completely "normal" and then other times...I wonder.

It is all the time, but it also ebbs and flows...if that makes sense.  What I mean is that my DS is always autistic...but sometimes it's more apparent than others.  At times he can seem like a pretty typical kid, at other times it is blatantly clear there's something going on.  Things like him being tired, excited, overstimulated (DS is a seeker so he goes kinda nuts in a happy way [jumping, grunting, flapping his hands, wanting to run around] when there is a lot going on).  Being tired is a biggie for bringing on DS's stimming for us.  Being sick, on the other hand, often lessens symptoms. 

Junebug060609

Sorry.  Duplicate post

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greyt00

I want to read more of this and reply later, but for now I will add this -- my son's diet was (still is, but improving) HORRIBLE.  I was always concerned about anemia.  For a long time he pretty much only consumed milk, bread, occasionally some small amounts of (fortified) cereal, banana, some fruit puree, and no vitamin.  We had a lot of bloodwork done (looking for deficiencies) and no anemia, thank goodness.  

On the "is it every day", with my son it sure is.  He has some better days but there is no mistaking it.  Sometimes being sick will lessen it, as long as he doesn't feel totally horrible, because it mellows him out.  His is most obvious because of his speech -- the things he says, and repeats, and his inflection.

macchiatto

My son doesn't have a definite Dx but his ASD-like quirks and behaviors definitely come out a lot more some days than others depending on his energy level, hunger, sensory overload, context, etc. He also does much better in structured, familiar situations or with indulgent adults.

FWIW, he's also gotten mixed feedback from teachers, EI's, and therapists in terms of whether he might be on the spectrum or not.

bliss611

DS is on the spectrum but no anemia. I believe that can be from limited diets and his wasn't until very recently. Low muscle tone is very common - DS has low tone in upper body, trunk, and lower body.

You should get both school and med evaluation. DS has his school one done and is receiving targeted services in school (integrated classroom). I am still waiting for the dev-pedi appointment for a medical dx. I just want to have more input from physical perspective - help with diet, nutrition, etc. It will also allow us to use insurance for supplemental therapy when school therapies are not there (summer) or not enough.

DS is high-functioning and very mild show of symptoms in the sense that others rarely realize he is on the spectrum. But to providers, it is obvious. And now having read so much about ASD, I see manifestations of ASD in a lot of the little things I didn't even notice before the dx. He is extremely talkative. And when he rambles on about tv shows, etc people think he is excited about the show while it is echolalia.

Yes, some days are better than others. On the really good days, we see very little of his quirks. Bad days, we have meltdowns. Most days are somewhere in between. I don't think sleep, eating properly, having enough physical play and quiet (and now also a suitable sensory diet) give us those rare good days where you don't notice his sensory issues & echolalia. But those factors do help us avoid the bad days for sure.

marchbaby

My DS does not have Autism but has anemia issues.  He was diagnosed with ADD and was having what we thought were absence seizures.  While we were in the process of trying to change insurances so we could get tests done to confirm or rule out the absence seizures I asked if we could get general bloodwork done.  He was shown to be anemic and we started him on iron.  All of his ADD symptoms and "absence seizures" went away.  After being in iron twice a day for 4 months we stopped the iron and just gave a multivitamin and his ADD symptoms all came back. Started on iron again and they went away.  It is amazing the difference that the iron has made!  His 2nd grade teacher told us we should medicate for ADD and his 3rd grade teacher (we started the iron the summer between 2nd and 3rd grade) said she absolutely do not believe he has ADD at all. His sports coaches all commented on his improvement as well,  We are just going to keep him on iron. I haven't tried to reverse the ADD diagnosis b/c I figure if we ever have any problems and need an IEP or something it will be easier to still have it on file then trying to re-diagnose with the schools etc. 
Its not a diet thing as my son eats red meat, lots of spinach etc.  Our pediatrician said some people just can't process iron and he is one of them.  We then had my younger son tested and he is also anemic.  I also did some research after we noticed the improvement and there is research that shows some kids with ADD are actually just anemic.  So happy we stumbled across that diagnosis!

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