Asperger's Syndrome & Autism Spectrum Disorders

[Menolly]

Hi all. I haven't really read anything in this thread, but I hope to soon.

Anyway, long story short, I think my son might be autistic. He's 16 months old. If I may, I'll post my thoughts from my LJ:

It's been deep down inside my core for the last 14 months. I've tried to talk with people about this, but everyone brushes it off. "He's fine!" "Look how well he's doing!" I've even avoided talking with my pediatrician, because I am ashamed. I am ashamed because I am not well-informed. I am ashamed that I may be right.

I think David is autistic. I've felt this since he was 2 months old. There are just certain signs that I would see and I would feel in my gut. He's autistic. I talked about it with Mike once, and he told me he didn't think he was. So for a long time I passed it off as normal baby behavior. Every once in a while I would feel it in my gut, as I was laying in bed, praying that I'm just being neurotic.

I would scour the internet for any and all information, and as the months passed he would hit more and more of the symptoms described. I'd shut the window closed and shut my mind off with it. He's not. Can't be. He's fine. Look how well he's doing.

Oh Jaz...been there, done that.

But I can't deny it any longer. Call it mother's intuition, call me crazy, call it whatever you want, but I can't deny it.

As I said in the other thread, mother's instinct is very strong. But, as Lore said, let the professionals diagnos.

There are just too many symptoms he has that coincide with being autistic:

One, he doesn't like to cuddle. I can't hug him without him squirming away. I can't hold him without squirming away. I can't kiss him without him shying away. He rarely kisses back. The most cuddling I can do with him is have him sit in my lap.

It may be a co-morbid of austim, Sensory Integration Dysfunction, and not autism itself. Try and get a referral to a SIPT (I think that's the acronym) ceritified Occupational Therapist. They are the most qualified for diagnosing and treating SID.

This is so hard, because as that site says, there are those who are understimulated or over stimlulated by sensations.

He has difficulty expressing his needs and wants. He doesn't point. He doesn't make gestures. He doesn't wave "hi" or "bye-bye". The only way I know he wants something is if he whines or screams. Example: I will ask him if he wants something, say a bottle, and he will whine or cry. He doesn't say "want ba-ba" or "ba-ba".

Again, children develop at their own speed. Discuss this with his pediatrician.

He has repetitive body movements: one is his hand flapping, and the other is his rocking. The hand flapping he usually does when he's happy, or in his high chair. The rocking he does when he's about to go to sleep, and just about any time lately. Especially in front of his fan when it's on.

He also has a fascination with repetitive movements. Wheels, especially. He likes to watch them turn. Pretty much anything that is repetitive he likes to do. Switching lights on and off, etc.

*sigh*

OK. Maybe. Follow your gut.

Monday I'm going to just call the pediatrician. I'm not going to discuss this with anyone.

I just want to know the truth.

Try and get referrals to an SIPT-certified Occupational Therapist for the possible SID, and a referral to a developmental neurologist. These are the professionals in the US who are most qualified to do this testing. Unfortunately, the waits to be seen are long, on average six months, by qualified specialists. But too many misdiagnosis are done by other types of practitioners.

Keep us informed. We're here for you.

[Mortice Root]

Jaz, I can't imagine the stress you're under. I hope eveything goes well.

Keep in mind, that some of the stereotypical autistic traits can be normal behaviors at various ages.

That being said, a lot of the behaviors you describe could be early signs of autism or another of the autistic spectrum disorders. Talk to his doctor. And make sure the doctor listens to you.

Recently, the AAP (American Acadamy of Pediatrics) has recommened that docs screen (with a survey) every child for austic type behaviors at 18 and 24 months of age. This means actually giving a survey to the parents to fill out, not just eyeballing the child's behavior in the office. One of the most useful screening survey is the Modified Checklist for Autism in Toddlers (or M-CHAT).

You can find it here:www.northshorelij.com/body.cfm?id=2869

It's meant to be used at a little older age (18 months) than your son is now, but it's one of the better tools in this age group.

Also, if he doesn't pass the screening survey, it doesn't mean he has an ASD, but that he is at risk, and requires more evaluation, probably by a pediatrician who specializes in developmental pediatrics.

As Menolly mentioned, there are other things that his behaviors could be indicators of, but you certainly have enough concerns to warrent a more thourough evaluation.

Menolly wrote

Keep us informed. We're here for you.

What Menolly said. Absolutely.

edit:Oops, I'm a little slow. I just saw your posts in the "How do You feel" thread, so my info here is probably not useful anymore. Sorry. Hang in there.

[Menolly]

*shaking with anger*

Mom says teacher let classmates vote autistic son out of class

By Colleen Wixon

Scripps Treasure Coast Newspapers

2:31 PM EDT, May 25, 2008

PORT ST. LUCIE

Melissa Barton said she is considering legal action after her son's kindergarten teacher led his classmates to vote him out of class.

After each classmate was allowed to say what they didn't like about Barton's 5-year-old son, Alex, his Morningside Elementary teacher Wendy Portillo said they were going to take a vote, Barton said.

By a 14 to 2 margin, the students voted Alex -- who is in the process of being diagnosed with autism -- out of the class.

Melissa Barton filed a complaint with Morningside's school resource officer, who investigated the matter, Port St. Lucie Department spokeswoman Michelle Steele said. But the state attorney's office concluded the matter did not meet the criteria for emotional child abuse, so no criminal charges will be filed, Steele said.

Port St. Lucie Police no longer are investigating, but police officials are documenting the complaint, she said.

Steele said the teacher confirmed the incident took place.

Portillo could not be reached for comment Friday.

Steele said the boy had been sent to the principal's office because of disciplinary issues. When he returned, Portillo made him go to the front of the room as a form of punishment, she said.

Barton said her son is in the process of being diagnosed with Asperger's syndrome, a type of high-functioning autism. Alex began the testing process in February at the suggestion of Morningside Principal Marcia Cully.

Children diagnosed with Asperger's often exhibit social isolation and eccentric behavior..

Alex has had disciplinary issues because of his disability, Barton said. After the family moved into the area and Alex and his sibling arrived at the school in January, Alex spent much of the time in the principal's office, she said.

He also had problems at his last school, but he did not have issues during his two years of preschool, Barton said.

School and district officials have met with Barton and her son to create an individual education plan to address his difficulties, she said. Portillo attended these meetings, Barton said.

Barton said after the vote, Portillo asked Alex how he felt.

"He said, 'I feel sad,' " Barton said.

Alex left the classroom and spent the rest of the day in the nurse's office, she said.

Barton said when she came to pick up her son at the school Wednesday, he was leaving the nurse's office.

"He was shaken up," she said.

Barton said the nurse told her to talk with Portillo, who told her what happened.

Alex hasn't been back to school since then, and Barton said he won't be returning. He starts screaming when she brings him with her to drop off his sibling at school.

Thursday night, his mother heard him saying "I'm not special" over and over.

Barton said Alex is reliving the incident.

The other students said he was "disgusting" and "annoying," Barton said.

"He was incredibly upset," Barton said. "The only friend he has ever made in his life was forced to do this."

St. Lucie School's spokeswoman Janice Karst said the district is investigating the incident, but could not make any further comment.

Vern Melvin, Department of Children and Families circuit administrator, confirmed the agency is investigating an allegation of abuse at Morningside but said he could not elaborate.

...oh...my...g-ds...

[Skyweir]

oh that's appalling .. just soo awful .. what on earth possessed that teacher to undertake to ridicule and humiiate that student so cruelly?

I didnt realise that school was a democracy .. not even in the democracy we live in do we get to vote members of the community OUT of sociality in fact there are laws prohibiting such behaviour.

on what planet do people think to treat others like this? planet nazi germany maybe .. or planet medieval place .. for gods sake

*apologies* feeling the rage about now .. lol .. just feeling the rage .. damn ignorant folk

its ok .. i'm good now

umm .. nah .. nope really not ... *very angry face*

[Menolly]

For anyone in Florida, and perhaps even southern Georgia for the St. Augustine date, this may be of interest.

www.fddc.org/news/wrightslaw_workshop/

Peter Wright is the attorney, with his wife Pam, who runs Wrightslaw.com. His seminars are usually way out of my reach. To be able to attend one for free, with materials provided, is awesome.

[JazFusion]

Just a quick note on my previous post:

My son was recently evaluated for a possible ASD by a neurologist (a wonderful one, at that), but was not diagnosed. He did say his speech was rather delayed, but nothing major to worry about right now. He has some friends now and we're very busy, which has helped his social skills to blossom. All in all, he's a happy kid.

[Menolly]

Wonderful!

I am of the belief that younger than seven is very young to diagnose the more milder shades of the spectrum. Continue to do what you're doing and keep us informed.

[Mortice Root]

Fantastic news, Jaz.

[Mortice Root]

(Does double posting still count as a bad thing if it's 5 months apart? )

Anyway, I just read what I thought was an excellent book on ASDs. "Autism's False Prophets: Bad Science, Risky Medicine and the Search for a Cure" by Paul Offit, MD. It was a chronological review of the varying theories behind autism from "refridgerator moms" to thimerisol; a look at the research that started those theories, and a look at the research that ultimately refutes the majority of them. Offit also goes through the varying therapies that have been tried, from facillitated communication and secretin injections to chelation, hyperbaric oxygen and vitamin injections. He also spends some time on the current state of research and the current legal status of class-action lawsuits brought before the vaccine court.

So, yeah, I said the word "research" quite a few times in that last paragraph. But it is still a very readable book - in fact, it was hard to put down, and Offit does a good job explaining things so that you don't need advanced science training to follow what he's saying.

I also liked the way that his book tried to be a "facts-only" type of book. He simply presented the facts behind the various studies and therapies, in a relatively emotionally free way. No derrogatory comments about people who he disagreed with, even when, IMO, it would have been justified (as in the case of the anti-vaccine activists who have threatend his children, or directed to researchers that have been shown to have falsified their data). Having a relatively even keeled presentaion is a rarity for an issues as emotionally charged as this one, so he deserves some props there, too.

Plus, all proceeds from the book go to autism research.

So I think it's worth checking out, if anyone's interested.

[[Syl]]

New research brings autism screening closer to reality

New research published today will bring prenatal testing for autism significantly closer, prompting experts to call for a national debate about the consequences of screening for the disorder in the womb and allowing women to terminate babies with the condition.

[Menolly]

Oh...
Oh my...

[Menolly]

For anyone on Facebook in the States, whether one of my friends or no, please consider signing...

Illume Eltanin (Menolly) is the 2,738th person to sign the petition Health Care “Reform” That Fails to Stop Autism Insurance Discrimination is Unacceptable.

Check it out: causes.com/p/226/16576301?m=29694f39&prs=01d

For more information regarding this, please visit Autism Votes

If you are not on Facebook, you can still take action. Please go to Autism Votes: Take Action on Federal Autism Insurance Reform!

*double posted in the Facebook thread in Gen Disc*

Much thanks in advance.

[Menolly]

PBSParents, a branch of PBS.org launched an Inclusive Education site under the Education tab. There is a separate section regarding Autism Spectrum kids. I'll be watching the development of this site with interest...

[Menolly]

B"H we have never needed an AAC (alternative augmentative communication) device for Beorn. But there were several non-verbal children who had appointments at his rehab center the same days and times he did. I remember I connected with one boy in particular. His face would light up and he would rush over to give me a hug as soon as he spotted me.

Anyway, the point of this post...

TapToTalk

Most of the non-verbal kids I saw were given laminated custom created printed pages that were assembled in to flip books of pictures they would point to when they needed to communicate. I think many of these kids were taught sign language, but the books were used to communicate with the general public who never bothered to learn it. As they got older, many of the kids started rejecting using the books, seeing them as infantile.

But tell me, what child would not want an official reason for carrying around their Gameboy DS? And compared to other devices, it really is affordable.

Brilliant!!

[Menolly]

Interesting.

Are there tests to determine glutathione levels before beginning such a treatment program?

Chelation Therapy Drug Found Safe And Beneficial For Children With Autism

Two studies published by the Southwest College of Naturopathic Medicine in the October issue of BMC Clinical Pharmacology investigated the use of oral dimercaptosuccinic acid (DMSA), a prescription medicine approved by the FDA for treating lead poisoning, and used off-label in these studies for treating heavy metal toxicity in children with autism.

In the investigations, DMSA was given to 65 children with autism (ages 3 -8 years) to determine its effects. The researchers found that DMSA dramatically increased excretion of several toxic metals, including a 10-fold increase in excretion of lead. In terms of safety, the study found that there was no adverse effect on standard safety tests, including no effect on kidney or liver function.

Of greatest interest was a surprising finding that DMSA therapy had a dramatic effect on glutathione levels. Glutathione is the body's primary defense against toxic metals, and it was very abnormal in children with autism. Treatment with DMSA for only 3 days normalized glutathione levels for at least 1-2 months in almost all children.

DMSA therapy also had promising effects on possibly reducing some of the symptoms of autism, including improvements in language, cognition, and sociability. However, a formal randomized double-blind placebo-controlled study is needed to confirm those results.

The study was led by Matthew Baral, N.D., Chair of the Department of Pediatric Medicine and Associate Professor of Pediatrics at Southwest College of Naturopathic Medicine (SCNM) and James B. Adams, Ph.D., Adjunct Professor in the Division of Clinical Sciences at SCNM and Science Director for the Autism Research Institute.

"Toxic metals are a common problem in autism, and I have personally observed that many of my patients with autism have greatly benefited from DMSA therapy. I hope this data answers the question that many physicians have: whether chelation is safe and effective, and clearly it's both," says Dr. Matthew Baral. "This study shows that DMSA therapy is safe and effective, and should be considered as a possible treatment for children with autism who have significant body burden of toxic metals," says Prof. James Adams.

[[Syl]]

Hormone oxytocin offers hope in treating mild autism

People with Asperger syndrome, a mild form of autism, dramatically improve their social learning skills and spend more time gazing at pictures of faces after inhaling a whiff of the social-bonding hormone oxytocin, researchers have found.

The study, published Monday in the Proceedings of the National Academies of Science, is the first to show the effects of oxytocin, a hormone that promotes mother-infant bonding, socialization, trust and cooperation — in people diagnosed with Asperger's.

It led some experts to speculate that supplementing the normally low levels of oxytocin in people with autism spectrum disorders may help them to detect subtle social cues and engage in smoother social interactions.

[Avatar]

I was reading that too the other day. Interesting.

--A

[Menolly]

Ooo, I haven't seen that one.
Thanks, Syl.

[JazFusion]

For those that are on my FB already know this, but my son was recently diagnosed as having Autism Spectrum Disorder this week. Never let anyone fool you; a mother's instinct is the strongest feeling known.

I know he was tested at 16 months, and a neurologist gave him a clean bill...but there were some nagging thoughts and doubts. Now that we have a proper diagnosis, we hope to get him the help he needs.

I am going to start a blog about everything. If nothing else than for my family's sake. I've been getting more "He doesn't seem like he has autism" than I can shake a stick at.

We're still in the early stages of everything. He's going to be going through a hell of a lot of testing to rule certain things out.

[Menolly]

{{{Jaz}}}

I am of the old school of thought that while some lower functioning types of ASDs can be found in infants and toddlers, that those on the higher functioning scale of the spectrum can not be properly diagnosed until at least seven or eight years old. I will admit I have not kept current with all of the advances in testing, but it would surprise me if some higher functioning, milder manifestations of ASDs can be properly diagnosed before the age of five, at the earliest.

Be that as it may, right now the thing to focus on is that you all are finally starting to get answers, and intend to follow through on that. Stay focused and learn what your son's rights are via IDEA, and what you are entitled to know and request for him as his parent. I recommend starting at Wright's Law for the fundamentals, at least. The site is huge; but you will find answers to just about everything regarding schools and testing there.

Keep on posting as you go through this. We are here to support you and offer guidance as we can.