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Lorri Unumb to Host “My Child Has Autism: How Do I Get Insurance?” Webchat

February 22, 2012 19 comments

Please join us Monday February 27th for our first webchat featuring the Government Relations team: “My Child Has Autism: How Do I Get Insurance?” The webchat will be hosted by Lorri Unumb, Esq., our Vice President for State Government Affairs.

Held at 8 p.m. Eastern (7 Central/6 Mountain/5 Pacific), this “office hour” will connect families looking for answers about their health insurance with Ms. Unumb, who is regarded as one of the nation’s pre-eminent experts on health insurance and coverage for the diagnosis and treatment of autism. Ms. Unumb wrote groundbreaking autism insurance reform legislation enacted in her home state of South Carolina in 2007 and has since led the way for the enactment of similar laws in 27 other states. Her most recent honor was the 2012 Leadership in Advocacy Award presented by the California Association for Behavior Analysis.

Ms. Unumb welcomes your questions about how autism insurance coverage works in your state, understanding self-insured policies and the impact of the new federal health care law on autism coverage. However, the guidance provided on the webchat is not meant to substitute for the information provided by your employer’s human resources department, your insurance agent or attorney.

Dr. Beth Ann Malow, MD, Sleep Chat Transcript

February 21, 2012 6 comments

12:50
Hi Everyone! We are going to begin in about 10 minutes!
12:53
Thank you SO much for joining us. After the chat, we’ll be posting the transcript on the Autism Speaks science blog:http://blog.autismspeaks.org/category/science/
12:55
Comment From Kristie Vick

thank you for this!

12:57
Our hosts today are Dr. Beth Ann Malow, M.D., of Vanderbilt University Medical Center, and ATN Program Director Nancy Jones, Ph.D.,
12:58
Comment From Ana

Is there any thing like maybe a foutain or something with nature sounds that can help them to sleep?

12:58
Hi Ana, This is Dr. Malow. Great question. I often recommend white noise machines or sounds of nature as they can help adults and children on the spectrum go to sleep. It works by distracting people so they don’t focus on not sleeping. A fan can also be effective.
1:01
Comment From myra

hi, my daugter age 10 has always had her days and nights flipped, recently her MT suggested melatonin ,her family doctor ok’d it to try and it does work wonders for her. My question though is this – I worry about long term use and are there other methods to help her besides melatonin? And yes we tried baths, lavender, rubbing, and most of all the other normal sleep helps? thank you.

1:02
Hi Myra– This is Dr. Malow. I am glad the melatonin is working. It is generally safe long term, although I would recommend that you look at our Sleep Booklet (you can find a link here) which has basic sleep tips for children with autism spectrum disorders. You may find some strategies there that help your child sleep.
1:06
Comment From Lise

I have a daughter who has been diagnosed with sleep apnea. We have a lot of trouble getting her to use her CPAP machine regularly. Any suggestions? She is thirteen, verbal and is not quite high functioning, but does well overall.

1:07
CPAP treatment for sleep apnea really works and the good news is that you will likely see lots of benefits once Lise is using the machine regularly, including sleeping soundly at night and being more alert during the day. To get used to CPAP, a respiratory therapist or sleep technologist can be key to success. They can help you and Lise get acclimated to the machine. I would ask your sleep specialist who diagnosed Lise if there is anyone at the sleep center who could help with this.
1:07
Hi all,
You won’t see questions post until they are selected to be answered. We’ll try to get to as many as we can. Thanks.
1:08
Comment From marie fauth

do you know what are the scientific research about sleep disorders and autism ?

1:10
Dear Marie– There is a lot of exciting scientific research going on about sleep disorders and autism! We are looking at medical causes that interfere with sleep, such as GI issues and anxiety, as well as brain chemicals that affect sleep, such as melatonin. We are also looking at issues specific to those with autism– increased sensitivities to noise and touch, difficulty understanding parents expectations about sleep. All of these causes can be addressed. Be sure to seek advice from your pediatrician who may likely refer you to a sleep specialist or autism specialist.
1:12
Comment From dee

my 6 yr old as been precribed 3mg melatonin an 3 mg m/r melatonin but it wears of at two so she is a asleep from 7 till 2 its really starting to wear me down as she i have two other children to an non of us are sleeping an i really need some help with it as iv been fighting for two years an all they do is keep changing her sleeping tablets :o(

1:13
Dear Dee– I would ask your pediatrician for a referral to a sleep specialist who is comfortable with children on the spectrum. There are lots of things to try. The first thing I would want to be sure of is that there isn’t a medical reason why your child is waking up at 2– GI issues, breathing problems, etc. Also, there are some behavioral strategies that can be tried to return your child to sleep– some are in the sleep toolkit. The important thing to remember is that there are lots of things to try– you just need to get under the care of someone who is familiar with sleep problems in autism.
1:16
Comment From Sebree

My son is 16 and up until he reached puberty, we had no problems getting him to sleep in his own bed. He now falls asleep on the couch and when we go to bed he ends up on our bedroom floor. He is a very light sleeper and wakes up immediately if we wake up. We give him melatonin, which seems to relax him at first and get him in the sleep zone, but once he wakes up in the middle of the night, he is up all night. Today, we are going to try to get him active outdoors, since he doesn’t do anything physical.

1:17
Dear Sebree– Puberty and adolescence can definitely be a challenging time for sleep! You are absolutely correct to try to increase his daytime activity, as exercise can make a big difference. Also be sure he isn’t using caffeine especially in the afternoon and evening. You might also want to try controlled release melatonin (comes in a pill as the coating is what makes it controlled release– so he will need to be able to swallow pills). We are working on a sleep brochure for teens that will be released in the future.
1:19
Comment From Maritza:
Hi Dr. Malow, Is prolong use of Melantonin harmful? If so, what is best to use. My 18 year old son (preparing to go away to college) averages six to six and a half hours of sleep. Also, if Melantonin is OK to use – What is the best brand? Thanking you, Maritza
1:20
Hi Maritza. This is Dr. Malow. Melatonin is generally not harmful if you use a reputable brand, however, it is important to seek the assistance of a sleep specialist or pediatrician with experience in sleep. This is to be sure that there aren’t any medical issues contributing to difficulty sleeping. Also, keep in mind that melatonin helps with falling asleep quicker but doesn’t help as much with how many hours of sleep a person gets. We used Natrol brand melatonin in our clinical trial as it was approved by the FDA for this study, although there are other reputable brands out there.
1:20
Comment From Guest

My son is 13 years old and sometimes does not go to sleep for up to 4 days at a time. I have caught him watching tv and playing video games. His school calls and says he is sick he is white as a bed sheet…. What do I need to do?

1:21
This is a great question and several others have asked questions about TV/’video games as well–so I am hopefully addressing lots of others with this question. It is important to realize that TV/video games can be extremely stimulating– not just the content but also the flickering lights, which interfere with our natural levels of melatonin. I recommend turning the TV/video games/phones/etc off at least one hour before bedtime and making sure individuals engage in non-stimulating/relaxing activities before bed. Getting your son to understand this may be challenging– this is where your pediatrician may be able to help. If removing the electronics doesn’t help, ask for a referral to a sleep specialist.
1:22
To all-in addition to the Sleep Toolkit, you can also check out a recent blog on Sleep that provides information about sleep management.Toolkit
http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use Blog on sleep management
http://blog.autismspeaks.org/2012/02/17/my-son-has-sleep-problems-what-can-help/
1:23
Comment From Wyayn

I work at a Transition program with students 18-21. We help students with autism learn work, independent living, and post-secondary skills. Many of our students come to school very sleepy. We spend much of our day talking about alerting strategies to help them stay awake. Parents report to us they have difficulty sleeping at night. How would you recommend we work with parents to help them sleep at night so they can be awake during the day and focused on school?

1:24
Dear Wyayn– it is terrific that you want to be proactive with these parents and that they are in close communication with you! I would suggest you set up a workshop where you can bring in a sleep specialist to work with the parents for a day and provide information on how to help their children sleep. You may also want to engage the students in the workshop as well as they will feel empowered and engaged in the process.
1:27
Comment From Amanda

My son is on remeron at night which we switch up tp clonidine I worry about him getting addicted to the point where he won’t sleep without meds So I some times switch he over to melatonin. If he has no meds he with stay with just as much energy as if he just woke up other times the meds make him relaxed but he still stays up till around 2-4am Are theses medx going to be something he has to take forever he is 7 now and has been on and off them since he was 5

1:28
Dear Amanda– Excellent question. I would recommend you go back to basics and work with a child sleep specialist to try to identify the cause of your son’s problems with sleep. See previous answer about the scientific causes of sleep problems in autism– medical, biological, behavioral. Once the cause is identified, the most appropriate treatment can be prescribed rather than just trying a bunch of different meds.
1:29
Comment From Christy Guitard

My daughter is 5 and has autism. She has had sleep problems since a very young age. After trying many methods, her doctor recently started her on clonidine, and we found that 0.15mg (a tab and a half) helps her sleep from about 7:30pm-6am on most nights. Some nights she still awakens around 2 or 3, but these are rare. We have not noticed any side effects and she has been taking this dose for about 4 months now. As she grows, is it likely she will become more tolerant to the drug? Also, are there long term side effects you have seen in kids on the spectrum that take this drug? Thank you!

1:30
Dear Christy- It is great to hear that your daughter is sleeping well on clonidine and not having any side effects. As she gets older, the dose may need to be increased. I have not seen any long term side effects but I have occasionally seen this medication and others to stop working, so I would recommend that you look at the sleep toolkit and start trying those strategies.
1:32
Comment From Elizabeth Mills

We r n the process of getting on with the agency for persons with disability because the JDC has ordered our 17 asperger’s son 2 be place n residencial care 2 help him now get 24 hr help & conseling n the many problem areas he has hopefully before turning 18. Do u have any advice? This is all so new 2 us

1:33
To Elizabeth and others-While the focus on our webchat today is on sleep, the Autism Response Team members from our Family Services department can provide information on services and other resources.
1:34
Every Wednesday at 3pm EST Family Services Office Hours is held! Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.
1:35
Comment From Chris

Do you have any strategies on getting a 6 year old to sleep in his own bed? He has always slept with his mother and when we have tried to put him in his bed at night he wakes up immediately and will usually not go back to bed. If he wakes up at night I will try to take him out of the bed so my wife can get some sleep but he will just have a complete meltdown and nobody gets any sleep. He is given melatonin and Zertec, which helps him fall asleep. He will not take any other type of medicine that cannot be hidden in a cup of milk.

1:36
Dear Chris– Lots of parents would like to help their children learn to fall asleep in their own beds so your question is very relevant! If your son can learn to fall asleep on his own, he will likely be able to stay asleep in the middle of the night or be able to go back to sleep easier. To help him learn to fall asleep on his own, I would start by finding a book for your child to read about learning how to sleep in his own bed (there are several out there — “I want to sleep in your bed” by Harriet Ziefert is one) . It helps to start out by having mom sleep in a mattress right next to your son, and then move it a few inches away each night until they are sleeping in separate spaces. Be sure to couple this with a reward program for your son.
1:37
Also, please join us on March 1st at 3pm EST for ‘The Doctors Are In!’ Hosting will be, Head of Medical Research Joseph Horrigan, M.D. and Dr. Jose Polido, a dentist with at the ATN center in Los Angeles!
1:40
Comment From Mel

How can I find a child sleep specialist? (Our pediatrician does not seem to have any recommendation.) It also seems a little excessive for my son’s situation… he is a very restless sleeper and wakes in the morning not feeling rested; but he is not as extreme as others have described, as far as being up for hours. Melatonin helps, but not all night.

1:42
Dear Mel– Below is the info on how to find a accredited sleep center which has pediatric sleep specialists. You can also look at the Autism Treatment Network website as each of these 17 sites across North America has a pediatric sleep specialist with autism experience involved.
1:44
Comment From Helena

Hello, my son is 32 years old and he started having seizures 8 years ago. He has problems falling a sleep. He will lay down but wont be sleep. This can go on for a two til three days then he will have a seizure. Do you have information on a doctor that specializes in adult autism in pennsylvania

1:46
Helena-Dr. Jones here. Our ATN center at University of Pittsburgh, may be able to help find you a recommendation for a doctor in Pennsylvania who works with adults. You can contact them at (412) 235-5412. You can also contact our ART team.
1:47
Comment From Angela

what about adults and children with ADD/ADHD and sleep i am now adult with moderate ADD mild ADHD i struggle sleep since i was baby i have troubles falling asleep my mind wont shut off or stop thinking i would write my problems or thoughts down dont work i take malentonin

1:47
Dear Angela– ADD/ADHD, like autism spectrum disorders, is also associated with sleep problems. Be sure that any medication you are taking for ADD/ADHD isn’t too late in the day when it could be interfering with sleep, and also be sure there isn’t any other sleep problem going on at night, like a breathing problem. Your primary care physician can help with that. Writing your thoughts down is a great strategy– you might also try meditation or other relaxation techniques to help promote sleep.
1:48
Comment From Ana

We are about to move into a new place that has rooms for each of my two children. My son who is a aspie has to sleep with someone at all times or he wakes up and doesnt sleep. We are looking into getting a rescue dog that will maybe sleep with him in the bed, Do you think that this will help? Has there been any study on the dog/pet influence?

1:50
Dear Ana– I don’t know of any studies, but I think that a trained assisted dog is an excellent idea as it may help your son be less anxious at night. Anxiety is a big cause of sleep problems in kids with autism.
1:51
Advance question from Cathy:
Hi, My son is 6 ½ years old and has been diagnosed with ADHD and Asperger’s and shows symptoms of OCD, ODD, Anxiety, Sensory Integration Disorder. He takes a combination of Adderall XR 15mg, Adderall 30 mg, and Intunive 3 mg during the day. His day time hours at school are very good (finally!) but it’s the night time and first thing in the morning I struggle with the most. He has many meltdowns and tantrums, though he’s on a regular diet; blood test results have shown he’s got a higher gliadin level of 38. The medicines wear out of his body by 8:30pm usually, so he’s not on any medications until the next morning when I start his Adderall (XR and regular) again.
Once Daniel’s head hits the pillow, he usually falls asleep within minutes. Problem is, he’s up like 45 minutes later with night terrors. It’s terrifying because he sits in bed and just gives blood-curdling screams. When I go in to see what’s going on, he’ll start hitting, kicking, or punching me. I’ve heard that it’s best to leave him alone, but when I do that, the nightmare seems to last FOREVER. I’m a single working mom and need my sleep as much as he needs his!
What is the best way to handle his meltdowns/tantrums during the off-medicine times? What is the best way to handle his night terrors? Thanks
1:52
Hi Cathy. I would seek a referral to a pediatric sleep specialist as night terrors are very treatable, but must be properly diagnosed. We often will do a sleep study to document night terrors and exclude epileptic seizures. As for the meltdowns/tantrums, I would consult with an autism specialist, keeping in mind that improving sleep may also help these daytime symptoms.
1:52
Comment From Julie

Just joined, sorry i’m late. My 6 year old son has autism and tends to wake around 5 am. we really struggle getting him back to sleep. He is tired but isn’t understanding it’s still night time and bed time. any suggestions?

1:53
Dear Julie– In trying to help with early morning waking (5 am), it helps to figure out what time bedtime is. If bedtime is 8 am, you may want to see if your son can stay up a little later as that may help him sleep until 6 or 7 am. As he gets older, he may be able to entertain himself when he wakes up early. Kids with autism in general seem to need less sleep, so as long as it isn’t disruptive to the family, I wouldn’t be overly concerned.
1:55
Advance question from Richard
My son has trouble sleeping at night he gets up at least 2 or 3 times a night. But when he gets up he seems to be confused and kind of really knowing where he’s at. And the next morning he doesn’t remember even getting up! I was wondering if this is normal or does he have other issues than just having autism?
1:56
Hi Richard. This is Dr. Malow. I would be suspicious of confusional arousals (a form of sleep disorder similar to night terrors or sleepwalking) or possibly epileptic seizures. Would recommend seeking a referral to a pediatric sleep specialist.
1:57
Comment From Amanda

What is a sleep specialist and how do they identify problems?

1:57
Amanda– A sleep specialist is a physician who has been trained in sleep problems– it can be a neurologist, psychiatrist, pediatrician, or other specialist. Finding a sleep specialist who is trained in autism is challenging, but there are some excellent ones out there. Take a look at the link posted below for the Autism Treatment Network– each site has a pediatric sleep specialist with autism expertise.
1:59
Comment From Lisa

My 4 yr old granddaughter has a terrible time trying to fall asleep. She says shes afraid, she has terrible dreams, and sometimes will still be awake at 1-2am…She even is developing dark circles under her eyes because she isn’t sleeping. We’ve tried various things like bedtime stories, no TV for about 2 hours before bedtime, etc…Any suggestions?

2:00
Dear Lisa– Scary dreams can be really hard on a child! You are doing the right thing to try bedtime stories and limit TV before bedtime. Be sure she isn’t watching stimulating videos even earlier than 2 hours bedtime and that there aren’t any other stressors in her life. If not, you might want to talk with her pediatrician about whether she might have an anxiety disorder, which treatment can really help for.
2:01
Advance question from Lisa:
I have a non-verbal 8 year old son that has autism. He has been on clonidine for years but he still has a hard time staying asleep and he can have some “bad” days if he becomes too tired. Are there any new, safe alternatives that might help keep him asleep without causing him to be drowsy in the morning? He is learning to read, type and doing simple math, but these “bad” days seem interfere with his learning and his therapies, so I would really like to make sure he receives enough rest. Thank you guys for all you do for our children.
2:01
To Colleen-If you are asking about what early signs of autism are, I would suggest you check out our Learn the Signs page:Learn the Signs
http://www.autismspeaks.org/what-autism/learn-signs Info on autism
http://www.autismspeaks.org/what-autism
2:02
Oops. Here’s the answer to the advance question from Lisa…. If he can swallow pills, I would recommend controlled release melatonin. If not, gabapentin may be a good alternative. Be sure that you seek medical advice, however, for a couple of reasons—1. To be sure there isn’t a medical reason (GI issues, etc) for the night wakings and 2. To be sure that whatever medication is chosen isn’t going to interfere with his other treatments. Also, be sure you review our new sleep booklet as we include some tips for night wakings.
2:03
Comment From Linda

I suspect my grandson has autism. Any tips on how to approach my son with this?

2:03
To Linda. Dr. Jones here. We have a Grandparents Guide to Autism you may find useful. The link to this document will follow.You may also find these webpages helpful. They have information on the early sigsns of autism.Learn the Signs
http://www.autismspeaks.org/what-autism/learn-signs Info on autism
http://www.autismspeaks.org/what-autism
2:04
Thank you all SO much for joining us. Sorry we couldn’t get to all your questions.
After the chat, we’ll be posting the transcript on the Autism Speaks science blog: http://blog.autismspeaks.org.
Got more questions? Please join us next Thursday (3 pm ET/noon PT) for “The Doctors are In” webchat with our head of medical research child psychiatrist Joe Horrigan and guest host dentist Jose Polida, who practices with our ATN center at Children’s Hospital Los Angeles.

We’ve Reached 1 Million Facebook Fans!!!!

February 9, 2012 2 comments

Today we are proud to announce that we have reached 1 Million Facebook Fans milestone! We have had the pleasure of watching the page grow and evolve into what it is today. It got us to thinking… what does 1 million fans mean? Those 1 million fans are people who care about autism; people who are looking to share their stories and connect with others; they are people who want to make a difference.

On behalf of Autism Speaks, we would like to thank everyone who is a part of this very special community. Together, our million voices will be heard.

Tune in TODAY for Autism Speaks’ Analysis of the DSM-5

January 20, 2012 19 comments

Tune-in today to hear Autism Speaks’ leadership discuss the recently released analysis of the DSM-5, to be published in 2013, and hear about its potential implications for individuals to receive an autism diagnosis and appropriate services.

Read Geri Dawson’s blog post about the DSM-5, The Changing Definition of Autism: Critical Issues Ahead.

Watch Autism Speaks’ Dr. Andy Shih discuss the story on MSNBC “News Nation with Tamron Hall”

Autism America Radio – Saturday January 21st

January 20, 2012 1 comment

Autism America Radio welcomes special guests, author and athlete Rodney Peete and attorney Valerie Vanaman.  

Join hosts Matthew Asner and special guest host, author Monica Holloway for two hours of talk and interviews this Saturday 6:00 to 8:00 PM ET on Sirius/XM Family Talk Channel 131! 

People wishing to participate should call 800-679-7650 During the show or Tweet their questions to @Autismamericar. Listen online at http://www.live365.com/stations/autismamerica?play or as a podcast on iTunes! You can also visit Autism America Radio on Facebook!

Autism Speaks Partners with Sevenly for an Awesome Awareness Campaign!

January 17, 2012 4 comments

Autism Speaks has teamed up with Sevenly to create custom designed tee-shirts to spread awareness about autism from January 16th to the 23rd. This is a unique opportunity and won’t last long, so get your swag quick! Every item sold helps the family of an individual with autism in a time of need. Through these funds, we can provide emergency financial aid during times of crisis or unplanned hardship through our Autism Cares initiative!

Sevenly donates seven dollars from every shirt it sells to a different nonprofit organization each week. The company also raises awareness for the nonprofits it partners with through its social media platform, which encourages supporters to like the week’s campaign on Facebook and share it on Twitter.

Weekly Whirl – Tattoo Time!

January 13, 2012 22 comments

If anyone knows how hectic life can get – WE DO! That’s why we have created the Autism Speaks Weekly Whirl to fill you in on all of the highlights of the week! The last thing we want is for you to be left out of the loop! Please share with friends and family to spread the word about all of the exciting things going on in the autism community. Keep in mind, these updates aren’t limited to Autism Speaks — we will be featuring news from across the community.

Who says you can’t be creative with spreading autism awareness? These awesome folks submitted photos of their tattoos – yes, you read correctly, TATTOOS for their loved ones who have autism. Have a look, tell us what you think!

Melissa Fuller

“For my son Brayden. Just done yesterday. Done in invisible ink that will glow. The tattoo artist said people wil wonder where the key is, I said we are still searching for it.”

Julie Burke

“♥ :)”

Jennifer Rae Sawyer

“Got this for my middle child, Isaiah, who has autism. He is such a blessing! :)”

 

Korban Trautman

“Got this for my brother a few years ago, just felt like sharing.”


Tim Greninger

“For my God Daughter…..”

 

Diagnosing Psychiatrists: Making Doctors Work for You

November 28, 2011 11 comments

John Scott Holman struggled with undiagnosed autism for nearly 25 years. His diagnosis has enabled him to embrace his individuality and move forward. He writes and speaks publicly about his life with autism, hoping to inspire greater understanding and acceptance. Visit his Facebook page here.

Since my early adolescent years I have been a reluctant guinea pig for the psychiatric industry. I have been repeatedly misdiagnosed, overmedicated, poked and prodded. I’ve had Bipolar Disorder, Generalized Anxiety Disorder, Major Depressive Disorder, etc… I’ve been on every sedative, stimulant, anti-psychotic and anti-depressant on the market. I’ve endured unbearable side-effects and withdrawal symptoms. I’ve taken drugs to treat the side-effects of drugs that I was taking to treat the side-effects of other drugs! More than once, I’ve wanted to beat a shrink to a bloody pulp, but was too comatose to do so. After a few years of seeing these quacks, I went from an admittedly eccentric kid to the drooling, incoherent lovechild of Charlie Sheen and Anna Nicole Smith.

How exactly did this happen? How did one doctor after another diagnose me with such a wide variety of mental illnesses? Several decades ago a diagnosis of Bipolar Disorder, then called Manic-Depression, typically resulted in commitment to an institution. Now Bipolar Disorder is often nothing more than a trendy label, worn with pride by actors, artists and the like… ” I’m into sculpture and Kabbalah, I smoke American Spirits and I’m Bipolar.” Give me a break!

I was once seeing a psychiatrist who eyed me suspiciously for signs of mania during my every visit. I finally asked him, “How many times do you have to see me before you realize I’m always like this?”

“Well,” he said, “Maybe you’re the kind of bipolar patient who is always manic and never depressed.”

“Are you saying I’m unipolar? Is that actually a diagnosis? Maybe I’m just hyper…”

As many of you know, I’m autistic. This diagnosis is unquestionably valid and has radically altered the course of my life and the way I view myself. How did I go through a decade of constant psychiatric treatment without anyone catching on? Well, for starters, there are a limited few pharmaceuticals approved for the treatment of autism.. There are literally dozens of medications used to treat the symptoms of Bipolar Disorder. You do the math…

This rampant tendency towards over diagnosis belittles the struggles of people who actually have these disorders, and instead of treating symptoms, often creates them in individuals given extremely powerful and dangerous drugs without due cause. I never had an anxiety disorder until I became dependent on anti-anxiety meds called benzodiazepines, which were originally prescribed to me to treat the agonizing side-effects of an anti-psychotic. I guarantee that anyone prescribed escalating doses of sedatives will develop some major issues. But the more issues you have, the more issues you will seek treatment for. The psychiatric industry doesn’t stand to make much money from a patient without psychological complaints.

An equal but opposite problem is caused when perfectly valid treatments are withheld from patients for irrational reasons.  Most doctors receive the majority of their pharmaceutical knowledge from representatives of the pharmaceutical companies. Also, many doctors receive kickbacks from big pharma for prescribing their meds. Because of this, tried and true treatment options are passed over in favor of “the next big thing.” However, these new pharmaceuticals have not yet been proven to be any more effective than their more affordable predecessors, if, indeed, they are any different at all.  The pharmaceutical industry is a lot like Hollywood; the latest blockbuster is usually just a sequel or remake. Drugs that have worked for decades are often tweaked, reformulated, renamed and presented to the public as something revolutionary (this is the case with a myriad of extended release medications, whose instant release counterparts are often just as effective for a fraction of the cost).

When seeing a shrink, it is important to check out the office swag; if the clock on the wall, the paperweight on the desk, and the pen in the doctor’s hand are all labeled with the name of a certain drug, chances are you will find that name on you prescription. Sadly enough, that doctor probably found the same name on their ticket for an Alaskan cruise.

If you find any of this alarming, you probably haven’t been lobotomized by the psychiatric industry or are currently too overmedicated and uniformed to know the difference. If you are seeing a psychiatrist or plan to do so, please, save yourself money and heartache; do your research! No one should go through the hellish and unnecessary experience that I did. Are you sure your diagnosis is correct? Are you taking the most effective, affordable, and time-tested medications?

Ask plenty of questions. Make suggestions. No patient should ever be afraid of their doctor. Remember, your doctor works for you!

I am by no means an opponent of pharmaceutical intervention, and have received enormous benefit from the right medications.  Unfortunately, the road to psychotropic success was unnecessarily long and painful.

It seems the psychiatric industry suffers from some nasty symptoms, including reckless disregard for the safety of others, lying, lack of remorse, and consistent irresponsibility.  According to the DSM-IV, these symptoms indicate a diagnosis of Antisocial Personality Disorder.  Now, I’m not a doctor (I just play one in real life) so I can only suggest that the psychiatric industry be given a diagnosis of APD and prescribed…  a dose of their own medicine.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Family Services Office Hours – 11.10.11

November 10, 2011 1 comment

Office Hours easily connects families to a wide variety of autism-related resources, including Family Services Tool Kits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code.

Family Services Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.

The Office Hours sessions are staffed by ART coordinators who are specially trained to connect families affected by autism to resources.

2:54
Hey Everyone! We will be on in a few minutes!
2:58
Ok! We are here and happy to start taking questions!
3:00
Comment From Melissa

How much information is available on the possibility of autism being genetic? From parent child?

3:02
Hi Melissa! Alycia Halladay, Ph.D., hosted a LIVE chat dealing with genetics! Here is the transcript!http://blog.autismspeaks.org/2011/08/16/increased-risk-live-chat/
3:02
She was also interviewed on CNN about autism and siblings, which you can see here:http://blog.autismspeaks.org/2011/08/18/siblings-news-coverage/
3:03
In addition, our Chief Science Officer Geri Dawson did a LIVE Chat about the Genetics of Autism. She is great! Here is that transcript: http://blog.autismspeaks.org/2011/10/27/transcript-dawson-schere/
3:04
Our science team regularly posts blogs explaining new research findings about autism. Stay connected by checking up with us atblog.autismspeaks.org!
3:04
Comment From Shannon

Is PDD-NOS actually a form of autism?

3:04
Hi Shannon! The answer is yes! Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) is one of the autism spectrum disorders and is used to describe individuals who do not fully meet the criteria for autistic disorder or Asperger syndrome.
3:04
You can learn more about it here!http://www.autismspeaks.org/what-autism/pdd-nos
3:05
Comment From Kathy

Hi! I am the mom of a 10 yr old High functioning son and I am having trouble finding any help since he seems so “normal”. He gets no help in school and limited help through his dr’s. Is there help out there for High functioning Aspy’s?

3:05
Hi Kathy! We have a great Asperger Syndrome/High-Functioning Autism Tool Kit. It is mostly for newly diagnosed families but contains lots of tips and information for all families of children with AS/HFA. http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:05
We also have plenty of resources on our website related to helping people with Asperger Syndrome. Here are a few great links:
3:06
Our Resource Library contains tons of great books, magazines, online software, toys, game, apps and much more!www.autismspeaks.org/family-services/resource-library
3:06
Comment From Haley

Hi! I was just wondering where I could get information or if there was someone I could talk to about careers in autism? I am in college right now and I would like to talk to someone who could help me make sure I’m on the right path….

3:07
Hi Haley! That is so great you are interested in a career in autism. If you are looking to provide direct services, I suggest you search our very extensive online Resource Guide. You can click on your state and find service providers in your area in lots of different fields (schools, therapists, after school programs, recreation activities, etc.) Those providers will most likely have lots of information to help point you in the right direction!www.autismspeaks.org/resource-guide
3:08
Comment From Brenda

I have been reading a PDD and ADHD and how some ADHD medicines, actually help with the PDD. Is there any information you can share on this?

3:08
Many families of children with autism spectrum disorder (ASD) are faced with the option of using medicines to help treat their child’s challenging behaviors. This is a tough medical decision and there is no one right answer.
3:09
Comment From Shannon

I have read the forum in autism speaks and it is great. I just wanted to make sure that when I say my son has autism that I am not exaggerating. It sure feels like it!!

3:09
Shannon, we also have a great Learn the Signs campaign and an Autism Video Glossary that contains lots of videos that show symptoms of autism, compared to neurotypical children. They have been really helpful to so many people.
3:11
Comment From Jane

My son’s father and I are divorced and his father would like me to have him and his nt brother for extended time (for respite) however I don’t have the home which can accommodate his needs. He’s registered with DDD but they are unable to help. Are there any other resources for me to look into?

3:13
Hi Jane – that sounds like a very tough situation you are in. Your ex-husband needs to stick with the rules of the court. You can search our Resource Guide by your state to find a lawyer in your area as well as respite care options.http://www.autismspeaks.org/resource-guide
3:13
Hi Shelly. You are not alone! We hear from lots and lots of families who have grandparents who do not understand the diagnosis or are unwilling to accept it. Everyone responds to the diagnosis differently and many people need time.We would suggest gradually introducing your parents to the idea, and emphasizing how important it is to you that they understand and are able to help you. I’m sure they love their grandchildren so much so will understand that the way they are treating him isn’t working to his benefit.
3:13
Comment From Shelly

I have a three year old with PDD-NOS. I am having a hard time trying to educate my parents (his grandparents) on the subject. They are still in denial and I have even given them the tool kit for grandparents. They refuse to even look at it. They do not even want to make changes in the way they act arond my son (which makes him digress after every one of their visits.) What more can I do?

3:13
Hi Shelly. You are not alone! We hear from lots and lots of families who have grandparents who do not understand the diagnosis or are unwilling to accept it. Everyone responds to the diagnosis differently and many people need time. We would suggest gradually introducing your parents to the idea, and emphasizing how important it is to you that they understand and are able to help you. I’m sure they love their grandchildren so much so will understand that the way they are treating him isn’t working to his benefit.
3:14
Perhaps you want to speak to one of your parents who may be more willing to listen. It is important to stress that a family’s understanding and willingness to help their loved one with autism is crucial to the child’s progression and happiness.
3:15
Comment From elizabeth

I have a non verbal 2 1/2 year old that was just diagnosed with severe autism. where can i get PECS cards that are not going to banrupt me?

3:15
Hi Elizabeth! Have you tried our 100 Day Kit? It is a guide specifically created for families of children recently diagnosed with autism. You can read it here: www.autismspeaks.org/family-services/tool-kits/100-day-kit
3:16
I suggest you call our Autism Response Team at 888-AUTISM2. They can take your information and place your order. It is FREE!
3:17
I also suggest you search our Resource Library for tools like PECS cards. One of our categories is for visual tools that have been helpful to families in our community:http://www.autismspeaks.org/family-services/resource-library/visual-tools
3:18
Comment From Sarah

My “step son” (he is legally my son but not biologically) is Autistic. How likely is it my husband and I will have a child who is Autistic? I know that it affects about 1 in 110 children, 1 in 70 boys, but is it more likely since my husband already had one.

3:19
Hi Sarah! We have a few chat transcripts that you may find helpful. Here is the ‘Genetics of Autism: What It Means for You’ hosted by Geri Dawson, PhD, and Steve Scherer, PhDhttp://blog.autismspeaks.org/2011/10/27/transcript-dawson-schere/
3:20
Recently the High Risk Baby Siblings Research Consortium made the news with the findings that autism recurs in families much more frequently than had been realized. Here is more information! http://blog.autismspeaks.org/2011/08/30/the-babysibs-consortium-important-findings-ahead/
3:20
Comment From Maria

Do you know what therapies can help with behavior problems?

3:20
Hi Maria. We have a list of treatment options on our website in the What is Autism page. These are all treatments with documented science research behind them. In the left column of the page you will see a long list. You can click each of them to learn more about what that treatment involves.http://www.autismspeaks.org/what-autism/treatment. Our Resource Guide lists lots of therapists who specialize in these treatments www.autismspeaks.org/resource-guide. It is important to remember that because every individual with autism is different, not everyone responds well to the same treatments. Be sure to research before you decide what you feel is best for your child. There are lots of helpful tools out there!
3:20
Comment From Sarah

Elizabeth, with our son we found a lot of websites that had picture and stuff. We put them around the house and our son picked up on some of the things and now even says some of those words.

3:21
Thanks so much for adding your insights! We love seeing the community help each other out!
3:21
Comment From Rebecca

My son is 3 and is somewhat verbal. He will ask for things at home but at school he doesn’t ask for things unless he sees the object/thing he wants. It is because of this and his lack of spontaneous language(at school) that they are suggesting we use PECS. We had stated at his IEP that we didn’t want him using this. Our concern is that he would become dependent on this. What is your opinion of PECS? Is it beneficial?

3:22
Hi Rebecca! It is important that your IEP team listens to your needs and what you feel is best for your son. We have recently released an IEP Guide that will help you ensure your son’s needs are being met. You know what is best for him, so it is important that you make sure the school and the IEP team are hearing you loud and clear!
3:23
Here is a book about PECS that was submitted to our Resource Library by a family who found it helpful:http://woodbinehouse.com/main.asp_Q_product_id_E_978-1-60613-015-5_A_.asp
3:24
Comment From elizabeth

thanks! I did order the booklet yesterday. thanks for the links and also your input, Sarah

3:24
Comment From Sarah

Rebecca, I am not an expert by any means but I do have an autistic son as well. Stick with your gut feelings. Make sure the IEP is following what you want! The schools sometimes try to do what THEY want and what’s easiest for them and they can’t! If you end up wanting to use the PECS later, you can then add it to his IEP. You know your child best!

3:29
Comment From Rebecca

Our wishes and concerns have not been heard . At the first IEP the school district told us that all they wee willing to ouffer our son was a place in their Autism preschool program. Eventhough the “school” where he had been presented a report saying that their team thought that it would be in his best interest to continue with his home therapy program. Where can we find Educational Advocates in our area that would help us free of charge. We are in Modesto, California.

3:29
Hi Rebecca. It is important to make sure your concerns are being heard. You are entitled to have your voice heard in all matters related to the IEP. Our Resource Guide contains a list of advocates from across the country. You can search the resource guide at www.autismspeaks.org/resource-guide
3:30
We don’t list them by fee but hopefully they will be able to help you. In addition, you might also want tos earch our Local Autism Organizations category. Those organizations may be better able to point you in the right direction in terms of an educational advocate.
3:31
Comment From Sarah

google advocates in your area. I know here in GA there are not any in our city, but nearby towns.

3:31
Comment From Rebecca

Thank you Sarah

3:38
Comment From Guest

My son’s teacher communicates via email with us (parents). That’s fine, however, the emails are sent to the stepmother at her work’s email address rather than to my son’s father. I’m concerned for my son’s privacy. The school’s position is that they send emails to whatever address is provided. Are there any laws which can protect information regarding my son in this particular situation? SPAN was unable to find any

3:39
Hi Guest, have you tried changing the contact email that your school has listed?
3:40
That seems strange that the only one they send to is your son’s stepmother’s work email. You should make sure to have your email listed on there too, as all parents need to be involved in these decisions.
3:47
Comment From Guest

I don’t know how to explain to kids at the park that my son has autism and i live in NYC do you have any suggestions.

3:48
Hi Guest. Disclosing your child’s autism diagnosis to other people can be tough sometimes. We have a great list of stories on our website for peers that help them to understand more about their friends or playmates who have autism.http://www.autismspeaks.org/family-services/resource-library/books#peers
3:49
Perhaps you could show them these fun picture books, or get ideas from the books on how to best share the diagnosis. All of these books have been submitted by families who have found them to be extremely helpful with peers.
3:52
Comment From Sarah

I have also had troubles explaing to other children why my son isnt “normal”. They don’t understand why he doesn’t want to play with them or why he doesn’t talk back. I always say “God made Cody different (like he does everyone) and Cody just doesn’t always like to play or talk to others. It doesn’t mean he doesnt like or love you, it just means he likes to have his own space. He sometimes prefers to play alone instead….

3:53
Thank you Sarah for your helpful responses. We love seeing families in our community helping each other out. Sometimes listening to people who have had similar experiences as your own is extremely helpful and comforting.
3:54
Our Facebook page is a great way to get conversations started with other families in our community.www.facebook.com/autismspeaks
3:56
Comment From Sarah

You’re welcome. Hopeful I can help other parents. I have had wonderful friends with simiar experiences that have helped me!

3:57
Well we’d like to thank everyone for stopping by today! Remember we are here every Wednesday at 3pm EDT and you can reach us at 888-AUTISM 2 (288-4762) or email us atfamilyservices@autismspeaks.org.

Ask The Doctor- November 5th with Dr. Ricki Robinson on Autism America Radio

November 1, 2011 1 comment

On Saturday, November 5,  Autism America Radio with special guest Holly Robinson Peete and a full hour of  an ‘Ask The Doctor’ segment for the final hour of their broadcast with Dr. Ricki Robinson on this upcoming show.

Dr. Robinson will be answering questions live and on Twitter from 4-5pm PST.

People wishing to participate should call 877-520-1150 between 4-5 on Saturday or Tweet their questions to @AutismamericaR with the hash tag #askthedoctor.

Dr. Ricki Robinson is the author of Autism Solutions: How to Create a Healthy and Meaningful Life for Your Child

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