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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.

A Trip to the Dentist Can Be a Positive Experience

February 21, 2012 15 comments

Posted by Elizabeth Shick, DDS, MPH, assistant professor at Children’s Hospital Colorado and the University of Colorado School of Dental Medicine, one of 17 Autism Speaks Autism Treatment Network (ATN) sites across North America.

 As a dentist, I can only hope that when I say “open wide,” that’s exactly what the person sitting in my dental chair does. When I see children in my practice, I know I won’t get my wish every time. Many children with autism spectrum disorder (ASD) have difficulty following directions during routine dental cleanings. Nonetheless, I love working with these kids and their families. So I’ve adapted my practice so that everyone involved with these wonderful patients gets the most out of each visit.

A few years ago, for example, I had a visit I will never forget. The family had not one but two sons with autism. My receptionist greeted the family and after consulting with the parents, we decided it would be best for me to see the six year old first, and then see his eight-year-old brother. He came into my small examination room with his mom and immediately began pacing and staring at the floor as if looking for something he had lost. I asked him to sit in the chair. He didn’t respond or look up. It was clear that the bag of tricks I learned in dental school wasn’t going to get him to cooperate.

To coax him into my examination chair, I asked his mom to hold his hand and help steer him into the chair. She continued to hold his hand during the entire visit. I made sure not to rush through with my typical routine. Instead, I showed him the mirror and toothbrush I was going to use and explained to him, each step of the way, what I was going to do next.

After a while, he began to make eye contact with me. He even smiled. He didn’t do everything I asked, and he struggled through certain parts of the appointment, sometimes trying to sit up or jump off the chair. But we got done what we needed to—a dental cleaning, a thorough dental exam, and a fluoride application. Then his dad came in with his older brother, and we did it all again.

During dental school, few students practice treating patients with ASD. For this reason, many dentists may feel uncomfortable when caring for patients with autism, and it can be difficult for families to find a dentist who understands their child’s needs.

I have been fortunate to work with some wonderful autism specialists here at Children’s Hospital Colorado. With support from Autism Speaks’ Autism Treatment Network (ATN), we created Treating Children with Autism Spectrum Disorders: A Tool Kit for Dental Professionals. It is designed to help dental professionals like myself understand autism and work with parents to help make office visits successful. I often use the recommendations in the tool kit in my own practice.

With autism on the rise, it’s becoming more and more important that dental providers—including dental hygienists, dental assistants and even front desk staff—have the most current information about autism and know how to interact with families affected by it. It is our sincere wish that more dentists will be empowered by our tool kit to welcome these children into their practice and help make their visits a positive experience. We hope you will share the new Dentist Tool Kit with your dental care providers. You can download for free, here. Also see Autism Speaks Dental Tool Kit for families, here.

Build-A-Bear Workshop Accepting Nominations for Huggable Heroes

February 21, 2012 2 comments

Build-A-Bear Workshop, one of our wonderful corporate sponsors, is accepting nominations for its ninth annual Huggable Heroes program that recognizes young heroes in local communities.

Nominations will be accepted through Feb. 27 throughout the country. Build-A-Bear is looking for kids who provide extraordinary service to their communities.

Candidates must be between the ages of eight and 18. Ten kids will be selected as Huggable Heroes and earn a trip to Build-A-Bear Workshop World Bearquarters in St. Louis.

Each Huggable Heroe also receives a $7,500 scholarship and $2,500 to donate to a charity of their choice.

To nominate someone for the Huggable Heroes program, go to buildabear.com/huggableheroes or pick up an entry form at Build-A-Bear Workshop stores.

Got Sleep Questions? We’ve Got a Webchat for You

February 21, 2012 6 comments

Please join us TODAY for a live webchat with neurologist and autism sleep expert Dr. Beth Ann Malow, M.D., of Vanderbilt University Medical Center, at 1 pm Eastern (noon Central; 11 am Mountain; 10 am Pacific).

Dr. Malow will be fielding questions on sleep issues affecting individuals on the autism spectrum and their families. This webchat is being held in tandem with the same day release of Sleep Strategies for Children with Autism: A Parent’s Guide, the latest free tool kit published by the Autism Speaks Autism Treatment Network (ATN) as part of its participation in the Autism Intervention Research Network on Physical Health (AIR-P). The tool kit will become available for free download on the ATN’s “Tools You Can Use” page the same day.

Joining Dr. Malow will be ATN Program Director Nancy Jones, Ph.D., who will be fielding general questions about ATN services and other Autism Speaks resources.

We hope you’ll join us:

What: Live “Sleep Chat” with neurologist and autism sleep expert Dr. Beth Ann Malow
When: Feb. 21, at 1 pm Eastern; noon Central; 11 am Mountain; 10 am Pacific
Where: Join via the Live Chat tab on left side of the Autism Speaks Facebook page.

Autism Speaks to Young Professionals Winter Gala a Success

February 17, 2012 Leave a comment

Last night, more than 250 guests, including Miss New York 2012 Johanna Sambucini, packed the house at the ultra-cool Avenue lounge in New York City for the fifth Autism Speaks to Young Professionals winter gala. The annual event is designed to bring together young professionals from all industries to generate funds and awareness of autism. Co-chaired by Jesse Morris and Danny Ryan, the Autism Speaks to Young Professionals winter gala raised over $33,000 dollars for Autism Speaks’ research and advocacy initiatives.

A special thanks goes out to the sponsors who helped make the event such a special evening, including RBS, Brooklyn Brewery, Crop Organic Vodka, DonQ Rum, Farmers Botanical Organic Gin, Given Tequila Liqueur, Magner’s Irish Cider, and Tito’s Handmade Vodka. And finally, thank you to Lauren Colatrella of Bakari for the delicious and festive cupcakes!

Be sure to scroll through all of the great pictures below.

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Tune-in to NBC Nightly News Tonight!

February 17, 2012 Leave a comment

Tune-in to NBC Nightly News this evening, February 17, at 6:30 p.m., ET, for an interview with Geri Dawson, Autism Speaks Chief Science Officer. Dawson will discuss the Autism Speaks funded Infant Brain Imaging Study (IBIS) reported online today in the American Journal of Psychiatry. The new study suggests the changes in brain development that underlie autism may be detectable in children as young as 6 months of age, even before symptoms emerge.

For more details, here’s a link to a Science news item on the study.

Autism Speaks U “Light It Up Blue” LIVE Q&A Transcript

February 17, 2012 2 comments

On Thursday, February 16, our Autism Speaks U team hosted a LIVE Facebook Q&A for college students across the country. We discussed Light It Up Blue, World Autism Awareness Day, awareness/fundraising event ideas and shared links to awareness and promotions resources. If you were unable to join,  read below for the full transcript. Visit www.AutismSpeaks.org/U for more information.

4:59
Hi everyone, thanks for joining our LIVE Q&A! We’ll begin in 2 minutes.
5:02
This Q&A is intended for college students, faculty and staff.
5:02
It is text only – you’ll interact with us via the live chat client that you are logged into now. When you submit a question or comment there will be a delay from when it appears on the chat client.
5:03
Moderating this Q&A will be Sarah Caminker and Jaclyn Renner from Autism Speaks U.
5:03
Let’s do a roll call, so we know the schools that are being represented.Enter your school name and if you’re an undergrad, grad or staff.
5:03
Comment From Amanda

NYU

5:03
Comment From Theresa

SUNY Albany- undergrad

5:03
Comment From Rosalie

Seattle Pacific University, undergrad of psychology department

5:04
Comment From John

National Univ. San Diego

5:04
Comment From Elisse Bachman

Elisse Bachman, Graduate Student (’13): Bloomsburg Univ of PA (Bloomsburg, PA)

5:04
Comment From Guest

Liberty University – Undergrad

5:04
Comment From sharon moreno

VCU, Richmond, VA – parent of undergrad

5:04
Comment From Jessica

Appalachian State – undergraduate

5:04
Comment From Guest

University of Texas at Austin – undergrad

5:04
Comment From Guest

San Joaquin Delta College undergrade in early child development

5:05
Comment From Rob and LK @ Gettysburg

Co-founders and -presidents of Autism Speaks U Gettysburg College

5:05
Comment From Lori – staff

Bridgewater State University, MA

5:06
Comment From Aspen

Arizona State University Undergrad

5:06
Comment From Susan

Remington College of Nursing, faculty

5:06
Comment From Guest

Smith College, undergrad

5:06
Looks like we have a diverse group here! If anyone comes on later, please post your name and school.
5:07
Comment From Brookie

Meredith College Raleigh NC

5:07
Comment From Katrina Mesina

Chicago Autism Speaks Office

5:07
For those new to Autism Speaks U, it is a program that supports students who
-host awareness, advocacy and fundraising events
-start chapters
-become campus ambassadors.We have 50 official Autism Speaks U Chapters across the country and work with hundreds of students who host events!
5:07
Get more information at www.AutismSpeaks.org/U or email sarah.caminker@autismspeaks.org
5:07
This Q&A will include the following:
-Explanation of Light It Up Blue & World Autism Awareness Day.
-Overview of how to get your campus to participate.
-Event ideas and links to resources.
-Question and answer session.
5:08
Before we dive into our first topic, we’d like to ask….
5:08
Did you know that Monday, April 2 is Light It Up Blue and World Autism Awareness Day?
Yes: ( 73% )

No: ( 27% )

5:09
Thanks for the feedback.For those who answered no, Light It Up Blue is Autism Speaks 3rd annual awareness campaign, where iconic buildings, landmarks and schools across the world are asked to change their lights from white to blue on April 2nd in Honor of United Nations-sanctioned World Autism Awareness Day.
5:09
April 2nd also kicks off Autism Awareness Month which is all throughout April.
5:09
So what does this mean?April 2nd is a BIG deal, and we need your help to turn everything blue!
5:09
Last year, 150 colleges and universities across the country participated in Light It Up Blue by illuminating a building or structure or by hosting events on campus.
5:10
Did your school light it up blue last year?
Yes: ( 11% )

No: ( 89% )

5:10
Here are few images of buildings that went blue in 2011
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UConn’s Wilbur Cross Building.
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UC Berkeley’s Campanile
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Colgate University’s campus chapel.
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Case Western Reserve University’s Peter B. Lewis building.
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The Great Buddah at Hyogo in Kobe, Japan. – We know it’s not a school, but this is one of our favorite pictures!
5:12
Other incredible monuments that lit it up blue last year include the Empire State Building, Niagara Falls, Sydney Opera House, Christ the Redeemer Statue, Tokyo Tower and more!
5:12
A new question for everyone…..please vote!
5:12
Is your school planning to light up a building/monument blue this year?
Yes: ( 48% )

No: ( 52% )

5:13
If you answered no, here are 5 easy ways to get your school to participate in Light It Up Blue.
5:13
1. Decide what building you want to light up blue. Determine this BEFORE you ask your school to participate, so you’re prepared when meeting with faculty and staff.
5:13
2. Contact your school’s President and Student Activities Director to ask them to participate. Do this via email or by making an in-person appointment.
5:13
Download a sample letter template that you can modify and send to your school athttp://bit.ly/liubletter.
5:14
3. See if there’s an Autism Speaks U chapter (http://bit.ly/chapterlist) or one of our national philanthropic partners (Αlpha Xi Delta http://bit.ly/azdlistings & Theta Delta Chihttp://bit.ly/tdxcharges) at your school. If so, contact them and work together!
5:14
4. Ask different academic department heads (Psychology, Education, Communication, Speech & Hearing, etc.) to work with you and the school administration to light up your campus blue.
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5. Explain to your school WHY it is important to Light It Up Blue.
5:15
For example, 1 in 110 individuals are on the spectrum and a new case is diagnosed every 15 minutes. All the more reason to educate your campus about this prevalent disability.
5:16
Your campus will also be aligning themselves with prestigious schools, such as Cornell University, Johns Hopkins University, Northwestern, UC Berkeley and Penn State who lit up their campuses blue last year.
5:16
Now….HOW do you actually light up the building blue? There are 2 ways.
5:16
1. The school purchases blue bulbs from a hardware and lighting supply stores and replaces the white bulbs with blue ones.
5:17
Contact your school’s facilities manager for specific details on what type of lights you will need.
5:17
2. Place gels, filters or blue cellophane over the existing lights. These can be purchased from a local lighting supply store.
5:18
A few tips about the gels/filters…
5:18
If the installed lights are very bright white light, then it is recommended to use Roscolux #80 Primary Blue.If the lights have a medium intensity or the surface isn’t highly reflective, use Roscolux #68 Sky Blue.
5:18
The school’s facilities manager will be able to discuss this in more detail, but it’s helpful to have this information on hand.
5:18
If unable to light up a building blue there are other ways to have your school participate.
5:19
If there is an electronic marquee on your campus ask them to display the Light It Up Blue logo and announce that it is World Autism Awareness Day.
5:19

5:19
Encourage students, faculty and staff to all wear blue on April 2, or on another designated day in April. Gather everyone together, take a picture and send it to us!
5:19

5:20
Get a banner hung cross campus or near student housing to let everyone know that it’s World Autism Awareness Day.
5:20

5:20
Does your school have a well-known statue, monument or mascot? If so, decorate it with Autism Speaks U banners, gear and blue balloons!
5:20

5:20
Deck out the campus in blue. See how one school got approval to paint their campus’ tunnel.
5:21

5:21
There are SO many different ways to light up your campus blue! Be creative, think outside the box and don’t forget to send us pictures!
5:22
Now for a QUESTION….please submit a response
5:22
What building(s) or monuments are you planning to light up blue?
5:22
Comment From Caitlyn

The student center

5:22
Comment From Guest

Library, student center, and quad

5:23
Comment From Guest

Dorms

5:23
Comment From Lori – staff

I would love for the University to light up the main administrative building ~ Boyden Hall.

5:23
Comment From Rosalie

Demaray Hall Clocktower

5:23
Comment From Jessica

Mascot statue and our university’s main sign

5:23
Comment From Kimberly

Hey something I haven’t seen … let’s try and get towns or cities lite up blue that day

5:23
Comment From Rob and LK @ Gettysburg

Our main historic Building, Penn hall

5:24
Comment From Guest

I would like to light up College Hall here at Smith College, MA. It is very visible.

5:24
Comment From Theresa

I requested my school to light of the University Hall which is the first building you would see if you walked onto campus or the Campus Center

5:24
Comment From Kasia

We have a building that is a historic building here that just got new led lights so the building is always lit up and they can make them change different colors.

5:24
Comment From Susan

Will encourage everyone to wear blue April 2nd

5:24
Comment From Guest

Main building

5:24
Comment From Jasmine

The preschool I work for, the quad at the college and my house!

5:24
Comment From Kasia

Possibly our Mountaineer statue as well

5:24
Comment From Theresa

University Hall or the Campus Center

5:25
Comment From Guest

We are planning on having a block party on April 2nd. We’ll be having blue bracelets that light up, so we can do a countdown for sunset and have students light theirs up then.

5:25
Comment From Mike

We’re lighting up all the dinning halls on campus blue

5:26
Comment From Brooklyn at ISU
I love that block party idea
5:26
In addition to lighting up a building blue, host an event on April 2, or throughout the month of April!
5:26
To start, download our Light It Up Blue cards at http://bit.ly/liubcards.
5:26

5:27
Print these out and distribute the cards outside the buildings that are lit blue. They are a great way to raise awareness!FYI….we’ll be listing all available materials in a few minutes.
5:27
Event ideas can include, but are not limited to:
5:27
Bake sales
Autism Speaks wristband sale
Blue cupcake eating contest
Walk/run
5:27
Blue hair extensions booth
Spare change campaign
Zumbathon
T-shirt sales
Blue flower sale
5:28
One of our favorites….a blue cake pop fundraiser!
5:28

5:28
They’re easy to make and a big hit. Download the cake pop recipe at http://bit.ly/bluecakepops.
5:29
Or try a puzzle piece campaign.
5:29

5:29
Set up a table on campus and sell puzzle piece cards to students, faculty and staff. Whoever purchases the card, signs his/her name and display the cards in your Student Center.
5:30
Attach fact cards to blue flowers and sell them on campus throughout April. It’s a great way to raise awareness and brighten someone’s day.
5:30

5:31
For more event suggestions, download our “A through Z Event Ideas” guide athttp://bit.ly/q4Ex0w.
5:33
Another QUESTION for everyone….what awareness and fundraising events are you planning for Light It Up Blue & World Autism Awareness Day?
5:34
Don’t be shy….what events are you planning on April 2nd?
5:34
Comment From Rob and LK @ Gettysburg

trying to get the entire campus to wear blue, trying to light up a couple buildings, facts will be written throughout the ground in crayon, and we will be passin out info cards as well as wrapping trees up in blue tape

5:35
Comment From Mike

We’re having an all blue relay race on campus. $20 a team to register. The team with the most creative uniform wins a gift card which was donated.

5:35
Comment From Guest

We are getting shops around the university to post facts, make donations, and decorate their stores blue throughout the month of April.

5:35
Comment From Caitlyn

I was thinking a run/walk race and if that wasn’t possible an Autism Awareness BINGO night where the prizes would be blue

5:35
Comment From Jasmine

I plan on baking blue treats, cupcakes, cookies, cakepops and getting crafty by making blue flower headbands. Also, I plan on wearing blue as much as possible through out April! My 4 yr old son has autism and he makes my whole world a better place!

5:35
Comment From Lori – staff

My hope/plan is to get the involvement started at my campus! I love the ideas people are posting though!!

5:36
Comment From Susan

Blue Sidewalk chalk might be cool

5:36
Comment From Anna

We’re setting up a blue hair extension booth from April 2-6 on campus.

5:36
Comment From Lakesha

A scavenger hunt using puzzle pieces as clue cards, having students and faculty wear blue and having a walk.

5:36
Comment From Theresa

Aside from having a building lit up blue, we are trying to get everyone to wear blue and I was having trouble coming up with an idea but I really love the idea of the cake pop fundraiser attached to fact cards. And Sunday April 1st is our walk.

5:37
Comment From Caitlyn

Also I was thinking of painting a bunch of puzzles blue and hiding the pieces around our student center and the library and the person with the most pieces got a prize

5:37
Comment From Vicky Cid

we will be wrapping trees in blue ribbon, posting fact puzzle pieces into the ground with stakes, chalking facts onto the ground, lighting up a building blue, teaming up with our student body to hold awareness events like a blueberry pie eating contest, trivia bowl, etc… and teaming up with a local bar to raise funds

5:37
Comment From Rosalie

Will try to light up the buidling, blue ribbons around trees, mass emails to student to wear blue, and a fundraiser

5:38
Comment From Kasia

We are celebrating the entire week. We’re going to get a banner and have people sign but I’m liking the puzzle piece campaign better. Selling blue or puzzle piece printed ribbon. Selling wristbands. Giving out prizes to people we see wearing blue in support. Try to do a walk and have a game night. Having a guest speaker. On the 2nd we are also having a party (if the weather is nice) out by the building that we are lighting up blue.

5:38
Comment From Jasmine

My house will be decorated with Light It Up Blue and blue decor inside and out!

5:39
Comment From Michelle

We’re having a powder-puff football game with a few different sororities on campus. All the funds raised go to Autism Speaks! We’re getting the Greek Council & Student Government Assoc. to encourage everyone to attend.

5:39
All awesome ideas! There is one GREAT way to promote your events and that is through texting.
5:39
How many emails do you open? 1 out of every 10.How many text do you open? ALL
5:40
Send a text to 10 people. Include the event info. and ask them to forward the text on to 10 of their friends.
5:40
Create a text messaging campaign to increase attendance and funds raised!
5:41
Comment From Will

That’s a great idea! I never thought of that.

5:41
We’re excited for all you have planned.
5:41
Please remember to send pictures to autismspeaksu@autismspeaks.org of your events and campus lit up blue!FYI, since photos tend to be large, only send one photo per email.
5:42
Once your event is confirmed, we’ll send out awareness materials and a banner. Email autismspeaksu@autismspeaks.org your name, mailing address, event name/time/date/location.
5:42
A few additional tips….
5:42
1. Distribute awareness materials outside the building being lit up, so students connect the color blue to autism and Autism Speaks U.
5:42
2. Remember to take pictures! Contact your school’s newspaper or photography club and ask them take a high resolution picture of the building being lit blue and of your events.
We promote all of the schools that we receive pictures from.
5:43
3. Don’t start from scratch…use our promotional materials to get the word out!
5:43
Click the links below to download the items and print them off.
5:44
Side note: We’ll be posting the transcript from this Q&A later on the Autism Speaks U Facebook (www.facebook.com/autismspeaksu), so you’ll be able to access the links again.
5:44
Customizable Light It Up Blue Posters
• 8.5 x 11 poster- http://bit.ly/liubposter1
• 11 x 17 poster- http://bit.ly/liubposter2
5:44
•How To: Light It Up Blue Flyer- http://bit.ly/liubflyer
• This offers ideas for how you can get your campus involved.
5:44
Light It Up Blue Fact Cards – http://bit.ly/liubcards
5:45
These cards were just made for Autism Speaks U & Light It Up Blue, so use them!
5:45
Autism Speaks U Quarter Cards – http://bit.ly/quartercards
5:45
Fact & School Cards – http://bit.ly/vefknD
5:45
Autism Speaks U Handout – http://bit.ly/xfp6fq
5:46
Remember to email autismspeaksu@autismspeaks.org when your school CONFIRMS what building will be lit up and/or you have a confirmed event planned for Light It Up Blue.
5:47
We promote all the schools that participate in Light It Up Blue and want to include your campus!
5:47
We have a few minutes left, and wanted to take one more poll, before we open it up to questions.
5:47
Do you prefer attending a monthly Facebook Q&A or would you rather have a monthly conference call?
Conference call: ( 11% )

Facebook Q&A: ( 89% )

5:49
Good to know that we all love Facebook!
5:49
Now, please ask any questions about what was discussed or about the Autism Speaks U program.
5:50
We’ll share these questions, so everyone can learn from each other. If you have tips/suggestions please provide those as well.
5:50
Comment From Kim

If I’m having trouble getting my school to Light It Up Blue, who should I contact?

5:50
Kim, please contact your school’s president and/or student activities director. Download a sample letter template that you can modify and send to your school at http://bit.ly/liubletter.
5:51
Comment From Mojdeh

How long does it take to start an Autism Speaks U chapter?

5:51
Mojdeh, it can take some students 1-2 months, while 6 months+ for others. It depends on your school’s process, and if you finish all the required Autism Speaks U paperwork.
5:51
Comment From Isabel

If we’re having an event can we use the Autism Speaks U logo on our flyer?

5:52
We have a specific Autism Speaks U logo that is used for people hosting events. Please email jaclyn.renner@autismspeaks.org, explain your event and we’ll provide the correct logo.
5:53
We do ask that you submit a proof to us of ALL items using the Autism Speaks U logo before it gets printed/distributed.
5:53
Comment From John

To Kim, I have found that getting the Local TV station involved can sometimes push things in the right direction.. Be Nice…

5:53
Comment From Lakesha

I am having trouble getting my school to light it up. The presidents secretary is not letting us get through, and other faculty are not showing up to meetings we have scheduled to talk about plans

5:54
We have had students email the school President directly and explain WHY it is important to light it up blue. Explain to them what this day/campaign means. You can also CC other school administration on the email, so they are appear about it as well.
5:54
Comment From Jasmine

If I host an Autism Awareness/Light It Up Blue party at my house, will you still be willing to send banners and additional materials?

5:55
Absolutely! Email us the details.
5:55
Comment From Kasia

As far as selling t-shirts are we allowed to sell the shirts from the website or does it have to be designed that we created to sell?

5:56
You can sell shirts from the website or from other places that you purchased them. Completely up to you!
5:56
Comment From Kim

John- That’s a great idea. I was thinking of contact our school and local news paper and TV station to see if they would publicize what we’re trying to do.

5:56
Comment From Mojdeh

How to you go about getting sponsors for events? My school has said that once my chapter is approved I am given $200 for the year.

5:58
Contact local businesses, restaurants, shops, etc. Stop by stores close to campus and explain to them what a sponsor for your event/chapter would entail.
5:58
Access our sponsorship guide at http://bit.ly/o2REod.
5:58
It’s a great resource!
5:59
We’re just about out of time. Thank all of you for participating in our Q&A!
5:59
It’s fantastic to see college students so involved in raising awareness and advocating for the autism community.
5:59
Remember to check out www.AutismSpeaks.org/U for more information!
5:59
If we didn’t get to your question or you have a few more, email us at autismspeaksu@autismspeaks.org.
6:00
Thanks, and have a great night!

Weekly Whirl – Autism Swag!

February 17, 2012 3 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.

This week we wanted to focus on autism swag! We all know that awareness is key and these awesome people show us how they do it! 

Tracy R

Ruth Ann Luna

Nicole Persaud Settles

Julie McDonald Gilmore

Jenny March

My son has sleep problems. What can help?

February 17, 2012 55 comments

 Today’s “Got Questions?” response comes from two clinicians in Autism Speaks’ Autism Treatment Network (ATN). Neurologist and sleep specialist Sangeeta Chakravorty, M.D., is director of the pediatric sleep program at the Children’s Hospital of Pittsburgh; and psychologist and sleep educator Terry Katz, Ph.D., of the University of Colorado School of Medicine and co-founder of the Sleep Center at Children’s Hospital Colorado.

First, know that you are not alone! Many children with autism spectrum disorder (ASD) have difficulty falling asleep and staying asleep through the night. So Autism Speaks’ Autism Treatment Network (ATN) clinicians have been studying how to help them sleep better. One result of this research is the Sleep Strategies for Children with Autism: A Parent’s Guide, made possible by the ATN’s participation in the Autism Intervention Research Network on Physical Health (AIR-P). Starting next week (Feb. 21), this tool kit will become available for free download from the ATN’s Tools You Can Use webpage.

Here are some of the tips that we and our patients’ parents have found most helpful:

1. First, ask your child’s doctor to screen for any medical issues that may be interfering with sleep.

2. Prepare your child’s bedroom for sleep: Is the temperature comfortable? Does your child like the sheets, blankets and pajamas? A dark bedroom promotes sleep, but your child may need a night light for comfort. If unavoidable noises present a problem, ear plugs or a white noise machine may help. Keep the bed just for sleeping, not for playtime or time outs. And try to keep the environment consistent: e.g. If you use a night light, leave it on all night.

3. Maintain good daytime sleep habits: Have your child wake up around the same time each morning. Try eliminating daytime naps. Help your child get plenty of exercise and sunlight, but avoid vigorous physical activity within three hours of bedtime. Likewise avoid caffeinated food or drink (chocolate, cola, etc.) in the evening.

4. Prepare for bed: Keep bed time consistent, choosing a time when your child will be tired but not overtired. Develop a calm and consistent bedtime routine. Keep the lights low.

5. Consider using a visual schedule to help your child learn and track the bedtime routine.

6. Teach your child to fall asleep without any help from you. If your child is used to sleeping next to you, substitute pillows or blankets. If you can, leave the room. If this is too difficult, stay in the room without touching—for instance in a chair facing away from your child. Over a week or so, slowly move your chair toward the open door—until you’re sitting outside.

7. Teach your child to stay in bed. Set limits about how many times your child is allowed to get out of bed. Use visual reminders such as one or two bathroom and drink cards per night. Put a sign on the inside of the bedroom door to remind your child to go back to bed. If your child does get out of bed, stay calm and put him or her back to bed with as little talking as possible.

8. Reward your child for sleeping through the night, and remind your child of your expectations. Consider drawing a contract of expectations and rewards. Small rewards are best.

Helping Teens Sleep
Like young children, teens need adequate exercise and sunlight and consistent waking and bed times. However, adolescence brings hormonal changes that can delay the onset of sleepiness until late at night. Unfortunately, many middle and high schools start early! Find out if a later class schedule is an option. In any case, work with your teen to set a good bedtime. And teens who drive need to know NEVER to drive when sleepy.

Helpful steps include having your teen finish homework and turn off computer and TV at least 30 minutes before bed. Keep lights low. A light snack before bed can help growing teens sleep through the night. Finally, it’s probably a good idea to remove electronic devices, including TVs, from the bedroom.

Have more sleep questions? Join us for a live webchat with neurologist and autism sleep expert Dr. Beth Ann Malow, M.D., of Vanderbilt University Medical Center, on Feb. 21, from 1 to 2 pm Eastern. Join via the Live Chat tab on left side of our Facebook page

Got more questions? Please send us an email at GotQuestions@autismspeaks.org.

In Their Own Words – Our Path to Diagnosis

February 16, 2012 32 comments

This post is by Jennifer, a stay at home mom with two children.  In 2009 her family started walking for Autism Speaks and since then, we have raised over $38k and are gearing up for another year.  Our walk team is called Grape Jelly on Pizza because my son has a very strange appetite! You can check our her blog Grape Jelly on Pizza which was created  to help others navigate through all the difficult questions and behaviors associated with autism and to also remind parents that they are not alone.  Support – Compassion – Awareness.

It was not a simple path to his diagnosis.  Realizing there was a problem was tough.  Knowing where to start was hard and dealing with the fact that your child will have autism his entire life was horrible. I haven’t heard one story that was cut and dry yet about getting a diagnosis.  Here is our story.
My son was born at 13:13 on January 7th.  (13 happens to be a lucky number for me.)  It seemed like everyone was there to welcome in the first born grandson from both sides.  It was a happy occasion.  We had many visitors for months to come.  He was a squirmy little guy with a big smile.  He didn’t like to stay still, ever. He was hitting all of his milestones and his gross motor skills were off the charts.  He was climbing stairs before he could walk.  Everything seemed normal.

We didn’t want to wait, so we had another baby.  My daughter and son are 17 months apart.  Oh, how our lives changed when there were two.  Lack of sleep because my son still wasn’t a good sleeper and now a newborn.  They would both be up every three hours and not at the same time.  There were days that were just a blur.

A friend of mine had a son who was five months younger than B.  She would bring T over to play often.  That’s when I started to notice differences between the boys.  T would talk to her, point at things, make eye contact, play appropriately with toys; the list went on and on.  Now, I’m not big on comparing but it couldn’t be helped.  Why was B so much different than T?  At night I would tell my husband about all the differences and would end up crying at the dinner table.  After a while he didn’t want my friend to come over anymore because of how upset I would get.

Confirmation bias is a tendency for people to favor information that confirms their preconceptions or hypotheses regardless of whether the information is true. 

When we were alone he was fine.  We were fine.  It didn’t matter that he couldn’t talk.  Kids throw fits.  We could justify anything.  We were good at explaining what was happening or not happening away.  Confirmation bias.

Finally we heard the word autism.  Two family members stepped forward at two different times to express their concerns.  Unfortunately, they left it up to me to relay the information to my husband.  It is sorta like when people keep asking the girl, “When are you going to get engaged?”……go to the guy to find out.  It puts her in a bad spot.
At my son’s wellness visit at 2+ we asked if he could have autism. While I was holding my son on my lap, the pediatrician said his name.  My son looked up at the doctor and the doctor told us, “No.  He doesn’t have autism.  If he did, he wouldn’t have looked at me.”  OK.  Again, confirmation bias.  A doctor confirmed it, he didn’t have it.  Sounded good.  Everyone else is crazy.  Instead he wrote a prescription out for a speech therapist.  This we would do.

After the intake and he started therapy, his speech therapist suggested he had developmental delay.  OK.  No ‘autism’ word.  We kept with the speech therapy.  In the meantime I had contacted the county to get started on getting him evaluated for speech delay and developmental delay.  Not autism.  The papers were received in the mail, completed and re mailed that same day.  I knew he needed help.  I waited and finally got the appointment call.

So we went and of course he qualified for services.  The report brought me to tears.  I HATE reading those reports.  Still do.  Then I get a call from someone saying she was his teacher.  I was like, what?  Turns out he qualified for 1/2 days, 4x a week and he could ride the bus.  He started when he was just 3.  I had never been away from him with the exception of having my daughter.  It was tough.  Then a few months went by and I received a flier in his backpack advertising an Autism Awareness day at Sesame Place.  Autism?  He doesn’t have autism.  Speech and developmental delay yes but not autism.  I called the teacher to see if it was a mistake and she said, oh, I must have put it in his backpack by accident.  See, every professional we had dealt with up to this point had never used the autism word.  Since then we found out why.  If a professional says ‘autism’ to you and you don’t have insurance, then they are responsible to pay for your services.  Didn’t know that did you?

I also started going to a parent support group through the IU and after the second time a mom told me the truth……speech delay & developmental delay = autism.  We now had to find a developmental pediatrician to get an official diagnosis then start with medical assistance.  My head was spinning and I went into depression.  I swear I lost days, weeks and months.  Feeling completely numb and truly alone in my quest to get help.  I tried my best not to show the stress.  Like I was in control but I was falling apart.

Eventually, we went in to see the developmental pediatrician.  We walked out with an official diagnosis of autism.  For the first time I had a smile on my face.  I knew what it was, it had a name and I was going to do everything in my power to help my son.  Nothing was going to stop me and nothing has.  We are a strong family unit out to do whatever it takes to not only help our son but to help others.  We are not alone.  You are not alone.  We are all here for each other.  We need to continue to reach out to others.

“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.

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