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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

2011 Facebook Halloween Photo Contest

October 31, 2011 Leave a comment

Our 2nd Annual Facebook Halloween Photo Contest was another GREAT success! We received countless submissions and it was so hard to choose a ‘Top 7!’ This year, we were lucky to have our friends at Webkinz provide gift baskets for the winners!

Here are our winners!

This slideshow requires JavaScript.

HAPPY HALLOWEEN!

James Durbin To Do List!

October 28, 2011 12 comments

This post is adapted from ‘JAMESDURBININFO.’

To Do List

In the spirit of supporting all things James, here is what you need to do today to support our favorite rocker.

    1. Check out the new website at www.DurbinRock.com. You could get lost for hours there – it’s awesome. Think about your Christmas list and check out the merchandise section.
    2. Sign up for the Community on the website and flood James with congratulations.
    3. It is Follow Friday on twitter. Put #FF in front of James’ twitter name and tweet it. #FF @DurbinRock. While you are at it, add some of your other favorite celebrities and James fans.  
    4. Be sure you like James on Facebook if you haven’t done it yet already.
    5. Want mobile updates? Subscribe by sending text “james” to 30644 

Within a few weeks it will be time for voting for James video on VH1. This is going to be important for getting James’ video into the top 10. VH1 is watched…..so keep your voting fingers limber!

   

Transcript of ‘Genetics of Autism: What It Means for You’ Webchat with Geri Dawson, PhD and Steve Scherer, PhD

October 27, 2011 4 comments

On Thursday, October 27 our first “Office Hours” webchat was held with Autism Speaks Chief Science Officer Geri Dawson, PhD, and her guest host: University of Toronto’s Steve Scherer, PhD, a world pioneer in the discovery and understanding of the genes and genetic changes that predispose to autism. Drs. Dawson and Scherer welcomed questions about the emerging understanding of genetic predisposition to autism, related studies supported by Autism Speaks and how this research can lead to new therapies and insights of direct benefit to families and individuals affected by autism.

12:29
Hi, everyone! Thanks so much for joining us for this, our first live “Office Hours” with Autism Speaks Chief Science Officer Geri Dawson, PhD, a licensed clinical psychologist and a professor of psychiatry at the University of North Carolina, Chapel Hill. Dr. Dawson’s guest host today is University of Toronto’s Steve Scherer, PhD, a world pioneer in the discovery and understanding of the genes and genetic changes that predispose to autism. Drs. Dawson and Scherer welcome your questions about the emerging understanding of genetic predisposition to autism, related studies supported by Autism Speaks and how this research can lead to new therapies and insights of direct benefit to families and individuals affected by autism. They’ll be posting answers to as many of your questions as they can and regret that their fingers can’t fly fast enough to answer them all. 
12:32
Comment From cindy

what actually keeps my autistic son from speaking?

12:32
Hello Cindy. This is Dr. Dawson. There are many reasons why kids with autism have trouble developing language. Sometimes it just take time participating in treatment. Some children don’t speak until they are in elementary school. Others learn more quickly. It is important that you have your child evaluated by a speech-language pathologist who can help you understand why young child hasn’t learned to speak yet. There are many good devices, such as iPrompt that can help children who are not speaking communicate their needs and wishes.
12:34
Comment From Robin

Hi . My question is about autism and other genetic ic disorders. Is there a connection genetically between autism and say huntington’s disease?

12:35
Hello this is Dr. Steve Scherer. Thank you for your question. I have not heard of any definitive link between autism and Huntington disease. It is possible that these two conditions will occur in the same families just by chance. This may also be the case with autism and other disorders.
12:36
Comment From Mark S.

I have a friend with a three year-old boy who was recently diagnosed with Autism. Not sure of the specifics (speech, social interactions). Are there any helpful books or resources you would recommend to parents who barely know the first thing about Autism????

12:36
Hi Mark, This is Dr. Dawson. There are many resources on the Autism Speaks website, including information about what is autism, treatments available, and local resources. Your friend is fortunate to have someone who cares about helping. I am sure you will be a great source of emotional support for your friend. Here is the link: http://www.autismspeaks.org/family-services
12:37
Advance question from Theresa
Hello: My question is will my Nuro typical son carry a gene that can lead to his children having autism?
12:38
Hi, Theresa. Dr. Scherer, here. Yes this is possible, but unless there is a significant family history of autism the likelihood of this occurring would be near to population average.
12:40
Comment From Gwendolyn

Hi, in working with young autistic children (ages 18 months to 8 years), I have noticed frequently that many of the non-verbal kids have two very interesting things in common. First, while they will not speak, they have no problem singing to themselves and can remember every lyric to their favorite songs. Second, I have been amazed by the ability of the older kids (5-8) to spell and write things with a wonderful grasp of grammar, even though they do not speak. How might these things be explained?

12:40
Comment From nettie

is there a test that can be done to fine out if it is genetic or not?

12:40
Hello Gwendolyn, This is Dr. Dawson. People with autism can be gifted in many areas, including musical ability, and sometimes it is easier for a child to learn to sing before he learns to speak. In fact, singing is often used during therapy to promote speech and social interaction. Similarly, writing can sometimes be easier than speaking. This is because some kids with autism are able to process information in the visual modality easier than the auditory modality. One way or another, the important thing is to give kids a way of expressing themselves and relating to others.
12:41
Dr. Scherer here. There is a new technology called chromosome microarray analysis that allows detection of some genetic changes involved in autism. Recent research has shown that this technology can find genetic alterations in perhaps some 10% or so of individuals with autism. There are also some other single gene tests available. In a moment we will post a link that directs you to an article that can tell you more about the tests (it will be called GeneTests).
12:41
A highly referenced resource (GeneTests) for clinical geneticists/genetic counsellors:http://www.ncbi.nlm.nih.gov/books/NBK1442/
12:42
Advance question from KARA: How do we prevent this for the next generation? protect our grand children? I have 2 with Autism one High Funtioning and in College one that should be in 6th grade and is nonverbal and not potty trained-they are number2 and 4 of 4 boys, 1 & 3 are Nuero-typical! Please help us know how they can have a family with out anymore Autisms!
12:43
Hi Kara. Dr. Scherer, here. Your family would likely benefit from discussing the latest genetic results with a local clinical genetics/counselling group. You could also enroll in research programs. New chromosome analysis methods are allowing detection of copy number variants (CNVs) that will inform on these questions in some 10% of families with autism. Even newer DNA sequencing methods may further resolve things but these are very early days and the data is just now being looked at. … More from Dr. Dawson … 
12:43
from Dr. Dawson … 
Kara, our hope is that every child, whether that child has autism or not, is given the best chance for a meaningful productive and enjoyable life. The good news is that methods are being developed that can identify a child at risk for autism during infancy. Intervention can begin right away and lead to more positive outcomes. 
12:44
Comment From selma

ıs ıt hard to learn two language for them

12:44
Hi Selma, This is Dr. Dawson. There was a recent study published that showed that kids with autism who are exposed to two languages do not show slower development of language, as compared to those exposed to only one language. If a child is living in a bilingual home, they should be exposed to both so they can learn to communicate with their family members who speak different languages.
12:45
Comment From marie demachy fauth

I ordered a microarray analysis for my son who has autism, the microarray came back negative. At the same time I ordered genetic testings on several autism suspect genes, Shank3 gene and CNTNAP2 came back positive for genetic mutations. I wonder why the microarray analysis did not picked up these 2 genetic mutations?

12:46
Dr. Scherer’s response. Microarrays are a new technology that allows scanning of all of the DNA and genes in the genome. It will detect genetic alterations widely, but only if they are of a certain size (typically >500,000 chemical bases of DNA). DNA sequencing is a separate technology that typically looks at one gene at a time (eg. the SHANK3 or CNTNAP2 gene), but at a much higher resolution (1-1,000 chemical bases of DNA at a time). So in a way the techniques are complementary. Therefore, it would be expected that one technique would detect some changes while the other would find others.
12:47
Comment From Barb B.

Can you talk about research being done in the areas of immune disfunction and environmental causes which may lead to Autism. If a person is genetically predisposed can we avoid the things which may lead to Autism developing through early dietary and biomedical intervention? I feel very strongly that this is a path which needs so much more research

12:48
Hi Barb, This is Dr. Dawson. There is a great interest in understanding the role of the immune system and environmental factors in autism. Autism Speaks is funding a great deal of research in this area. To find out more, visit the science section of the Autism Speaks website and search under grants (link to come). We believe that autism is caused by a combination of genetic vulnerability and environmental risk factors, which can include prenatal factors (e.g. maternal infection) and postnatal factors (e.g. toxins, such as pesticides). We are very committed to funding research on these topics and hope to have more answers.
12:49
Here’s a link to our grant search:http://www.autismspeaks.org/science/grant-search/results
12:49
Comment From Christina

I’m pleased to “see” Dr. Scherer here! Wanted to let him know that my two sons, my husband, and I just gave blood samples last week, at Sick Kids, to participate in the Genetics for Autism study, with Dr. Roberts.

12:50
Very nice to hear from you. Families like yours and many others participation in research helps everyone. Ultimately, we need to work very closely with families like yours to decode the mystery of autism so hopefully we can provide answers to your questions. Dr. Roberts and my team will work hard studying your DNA! You will also get an invitation each year to our family research day where you will learn about the status of the research. Dr. Scherer.
12:52
Advance question from Felicia:
I have four children, two boys and two girls. My 9yr. old has asperger’s, my five year old is fine, my 4 yr. son is autistic functiong at an 18 mo. level and my 2 yr. old son is autistic functioning at 10 mo. level. Is it genetics that gave me so may autistic children and if so why did it skip one? My husband wants to try for a typicaly developing boy after the boys are older. I feel we should not if 75% of our kids are autistic. What are the odds we could have a non autistic child?
12:53
Hi Felicia. Dr. Scherer, here. Genes (genetics) seem to often be involved in autism but there effect is almost always not absolute. There are about a half-dozen genes known that if present in one copy instead of the typical two copies may lead to a form of autism. Sometimes it is a more debilitating form of autism and other times it is a more high-functioning form. The new genetic tests may have the most significant impact by facilitating (or highlighting) early detection, perhaps even before onset of symptoms. It is hoped that this early identification may assist in intervention. I think the question above may also be getting at the issue of why more boys have autism than girls. For some genes on the X-chromosome there is a relatively simple explanation, but for other genes the genetics are even more complex.
12:54
Comment From Christina

Could you discuss the frequent co-morbidity of autism and ADHD? Are some medications better than others to treat ADHD symptoms in a child with autism? Thanks.

12:54
Hi Christina, This is Dr. Dawson. Autism is associated with several medical conditions (“co-morbidities”) and ADHD is one of the most common co-morbidities. The treatment for ADHD for a child with autism can include medications as well as behavioral interventions that can help a child focus their attention. I suggest that you contact a physician with expertise in autism in your local community and ask the physician for help in making a decision about medication. Autism Speaks Autism Treatment Network recently published a tool kit that helps parents make a decision regarding whether they should try a medication to help with behaviors, such as ADHD. We will send a link in a minute to the toolkit.
12:55
Comment From Guest

My son has asperger’s, daughter has tourette’s and male family on DH’s side (including DH have motor tics and asperger tendencies). Is it a valid reason then for us to pursue donor sperm for any future children? Will there soon be a way to determine the genetic risks and probabilities? I don’t want to knowingly give any more of our kids neuro disease.

12:56
Hi, Dr. Scherer here: Different neuropsychiatric conditions are sometimes observed within families, as seems to be the case in your situation. If you haven’t already done so, you should discuss your situation with a clinical geneticist or genetic counsellor. There are now some genes identified for autism and other neurological conditions, but ultimately family history is very important and you should discuss this with your doctor and the genetic specialists. I would also refer you to the GeneTests document we posted earlier.
12:57
Comment From Dawn Ford

I have a question about diagnostic testing and autism. When my son was 2 years old he had a brain MRI and a microarray genetics test, both of which were normal. He is now 5 and since that time I have read several articles about abnormal brain MRIs and genetics tests in children with autism. I’m curious if it is considered normal for a child who clearly has autism (he also has a diagnosis of hyperlexia) to appear completely normal on these types of diagnostic tests.

12:58
Hi Dawn, This is Dr. Dawson. It is common to find that a child with autism shows no abnormalities in brain MRI and microarray genetics tests. These tests are not necessarily sensitive enough to detect the subtle genetic and brain changes that may be associated with autism. Your child’s skills in the area of reading may help him excel and communicate. I hope he is able to use these skills at school.
12:59
Comment From Guest

We have a 6yo daughter with pdd-nos and a 4yo “neurotypical” son. In contemplating the possibility of a third child, is there currently any testing we can have done to indicate whether we have a heightened chance of having another child affected by autism?

1:00
Hi 12:35 Guest. In the last few years there have been many advances in genetic analyses. Earlier, I mentioned the new chromosome microarray analysis (CMA) test. This is becoming a standard of care test in many countries and for a proportion of families with autism it can inform on relative risk. There is much information on the internet. You should do some research and talk to your doctors to see if they think it is appropriate. Much more genetic counseling information (including risk assessment) is given in the GeneTests document we linked to (it will be easier for you to read this than me trying to type out such a long answer!). Dr. Scherer.
1:03
Advance question from Lynelle: How will the new DSM V affect those of us whose kids are now diagnosed with Aspergers Syndrome and/or High Functioning Autism? Will our kids still be able to get the same service and therapies they now receive?
1:04
Hi Lynelle. Dr. Dawson here. The DSM V likely will combine autism, PDDNOS, and Asperger into one category called Autism Spectrum Disorders. We expect that this will actually help kids qualify for services because sometimes kids are denied unless they are diagnosed with autism. Your kids should be able to qualify for the same services they are receiving now.
1:05
Comment From Teresa

Sorry this question is not about genetic links, etc. If you want to disregard, it’s fine. Do you know anything about side effects of Risperdal to control behavior? My daughter has high-functioning autism and has been on R since last February. We are really concerned about this medication but nothing else was suggested except for Topomax which she also takes during the day to calm her down. Thanks!

1:05
Hi Thersa, This is Dr. Dawson. Risperdal is one of only a couple of medications that has been FDA approved for the treatment of “irritability” in individuals with autism. Irritability includes aggression, tantrums, and self-injury. Unfortunately, a side effect of Risperdal is weight gain, so a parent has to weigh the pros and cons. We posted earlier a link to a Tool Kit that helps parents make decisions about medications for their child. A recent study showed that medications such as Risperdal are more effective when combined with behavioral intervention. We are currently working toward developing drugs for autism that have fewer side effects.
1:06
Comment From Brie

When is genetic testing appropriate for a child suspected of autism or related developmental delays?

1:07
Dr. Scherer’s response. A major impact of the genetic testing will be if it can help to identify individuals with autism at the earliest possible time. This will then facilitate attempts for intervention treatments, which have maximal impact when started early. So, if there is a family history of autism the genetic tests (eg. chromosome microarray analysis) might be used early. Right now, most of the microarray analysis is occurring after their is some clinical indication of autism of developmental delay (or later). So it is being used mainly as a confirmatory test. As the information becomes better understood the tests will likely have an increasing impact. The American College of Medical Genetics, the Canadian College of Medical Genetics, and others have recently published medical papers describing when this type of testing is appropriate. You can find these documents in Pubmed. If you need help finding them I think we can direct you to the source.
1:09
Here’s the report. Downloadable freehttp://www.springerlink.com/content/b286184612181424/
1:10
Comment From Rebecca

Is there a link between vaccinations & autism?

1:10
Hi Rebecca, There have been many epidemiological studies that have examined the link between the MMR vaccine and a preservative used in vaccines (thimerosal) and autism, and no link has been found. Thus, we strongly encourage parents to vaccinate their children because we know that this can help ensure that the child doesn’t get serious infectious diseases. We are still exploring whether there may be rare instances in which a child with a specific medical or genetic background may have an adverse response to a vaccination that triggers the onset of autism symptoms.
1:12
Comment From Nancy

How can1 of my kids have austism but my other 2 are fine?

1:14
Hi 12:43 Nancy. Autism sometimes appears as ‘sporadic’ and in other instances as ‘familial’. We know the most about genes being involved, but environmental triggers could also be culprit. The other thing to consider is that autism favors males over females (~4:1). If I was a betting person I would guess your your child with autism is a boy. We’re just now learning the rules and the one common theme that emerges is complexity. Some of the newer genetic tests might help inform on autism appearing in other family members, but these are still rather rudimentary. We will post a link to a scientific paper Dr. Dawson and I co-authored that explains this more.
1:16
Hi Marie, This is Dr. Dawson. You are right that drugs are being developed that help restore the functioning of the synapse (connections bewteen neurons in the brain) in disorders such as Fragile X, in which autism is common. This is a very exciting and promising area of research and Autism Speaks is investing in studies in this area. It is possible that the same drugs that we hope will be helpful in Fragile X and other syndromic forms of autism will also be helpful for people with autism without syndromes. These studies and clinical trials are on-going. Be sure to subscribe to e-Speaks because we will keep you up to date on these studies that seek to develop medicines that can reduce core symptoms of autism.
1:17
You can subscribe to eSpeaks here! http://ow.ly/7b1dE
1:18
Advance question from Sheetal: Hi. What do you know about the genetics and chances involved regarding a neurotypical sibling of an autistic having a child with autism. Thanks Sheetal
1:19
Hi Sheetal. Dr. Scherer, here. Genetic counsellors have statistics they use for just such a question. Given the rapid advances in genetic research in autism there are now some known autism risk genes and in a proportion of families (~10%) there may be genetic information available that will help inform on this question.
1:19
Comment From Teresa
Hi :) Thanks for being here for us! My question: with so many children currently being diagnosed with autism – 1 in 110 – is it not equally important to research autism causes not only because of genetics but also caused by environmental issues?
1:20
Hi Teresa. I believe it is equally important to perform autism research into genetic and environmental causes of autism. To be honest, however, the genetic research (right now) is easier to do because we have the right technologies and there are endpoints in our experiments. We know precisely how much DNA and genes there are so we think genetic studies will be tractable. The environment on the other hand is much more complex. I think the majority of research will continue on the genetics side for the next five years, but then once we have done this work we will have a more solid basis to frame ‘environmental’ research questions on. This is my personal opinion, Dr. Scherer.
1:21
Comment From Donna

Is there any way to control my sons violent outbursts? He is constantly grabbing at peoples throats.

1:22
Hi Donna, This is Dr. Dawson. Many children with autism have challenging behaviors, such as violent outbursts. It is important to find out why the outbursts are occurring. Is your son frustrated, confused, bored, or trying to escape an unpleasant situation? A psychologist trained in “functional behavioral assessment” can help you determine the reason for the outbursts and then develop a behavioral problem to reduce these outbursts. These behavioral interventions are very effective. Sometimes medication can also be helpful. Another thing to consider is whether your son many have an underlying medical condition, such as GI distress or even a sleep problem, that is contributing to his outbursts. To find a psychologist in your area, visit our Resource Guide on the Autism Speaks website. We will send the link.
1:22
Here is a link to our Resource Guide:http://www.autismspeaks.org/resource-guide
1:24
Advance question from Tracy: Are there any studies going on right now? My oldest daughter was going to participate in a study, but did not qualify. However my younger daughter has been diagnosed twice for autism, non-verbal. Considered moderate to severe due to the lack of communication. now I cannot find any studies. I need to get her into a Developmental Pediatrician, but once I get the paper work in, it’s at least another 6-8 month wait to get in.
She does get help at her pre-school, and occasionally qualifies for SSI, but we do not make enough money to afford private at home therapy. Is there any help out there for her? She is an adorable, affectionate little girl. She makes great eye contact ever since her eye surgery for severe eye crossing. Since then it seems an entirely new world has opened up for her.
Communication is still slow going. Potty training is in progress, but slowly.
I guess I am just another parent in need of re-assurance and understanding that has lots of questions, and just wishes to find someone that might have some answers.
1:25
Dr. Dawson here. Dear Tracy, One of the best ways to find out about studies is to register on the Interactive Autism Network website (www.ian.org ). On this website, families are connected with researchers. I am sorry it has been so difficult to find services. It sounds like your daughter has many strengths. Have you taken a look at the Resource Guide on Autism Speaks’ website:http://www.autismspeaks.org/resource-guide ? I should list the services that are available in your area. Some services are covered by insurance, others are not. You may also find the IEP toolkit helpful: http://www.autismspeaks.org/family-services/tool-kits . We are working on a toilet training toolkit, so check back on the website later. 
1:26
Comment From Guest

I have one adult son (22) with early onset autism, an adult daughter who exhibits OCD traits and a son with non-verbal learning problems and some mild sensory issues. Am I reading you correctly – they can seek genetic counseling to help ascertain the risk of the younger two having a child with autism? Would my oldest son need to give a sample to determine the type of autism and if it’s genetic?

1:27
Dear 1:15 Guest. Your questions are bang on. I have answered in part some of them but I wanted to use this response to address a few thinks I may have missed. The genetic tests use either blood or saliva (usually blood) as the source of the DNA. While taking blood can cause some discomfort, that is all you have to do. Then the genetic testing occurs. To understand if there are genetic changes presented that may be ‘familial’ in nature you do have to get DNA from the parents and siblings (and sometimes extended family members). Some of the ‘autism’ genes that have been identified in the past few years (such as SHANK3, NRXN1 and other mentioned earlier) are also being observed to be altered in other disorders such as schizophrenia, OCD and ADHD. It is all very complex. I often say that the only simple thing in autism is that it is complex (both with respect to the clinical presentation and the genetics). The genetic counsellors will know more about assigning risk.
1:29
Comment From Janet

our daughter was diagnosed with PDDNOS at the age of 5.5. At that time, the psychologist was debating whether the diagnosis was appropriate and suggested that we have her retested in 3 to 4 years and that the diagnosis may change. She is very high functioning, with issues primarily being social. She is also very anxious. Is it at all common for a diagnosis in a young child to change or even disappear as they grow older?

1:29
Hi Janet, This is Dr. Dawson. ASD is diagnosed based on a set of behavioral symptoms. Overtime, those symptoms can change, either because of developmental changes or therapy. So, yes, the diagnosis can also change as the behavior changes. The important thing is to consider your child’s individual needs and symptoms. It sounds like the two areas that are challenging are social skills and anxiety. Behavioral interventions, especially Social Skills Training and Cognitive Behavioral Therapy, can be very helpful for higher functioning kids on the spectrum. These therapies can help a child learn to relate socially to other and feel less anxious. Medications can also help reduce anxiety symptoms. To find a clinician in your area, I suggest that you visit the Autism Speaks website and click on our Resource Guide. We sent the link earlier.
1:31
Comment From Guest

Will there be a way to tie the genetics of autism development with the risk of autoimmune disease development as being linked or possibly a genetic predisposition but then something triggers them and why someone with family history of autoimmune and or autism/neuro dysfunction seem to have a genetic link? IT seems like anything could be the trigger, stress, environment, viral, but there has to be some genetic underpinning as to why it can happen to those who later become afflicted. If the genetic predisposition is exposed and known, perhaps things could be done to prevent?

1:32
Great question. Without going on too long, there are an increasing number of research studies investigating this. It is an entirely plausible way to explain environment and genetic links. Dr. Scherer.
1:34
Comment From Brie

Thank you! I would love to have a link to those papers.

1:37
Advance question from Patricia: If a child with autism is making really good progress & is on ADHD meds, what additionally can be done to help irrational fears & anxiety that lead to anger? Meds for an 8 yr. old? If genetic predisposition-a child of alcoholic parents can avoid alcohol; what should an autistic person be taught to avoid? Thanks, Patricia
1:38
Dr. Dawson, here. Hi, Patricia. 
There is a treatment method called Cognitive Behavioral Therapy which has been shown to help children with autism who feel anxious do better. The child is taught strategies for coping with his or her fears before it leads to an emotional outburst. There are also medications that can specifically help with anxiety. Often, a combination of both behavioral therapy and medication is used. 
1:38
Advance question from Muhammad and Sabrina: Hi, My 6 1/2 years old son is second in 3 brothers , and elder and younger than him are 100 % normal kids but as he was growing elder his habits were not satisfactory all the times complains form teachers we were also known of all his habits then we consult a doctor a he prescribed us Ratline tab and call this as ADHA after a long treatment we haven’t seen any improvements after about 2 years of treatment we consult another doctor he prescribed us respedrol and called it as Autism.
1:39
Dr. Dawson, here. Hi Muhammad and Sabrina. Autism is frequently associated with attention difficulties (called ADHD) and medication can sometimes be helpful. I hope that your son is also receiving educational and behavioral therapies to help him succeed at home and school. To find out more about the different therapies that are available, you can visit our website. Seehttp://www.autismspeaks.org/family-services/tool-kits .
1:43
From Dr. Scherer: I have to get back to the laboratory now. I wanted to close by saying how important it is for families to get information from relevant and trusted websites (and other sources) such as Autism Speaks. The reason autism research has been so successful in the past decade is because the clinicians, scientists, funders and families are all working together. Many of my best ideas arise directly from listening to the questions the families are asking. This webinar was also a good learning experience for me today. Thank you. Dr. Steve Scherer. And from Dr. Dawson: Thanks, everyone, for such great questions. Forgive us for not being able to all of them. We’ll be posting a transcript of this webchat on the Autism Speaks blog atblog.autismspeaks.org.

LIVE Chat with Jed Baker

October 12, 2011 2 comments

Please join us on Friday, October 14 for a LIVE Chat with Jed Baker at 12 pm EDT. Jed will be here to discuss several topics including social skills training as we honor the U.S. Department of Labor’s National Disability Employment Awareness month.

Jed Baker, Ph.D. is the director of the Social Skills Training Project, an organization serving individuals with autism and social communication problems.  He is on the professional advisory board of Autism Today, ASPEN, ANSWER, YAI, the Kelberman Center and several other autism organizations. In addition, he writes, lectures, and provides training internationally on the topic of social skills training and managing challenging behaviors.  He is an award winning author of five books on social skills training and managing challenging behaviors. His work has also been featured on ABC World News, Nightline, Fox News, the CBS Early Show, and the Discovery Health Channel.

Books and Resources available at www.jedbaker.com

Social Skills and Frustration Management DVD This dynamic presentation is extremely valuable to all family members and professionals working with individuals with autism spectrum disorders, attention deficit disorders, learning disabilities, mood and anxiety disorders, and other issues that impact social-emotional functioning

Preparing for Life: The Complete Handbook for Transitioning to Adulthood for Those with Autism and Aspergers Syndrome. A comprehensive book to create plans to transition to adult life. Practical information on applying for college, vocational training, residential programs, and financial assistance is provided along with guidelines for helping students understand their strengths and challenges so they can advocate for themselves. The book contains over 70 skill lessons pertaining to friendship, dating, employment, transportation, finances and managing frustration and anxiety, allowing students to prepare for all aspects of adult life.

Social Skills Picture Book for High School and Beyond This fully illustrated book includes real photographs of teens and adults demonstrating many of the skills from Preparing for Life in picture form

Social Skills Training for Children and Adolescents with Aspergers and Social –Communication Problems This comprehensive social skill manual has 70 skill lessons, behavior management strategies, and peer sensitivity lessons to be used at home or in school

The Social Skills Picture Book: Teaching Play, Emotion and Communication to Children with Autism This book displays real pictures of children demonstrating over 27 different skills. It is meant for younger students who learn better by seeing skills than hearing an explanation of skills.

No More Meltdowns: Positive Strategies for Dealing with and Preventing Out-of-Control Behavior This new release provides tools to de-escalate meltdowns, understand your child’s triggers and prevent problems situations, and improve the relationship with your child.

No More Meltdowns is now an App!
A Companion website and mobile app to the book No More Meltdowns. Record behavior while it happens: Use a PC to enter behaviors and triggers online, or use an iPhone, iPad, iPod Touch or touch-based smartphone. Analyze triggers to behaviors and use the quick prevention plan guides to help manage and prevent challenging behaviors. Available at www.symtrend.com/nmm.

Be a Friend Music CD (www.socialskillsmusic.com): 16 songs to reinforce social skills for children 2-9.

Upcoming workshops

All Kids Can Succeed!

Wednesday, Nov 30, 2011

JCC-Rockland, 450 West Nyack Road, Nyack, NY

Sponsored by Jewish Family Services of Rockland County, NY. email info@bossyfrog.​com.

For Dr. Baker’s complete schedule of workshops, go to www.jedbaker.com

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