Archive

Posts Tagged ‘siblings’

In Their Own Words – I’m Moving Out

November 4, 2011 28 comments

This is a guest blog post by Ali Dyer, the Social Media Coordinator at Autism Speaks. Her older brother Jeff has autism.

You can download the Family Services Sibling Support Tool Kit here

I am moving out. It is finally happening. Not like all of my other stints away. In this move, I will transition to the start of the rest of my life. Yikes. Don’t get me wrong, I have lived away before. But I always returned home, back to the nest.

I went away for college, but came home. I spent a period of time in Ireland, but came home. Oh yes and I lived down under in Australia, not once, but twice. Then I did the gypsy thing in New York City, bouncing from sublease to sublease. Again though, I came home.

Ever since Jeff moved into his group home, he has been on my oldest brother Tommy and me to move out as well. He moved, why haven’t we?

Believe me, the irony is not lost on us.

Growing up, the extent of our family’s travel was a 3-hour car ride out east. Professionals advised my parents against having my brother Jeff travel via airplane because of his sensory issues. So we just never did. It was fine. Our family vacations have always been wonderful, just different. It is the way it is.

My parents, bless them, have encouraged Tommy and I to go and see the world. They financed each and every trip and encouraged us to live each experience to the fullest. Believe me, I did, drinking in every moment, but something was always missing. Jeff.

Autism has always been a part of me. I don’t want to be dramatic, but I can literally trace every single decision back to autism in some way. I never thought anything of it. We come from a small town where everyone knows us and looks out for Jeff. During my times away, I wasn’t Jeff’s sister, I was just Alison. No amount of explaining Jeff can do him justice. He is so much more than just words, he is my heart. Majority of my post-high school friends have an unclear picture of my brother.

I have lived my life, often times to extremes. Nothing is ever really mundane and the pendulum swings. Returning home always brings me back to center, to a balance.

Osho (2006), a professor of philosophy and guru, takes the approach of Lao Tzu, “Balance is something that comes out of experiencing all the dimensions of life. Balance is something that happens […] Balance has tremendous beauty and grace.”Jeffrey navigates through life in a beautiful and graceful way. He is inspiring. Jeffrey shows me true beauty and he really is my grace.

But rather than get on my enlightened urbanite horse, I will quote Hoddington Carter that says more than any blog I can ever write. Carter says, “There are two lasting bequests we can give our children: one is roots, the other is wings.”

My parents have given me my wings. They have given me the tools to be successful, but more importantly the love and support to forge my own path. They have shown me how to treat people and how to live a full life through their stellar example. I hope they know that I carry them with me everywhere and just how grateful I am.

But it is Jeffrey that has given me roots. For I know every time I head home to visit, I will cater to his every need. He will continue to point out every imperfection on my face and I will continue to dance or sing to him on cue. No matter what I may deem important or value in a materialistic sense will all be left at the door.

Because if there is one thing I have learned about autism, is that it strips you down. Jeffrey doesn’t care about the fluff: what cool event I went to or fabulous article of clothing I just acquired. He just wants his sister. And his sister, I will always be.

Look out New York City!

Jeff posing with some custom artwork for my new place

Click here to download the Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.

Osho. (2006). The book of understanding. (p. 26). New York: Crown Publishing. Retrieved from http://ow.ly/7jbxm

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.

If environmental factors can lead to autism, why does only one of my twin boys have autism?

October 21, 2011 41 comments


This week’s “Got Questions?” response comes from Alycia Halladay, PhD, Autism Speaks’ director of research for environmental science
.

Today’s question came in response to my last blog post. In it, I explained that when scientists talk about the “environmental factors” that increase the risk of a disorder, they’re referring to pretty much any influence beyond genetics.

In the case of autism, the clearest evidence of environmental influence seems to surround very early events such as conception, pregnancy and birth. Those with the strongest link include parental age at time of conception (both mom and dad), maternal nutrition or illness during pregnancy, and certain birth complications.

The commenter’s question is a great one that scientists are actively exploring. The short answer is that inherited genes (DNA) and environmental factors seem to interact to influence whether an infant goes on to develop autism. So if the commenter’s twins are fraternal (meaning they share about half their DNA), the difference in their genetic makeup might explain why only one developed autism.

But what if the boys are identical twins–meaning they share exactly the same DNA? In this case, something beyond genes likely accounts for the different outcomes. Comparing the rates of autism among identical and fraternal twins provides clues.

In July, researchers used our Autism Genetic Resource Exchange (AGRE) to complete the largest autism twin study to date. They found a 70 percent overlap in autism among identical twins and a 35 percent overlap among fraternal twins. That overlap between fraternal twins is much higher than the estimated 19 percent overlap between different-age siblings.

These numbers tell us that it’s not always genes alone that determine whether a child develops autism. If it were, two identical twins would always share the same outcome, and the rate of a shared autism among fraternal twins would look more like that for different-age siblings. So we conclude that shared environmental influences are also at play.

Although twins share very similar pregnancy and birth environments, those environments aren’t exactly the same. For example, twins can have different positions in the womb or different placentas, and this can affect such environmental influences as blood and oxygen flow. Indeed, twins often have different birth weights, a known risk factor for autism.

It’s important to remember that “environmental” influences such as these don’t cause autism by themselves. Rather, if a child has a genetic predisposition for developing autism, these influences may further increase the risk.

Autism Speaks continues to fund and otherwise support research on both genetic and nongenetic risk factors for autism. EARLI is a network of researchers who follow mothers of children with autism beginning at the start of another pregnancy. IBIS is a study of early brain development in the younger siblings of children with autism. These studies depend on the participation and support of the autism community.  Please visit our Participate in Research page to learn more.

Importantly, these studies provide insights into the underlying biology of different types of autism. This in turn becomes a basis for developing ways to treat and possibly prevent autism. As always, the goal of the research we support is to improve the lives of all on the autism spectrum.

And thanks for the question. Please keep them coming.

LIVE Chat with Dr. Ricki Robinson Transcript

September 27, 2011 2 comments

On Monday September 26 Dr. Ricki Robinson, author of  Autism Solutions: How To Create a Healthy And Meaningful Life For Your Child, hosted a LIVA Facebook Chat.

Having a child with ASD can and will have an impact on your immediate family and extended family. While it is easy to be distracted by your child’s often overwhelming needs, it is important to carve out time for your family and friends. Often they can be your best support. Additionally you may need help dealing with many concerns, including those that are emotionally charged, such as how to tell others about your child, whether to have more children, how to incorporate siblings into his program, and practical ones such as financing respite care and just organizing your life and family, as well as getting your own job at work done.

2:34
Hi everyone! We’ll be live with Dr Ricki Robinson in just under 30 minutes, at 3PM EST. In the meantime, feel free to submit questions!
2:42
Type any questions in the box below and hit ‘send’. Don’t worry if you can’t see your question, it goes straight to us!
2:42
We’ll be live with Dr Ricki in 20 minutes!
2:52
Today Dr Robinson will be …..taking questions about Having a child with ASD the impact on your immediate family and extended family.
2:59
Hi Everyone, we’re here with Dr Ricki Robinson. We’re thrilled to have her back after the last live chat she did with us!
3:00
Dr Robinson: I am so pleased to be with you again. My first chat was an exciting, intense hour! I’m a pediatrician and I’ve devoted my practice to the care of children and families affected by autism for the past 20 years.
3:01
Dr Robinson: I have recently published Autism Solutions: How to Create a Healthy and Meaningful life for your child, in which I share with families what I’ve learned over the years that has helped their children move up the developmental ladder, and problem solve the challenges they meet along the way
3:02
Dr Ricki: A portion of the proceeds of the book of course gets donated to our host, Autism Speaks!
3:02
www.DrRickiRobinson.com for more info!
3:03
So without further ado…. first question!
3:03
Comment From Loni Alpino

Is there any monetary aid for an Autistic child for feedback and therapy services?

3:04
Hi Loni!
3:04
You ask a question that plagues every parent and family who has a child with autism.
3:05
There are so many stressers that families face, and financial issues are one of the primary ones that we see in families of children with special needs.
3:05
There are potential sources of aid…. many of them depend on the state in which you’re living.
3:07
Many of the services in some of the states are provided for through state agencies. As an example, I come from California, and children who have been diagnosed with ASD qualify for services through both the educational system and the California department of Developmental Disabilities. So my recommendation is to mine the services available in your community for funding, and don’t forget about medical insurance.
3:08
Through medical insurance if you have a willing physician, you can sometimes get funded for ancillary services that might be covered by your own insurance policy, or through Medicaid, especially if your child has other medical diagnoses such as seizures, GI problems or special dietary needs.
3:09
additionally approximately 25 states have now passed state insurance reform for autism service coverage to provide many of the services that occur in home for your child.
3:10
Once you know where all your sources of funding might be, then take a critical look at your treatment plan that is required for your child, and see how each element might be covered by each of these resources to put together the most robust treatment plan for your child possible.
3:11
For more information about the state supported autism insurance laws in your state, i suggest you go to www.autismvotes.org
3:11
Comment From Guest

My daughter is 2 years old and was diagnosed autistic on April 1st. I have some family members that keep insisting she’s just delayed. They don’t understand it’s more than her not talking yet. She doesn’t respond to her name, doesn’t point to let us know what she wants and really has never babbled. She makes noises, but not what I would call babbling. Any suggestions.

3:12
Your situation is very common in families where a child has been diagnosed with special needs, most especially autism.
3:13
There are so many emotional processes that are occurring for the family as a unit, and for each of you individually after getting this diagnosis.
3:14
Of course there is the initial shock that can send you spiraling into a true grieving process, and each of you in the family will work through this in your own time frame. Part of that process includes a stage of denial as particularly i see this in family members who aren’t living with your child day to day.
3:15
It will take them often longer to come to terms with the diagnosis and along with everything else we have to be patient for these things to happen. I particularly see this in grandparents, whose often have forgotten what it was like in the early years with their children, and the bumps that happen along the way.
3:16
To that end Autism Speaks has published ‘A Grandparent’s Guide To Autism’, that was developed specifically to help grandparents understand and deal with the emotions related to a diagnosis.
3:18
I find that when other family members get some understanding of what autism is, and they can get beyond the autism label to understand what are the strengths and challenges of the child who has autism, and learn about ways in which they can learn to relate and then help their family, that this will put the family members back on track to becoming a support that you might be able to rely on.
3:22
There are also professionals who understand this process who can provide help for those who are really struggling, and sometimes that is necessary. Finding a caring pediatrician with whom you are able to share these issues may provide you the support you need to be able to take the help back to your family members. In my experience having such a case manager for the long term allows you to not only meet both the medical needs of your child and your family, but also your emotional needs.
3:22
Comment From Maureen Early

What is the best way to educate your extended family about autism, especially when it looks like a child is tantruming because they’re “naughty” instead of due to their symptoms of autism.

3:22
Hi Maureen!
3:23
I am so glad that you asked that question, because it is one of my pet peeves.
3:23
So often children, all the way up to adults with autism, are described by their behavior, as you noted.
3:23
and yet…. this behavior often comes the greatest clue that we have to what a child is thinking or feeling.
3:24
and why do I say that? When a child is not able to communicate, and yet has intent, what would we expect them to do?
3:24
Of course they’re going to do something to express themselves.
3:25
So our job is to become a detective, and to try to figure out what they’re trying to tell us. So often these behaviors don’t have intent, but are actually a response to the environment. We know that children with autism have unusual responses to the world around them.
3:26
Additionally one of the senses that we have is how we interpret our own bodies. It’s how we know that we’re hungry or that we have a pain, and where that pain is going to. My hypothesis is that it is just as difficult for children with autism to understand this sense as it is for them to understand the world around them.
3:27
Therefore quite often a change in behavior is related to how your child is feeling at that time. If a behavior is persistent and is effecting his quality of life, then it is my experience that a medical illness must be ruled out. I have covered this issue extensively in my book, for those of you who might be concerned that your child may be experiencing a medical problem.
3:28
However it is important that we “demystify” a child’s behavior for your family members. If you can ask your therapy team to help you with language that is understandable to describe these behaviors to your family members so that they can also begin to understand what your child might be expressing. This can be incredibly helpful.
3:29
Comment From Relonda Supel

What therapies and doctors should a child with autism have in place beside the therapy he gets in school and seeing your usually pediatricians

3:29
Hi Relonda!
3:29
Putting your team together is one of the paramount issues for parents and families.
3:30
Depending on your community, there will be a variety of resources that you can tap into.
3:30
If you happen to be in a community where there are few resources, then Autism Speaks has provided a resource guide to help you identify local resources.
3:31
Here’s a link to that guide:http://www.autismspeaks.org/community/fsdb/search.php
3:31
Depending on the resources available, you still need the manager of your team. In general it becomes one of the parents.
3:32
Sometimes you are able to find a professional on your team who has experience in case management. Pediatricians and other physicians sometimes do have this expertise, and you will want to find out about that.
3:33
Deciding on who your team members will be really comes from understanding your individual child. Nowhere in medicine have I experienced a complex disorder requiring so much individualization of a treatment plan.
3:33
When you determine through your professional consultations what your child’s challenges are, then my approach is that every challenge deserves the proper treatment.
3:35
This means that your treatment team will look like a wheel, with the child, parents and family at the center of the wheel, but the therapists as the spokes of the wheel, and the tire of the wheel are all the challenges and barriers that your child faces. What we know is that these challenges will change over time, especially as your child goes into adolescence and into adulthood, and so this therapeutic team will change accordingly.
3:37
That’s a long way of saying that I can’t tell you how many doctors you will need, and you will be the advocate for that, depending on the challenges that arise. Finding team members where you can have an ongoing dialog where they will listen to your concerns is key to finding the right professionals at the right time. And you, as the parent, are the keeper of that key.
3:37
Comment From Lou Melgarejo

My wife and I fear that when our kids are older, our two neuro-typical kids will resent their autistic sister for the restraints that her condition has put on our lives. Do you have any suggestions for raising siblings without resent?

3:38
Hi Lou! You too ask a question that is on the mind of most parents who have more than one child.
3:38
If truth be told, it’s on the mind of all parents, as typical siblings, as they grow up, often become resentful of their siblings, and their perception of their place in the family.
3:39
For siblings of children with autism, these feelings may come sooner, and are more real.
3:39
because off the 24/7 nature of living and helping a child with autism.
3:40
Although I can’t guarantee that you can’t raise siblings without resentment in any family, there are things we can do. I think they first thing you have to do is to help your siblings understand what is happening for their brother or sister.
3:41
We must always inform siblings as directly as possible using age appropriate language, and be certain to not let our fears and worries be evident, as they are able to pick up on these aswell. I like to describe to them, not in the terms of the autism label, but we have to tell them what that really means for their sibling.
3:43
I find that older siblings, who so much crave to have an interaction with their brother or sister, but don’t know how, can be mentored by giving simple techniques and instructions as to how they might be able to engage their sibling in a meaningful way that will be fun for both of them. I find also that having a sibling with autism is a double edged sword: resentment goes hand in hand with guilt.
3:45
Siblings may feel guilty because they do not have autism, and yet may resent the time that you might have to spend with their brother or sister. These issues are best dealt with if brought to the front and center in a way that will help these children deal with their own emotional journey.
3:47
Studies have shown that siblings who have brothers or sisters with ASD often learn to cope quite well. For many learning to be a helpful member of the family becomes second nature. In fact as an adult a sibling one of the helping careers and may become more skilled than their peers in responding positively to their own emotional needs.
3:48
if you happen to have a child who’s having a difficult time, especially as an adolescent you may also need to consider getting them the support they need to work through these emotional issues.
3:48
Comment From Bobbie Jo

sometimes my son seems as if he is bi polar. I expressed my concern and I am told that it is normal for a child that has autisim?

3:49
Actually Bobbie Jo, what you’re describing, which I presume is mood changes, both highs and lows in your son, can occur in autism, but is not necessarily part of autism.
3:51
Often these mood concerns can interfere with your child’s daily life and absolutely derail learning and interactions. if this is the case, then we do have ways of addressing these issues medically. Certainly your son deserves a full medical evaluation. In this case I would suggest asking your primary care physician first, to refer you to a specialist, which might be a child psychiatric or neurologist, or developmental pediatrician who has expertise in this area.
3:53
Mood issues in autism is considered a co-morbid condition that are overlapping the symptoms of the autism. this is not always easy to sort out, and is why you need a physician with expertise to help you determine what is happening for your child, and the correct treatment approach. Again, if you’re having trouble finding a professional in your community who can help you, please check out the Autism Speaks resources guide:http://www.autismspeaks.org/community/fsdb/search.php
3:54
Comment From Joseph

Do you put any emphasis into the new belief that Autistic kids should now also have included in their therapies joint attention therapy?

3:55
I am so glad you asked that question Joseph.
3:57
For children with autism, who at their core have a delay in social and emotional development, it behooves us as part of their treatment program an approach that helps them gain mastery of social interactions. In order to do that one has to go back to the basics, and help a child develop his ability to attend to another in a meaningful way, in order to engage and interact.
3:57
Recent research has confirmed that children who developed joint attention have greater gains in language than those who have not.
3:59
This underscores the hypothesis that strong foundational social and emotional development is really required for a child to be able to think and create. This at the end of the day is what we hope for all children with ASD. So how are you going to do this? There are many techniques that can supplement what your program is, or can be the primary focus of your program, that will support your child developing joint attention and engagement and reciprocity in play.
4:00
I use the DIR/Floortime approach in order to foster these abilities. I have described them fully in “Autism Solutions, and describe how to implement Floortime in the home throughout the day.
4:03
Other approaches that can help include the Early Start Denver Model. Practitioners of these approaches are increasing around the world. Floortime was designed for parents to learn how to interact with their children by understanding how their child learns about the world, what they’re individual differences are that derails this interaction, and then entering their world with this understanding by following their child’s interests.
4:03
If you wish to pursue this, Autism Speaks has a reference library for books on these subjects.
4:04
Remember, shared emotion with others and relationships that are developed are the glue that supports all that your child does.
4:07
I want to leave you with a final message today: I’m sorry I couldn’t get to all your questions, but I hope to be back in the future for more. Just remember: believe in your strength, creativity and love. Your family will help you meet the challenges of raising a child with autism, so you can help your child be the best that he or she can be!
4:08
Autism Speaks: Thanks everyone for coming, and thanks Dr Ricki for another great chat. Sorry we didn’t get to everyone’s questions.
4:08
You can forward any questions to familyservices@autismspeaks.org, or call our autism response team 888 288 4762
4:10
If you’re interested in Dr Ricki’s book, Autism Solutions, check out her site here: http://www.drrickirobinson.com/
4:11
Thanks everyone!

In Their Own Words – Letter to Jaclyn

September 15, 2011 7 comments

This short film is by Brad Dotson, a student at the University of the Arts in Philadelphia who also has Asperger’s Syndrome. Brad made a very personal film about his twin sister, Jaclyn, who has autism.

“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.

In Their Own Words – Today

September 1, 2011 12 comments

This ‘In Their Own Words’ is by Cheairs Graves, who shares her life at Redefining Typical. It through writing and pictures that she shares her journey about Dawson, her son with autism. It is the marriage of the two that makes sharing her journey complete. You can find her on Facebook here.

She tries to play with him.

He walks away.

She tries to talk to him.

He does not answer.

She tries to calm him when he gets upset.

He pushes her away.

Then he looks at her.

He smiles.

He reaches for her hand.

She takes it.

She smiles.

And they walk.

And as I watch them.

I remember words.

Words that came from my father as he would send us off to school.

With a twinkle in his eye and a nod of his head my dad would say, ”Cheairs remember-Today is the first day of the rest of your life.”

So hand in hand my son and daughter walk off to school.

And with a twinkle in my eye and a nod of my head I whisper, ”Mae Mae and Dawson remember-Today is the first day of the rest of your life!”

I breathe.

Today-Yes- Today!

Copyright © cheairs graves August 25, 2011

“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.

In Their Own Words – Seeking a Connection

August 17, 2011 28 comments

This is a guest blog post by Ali Dyer, the Social Media Coordinator at Autism Speaks. Her older brother Jeff has autism. 

As I read  a diary of a mom’sa pink sock sorry,’ I immediately fell back to my younger self trying to connect with my older brother Jeff. I understood what it was like expending endless amounts of energy just to have my brother see me. It seemed back then he just never did. Like my friend Katie, I just wanted to love my sibling.

For years, we worked to have Jeff let us in and for years he wasn’t ready. He used to watch the television with his face practically touching the screen. From the moment I could stand, I would try and wedge myself between him and his object of interest, always to be knocked over. My oldest brother Tom and I never stopped loving him – we actually became more fierce and protective.

My mother is a very talented photographer and so much of our life is captured on film. The photos over the years show us clinging to Jeff. He is either staring off into the distance or running away. I think they are beautiful. They are honest. That is how it was.

Eventually, he came around. Now he can’t get enough of us! But there are times when we go back to the old days, and I have to respect his need for space. He knows that I love him and I’ll be waiting when he is ready.

The photos look more like this now.

Jeff is twenty-six, which comes with a whole new set of challenges. We made it over the hump of him transitioning into a group home. It is more than a year later and we are still making adjustments. To be honest, I don’t know that we ever will fully adjust. Despite that, we will try and keep moving ahead giving Jeff the most productive and full life possible.

I know as time wears on Jeff will need me, but in truth, I will need him so much more.

“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.

Communicating Through Cupcakes

July 7, 2011 23 comments

This is by Lena Rivkin, M.F.A., is an artist and graphologist living in Los Angeles.

Can you count the stars? Impossible! It’s just so comforting to look up and see that they are there, that you can count on them coming out every time. That pretty much describes the way I feel when I’m hanging out with Phillip at his house…when we’re baking cupcakes together. I look up at his face flushed with joy and watch as he adds the final touches – sprinkles, maybe – to the icing of his latest creation. In a fast-paced world, baking with Phillip is a quiet moment in time.

​For those of you who read my previous article about him, you’ll remember that my older brother Phillip, who is severely autistic and nonverbal, loves to stitch needlepoint. I create the designs and Phillip is the craftsman. Our collaboration provides a special connection between our worlds – without words. He has been living for 29 years in a group home administered by New Horizons (a non-profit organization dedicated to helping adults with developmental disabilities) in North Hills, California, and attends a day program at Tierra del Sol in Sunland.

​Since Phillip always exhibits a marked interest in repetitive behavior, for years we have engaged in needlepoint projects together at my house. And lately, we have been hanging out at the place where he lives to bake together.  We particularly enjoy baking cupcakes.  Historically, a recipe for a small cake first occurred in the U.S. in a cookbook appropriately titled American Cookery. It was written by Amelia Simms in 1796. However, the actual word cupcake (because it’s the size of a teacup) was first used in 1828 by Eliza Leslie inSeventy-five Receipts for Pastry, Cakes, and Sweetmeats. When Phillip and I bake cupcakes in 2011, we are entering into an innovative space where we can create an edible form of art.

​First we line each section of the muffin pan with crinkly, colorful paper cups, a simple, repetitive process that Phillip enjoys. Then we make a host of cupcakes, ranging from…oh, red velvet cupcakes with vanilla cream cheese frosting or pineapple-carrot, or dark chocolate with raspberry frosting. (Did you know that the height of the frosting should be about one-third the height of the cupcake? Sometimes, when we are feeling really daring, we make the frosting one half of the whole. It’s fun.) And we make strawberry and chocolate-almond, lemon-fudge, or orange-spice cupcakes too.

​The ingredients for cupcakes are all pretty much the same: butter, sugar, egg, and flour just like a standard layer cake. Yet what we end up with is a creation. For my birthday, we felt really expansive and made a full-size chocolate cake. We design our cupcakes differently every week, even though we start with a very ordinary cake mix. Sometimes we dip dried or fresh fruit into chocolate. The visual effects are very important, just as they are when Phillip is keeping busy translating my designs into his meticulously crafted needlepoint. In fact, while the cupcakes are baking, he works on his needlepoint.

​As with the needlepoint, there is a therapeutic process at work when we are baking. It involves eye and hand coordination as well as the joy of creation – and a sense of place. Although I still take Phillip to my house and other places (museums, parks, stores, and visits to friends), when we make cupcakes, we are enjoying being together in a consistent way in the place where he lives – his house. I feel that I am truly participating in his daily life with these home visits and learning about his activities, as well as the chores that are required of him. I particularly enjoy getting to know the outstanding staff – Samir Qureshi (the House Manager, who is also an excellent cook) and another member of the staff, Jamie Page, who are both an essential part of our weekly baking activity with their supportive and positive help with the baking.  I am also becoming closer to Phillip’s friends.  Everybody loves eating the cupcakes, so there is plenty of joy to pass around! Because the cupcakes bake quickly, while a tantalizing aroma fills the house, we don’t have to wait long to enjoy them.

​Cupcakes have attracted wide interest today. In fact, cupcake-making has become a competitive “sport.” There are actually “cupcake wars” sponsored by food companies where people vie on television to win big prizes for the “best” cupcake recipe. But Phillip and I, his friends and the supportive staff don’t want to enter our cupcake recipes into showcase competition. We simply love the warmth of making them and sharing them in friendship together.

“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.

Camping, uh… sorta

June 23, 2011 15 comments

Katie* is a ten-year old rising fifth grader who lives with her mom, dad, and eight year-old sister Brooke*, who has autism. Oh, and their awesome dog, Winston. When the spirit moves her, she writes at www.diaryofakatie.wordpress.com.

* Not their real names. (Except the dog.) 

Last night Brooke and I went camping. Sort of. We kinda set up the camping gear in my room, cause Mama didn’t want us outside. It was fun anyway. I put up my tent and Brooke slept in my teepee. Yes, we did bring a couple of pillows, stuffed animals and two sleeping bags and a TON of books. I think I might have emptied out Brooke’s whole book shelf! For me, I just brought a few long chapter books.

She got kind of upset last night cause I was sniffling and it makes her ears hurt. She said she was scared. I’m not sure if she was really scared. She might have been, but I think it was more that she was hurt and maybe a little angry. I wouldn’t say scared, but I guess it’s possible.

She doesn’t really understand the names of emotions.They get mixed up in her head and then she doesn’t know what to say so she just says scared. Like when I asked her how she felt when she was crying, she screamed “HAPPY!” And of course I don’t think that was the right answer. We practice with her and it helps a little, but sometimes it’s really frustrating when she screams that she’s happy with tears streaming down her face.

She finally calmed down and we went into our tents. We took all of the books out of the teepee and put them next to it. I think I kinda went overboard with the books. She might have been buried in there! I also put in, in case she finished the books – which was doubtful – a soccer ball, a toy car that I built, and three Barbie dolls. I left about two books in the tent in case she wanted to read before going to sleep. I did the same. I turned on my flashlight and opened my book.

I could hear next to me “MmmmMmmmmMMMmmmmmMMMmm” … the little stimmy noises that she makes. Soon I heard her softly singing, “Row your boat” I just smiled. Sometimes her noises and songs are pretty annoying, but this time I liked it. It made me feel calm. I curled up and fell asleep.

Someday I hope I get to go camping outside, cause the inside version was fun, but I’ll bet the outside version would be even more fun!

“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.

Autism and Cops- When Two Worlds Meet

May 12, 2011 38 comments

This ‘In Their Own Words’ is by Joshua Bongawil, a former intern at Autism Speaks. His 28 year old brother Andrew has autism. They live in American Canyon, Calif.

Andrew, their cousin, and Joshua


When Andrew takes Louie for a walk, he strolls as if both of them are in their own world.  Andrew, in other words, is calm and focused, when he has command of our poodle.   The solace found in a relationship with a pet is one of the traits sometimes associated with people with developmental special needs. This is a part of Andrew’s autism.  I notice this, because I walk with them too.

One reason I describe Andrew’s style of walking the dog as “other worldly” is because his stride is unique. He often flails his arms mildly, turns his head around, or holds the dog’s leash over his shoulder like a heavy bag of footballs.  He does not walk like this because something is wrong with him. These physical attributes are a part of who he is. The other reason Andrew’s world is unique has to do with an encounter with a stranger in a uniform on a spring afternoon.

Our neighborhood is at the foot of a hilly area which can be a very windy place, so residents must take caution when walking the streets.  The caution also refers to the strong security placed in a new suburban development.  I never thought Andrew’s movement or how he walked with Louie could be suspicious until a police officer asked if he could talk to Andrew.

I was taken aback, because Andrew is non-verbal.  The ironic “conversation” went like this.

The police officer stepped out and asked, “Can I talk to you?”

I told him, “Are you talking to us?”

When he affirmed his interest in my brother and me, he asked, “Where do you live?”

I confirmed our street name, as he maintained his watchful eye over Andrew, who stood in his place, but kept turning his head around, as if to say in his mind, “What the heck is going on?”  I decided to watch the officer’s next move.

He looked at my brother, raised his hands around his head but did not touch him and asked, “Is he…?”

“He has special needs,” I replied.

The officer smiled and walked away, but not without some extra courtesy.

I recalled that when Andrew is in his world with Louie, he moves as he sees his fit. Well, this polite cop entered that world. When Andrew meets new people, he doesn’t know how to say, “Hi!”, but he knows how to shake hands. That is exactly what he and the officer did before he went back to his car.

I admit my heart stopped when the cop car approached us from behind, but it started beating normally, when the officer drove off.   My brother and I were literally frozen in moment of confusion, because unless this police offer knew what I meant by “special needs”, a completely different result may have taken place.

But it did not. I shook the officer’s hand and asked for his name.  Officer Mark greeted us goodbye and left us alone.

Autism is a world. That is not just the name of a 2004 documentary, but perfectly describes this experience. In Officer Mark’s world, a young man wearing a baseball cap and casual workout gear, flailing his arms, shaking his head while pulling a dog leash raised some signals.  In Andrew’s world, he was simply taking a walk. What happened, however, when their worlds came together, was not a clash, but an epiphany.

Andrew sensed he was not in trouble. Officer Mark knew Andrew was simply taking a walk. I knew that when there are more people like Mark who open their world to those like Andrew, a walk in the neighborhood is a bit easier for everybody.

“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.

Follow

Get every new post delivered to your Inbox.

Join 1,038 other followers

%d bloggers like this: