Tag Archives: Challenges

Question?: What Is Autism Spectrum Disorder

Richard asks…

Is being in your own little world a part of autism?

I have autism spectrum disorder or aspergers syndrome and I am in my own little world most of the time. It distracts me form my learning I start thinking about star trek or videogames or something else. I wonder is this a part of AS? Because I can be looking at the teacher and daydreaming at the same time and not get the assignment. Are most kids with aspurgers syndrome in there own little worlds? How can I get out of there?

admin answers:

It’s quite common for people with autism spectrum disorders to be in their own world a lot, but not everyone on the autism spectrum is like that and some people who are not on the spectrum are in their own world too.

I think being in our own world a lot can probably be explained at least partly by our environment not being suitable for us. I have Asperger’s syndrome too and I’m in my own world most of the time and I seem to go there when there is either too little or too much stimuli in my environment. I go to my own world in attempt to regulate the stimuli to make it the way I need it to be.

When I was in school I was bored most of the time, because the things we were studying about were too easy for me, so I kept my mind busy by being in my own world a lot, dealing with something more challenging. When I felt lonely and didn’t really have any friends or family to feel close to, I went to my own world to spend time with imaginary, loving friends. At my current working place there is excessive sensory input and I go to my own world a lot to try to block out some of the sensory input and distractions around me. I don’t go to my own world when I’m in a good, suitable environment with an appropriate amount of challenges and sensory experiences and balanced emotions.

I’ve never really attempted to stop being in my own world, because I don’t consider it much of a problem, but I guess that if i wanted to, I’d try to do it by trying to make my environment more suitable somehow, for example by making sure I have something challenging and interesting to do, but a good sensory and emotional environment to do it in.

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Question?: Adhd Diet

Sharon asks…

What are some alternatives to Ritalin and other medications, when treating ADHD in a child?

What are some alternatives to Ritalin and other medications, when treating ADHD in a child?

admin answers:

Hi January Prom Queen,

Good question. Many people do not even consider alternatives. There are many claims of alternatives, but most of them don’t have research to back them up.
1. EEG biofeedback. This is a treatment which has some research but it has been plagued by poor research design and small sample sizes. Yet, I did this approach for 2.5 years or so and it was effective with many of my clients. The major challenges are it can be lengthy, expensive and there is a lack of standardization which is frustrating. It is also not easy to find people in many areas who do EEG biofeedback. See a blog post of mine from 2007 on that topic in my first source link.
2. Pay attention to your diet. Like EEG biofeedback this area is struggling with a lack of robust and large research, same problems small sample sizes and poor research design. However, “don’t eat your fruits and vegetables you’ll get ADHD” It was a blog post about how pesticides recently in a large well-designed study found that pesticides were related to ADHD in typical American children. So, that is worth reading. With more mild cases of ADHd removing foods based upon what is suggested in that article (e.g. Eat local or organic fruits and vegetables). Yet, it is unclear how much that will help you pay attention once you have ADHD.
3. Cogmed Working Memory TrainingTM. I do this program with clients anywhere in the U. S. My son’s results have been amazing. However, I am a clinical psychologist so I was originally swayed by the very good research. Yet, my son is a freshman in high school and he is getting the best grades of his life after doing this program. Read more in my 3rd source below.

So, when looking for alternatives to ADHD medicines be sure to look for research. In my experience of over 7 years of looking for answers for my own son Cogmed Working Memory Training was the best answer I found for my son. He doesn’t take any medications.

Dr. Chaz

So, looking for

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Question?: Treatment For Autism In Adults

Chris asks…

Why is there controversy over the Combating Autism Act? What does it involve?

Autism is not a mental illness, but a neuro-biological disorder. But I’m not sure what category would be best for this question. I hope placing it here in the mental health section does not offend anyone. If it does, I’d like to apologize.

Ok, what exactly is the Combating Autism Act, and why are many parents of Autustic children, and many Autistic adults against it? Will this act find ways to prevent children with this syndrome from being born, or will it simply spread awareness about Autism, and provide treatment so that Autistics can function with more ease in society?

Would this also apply to people with Aspergers? Also, what will this mean for adults who have gone undiagnosed for years, only to find out at 20, 30, and older they have an autistic spectrum disorder? Will they be ostracized even more if Autism is eventually gotten rid of in the future? I’m confused and interested in hearing both sides. Thanks.

admin answers:

The Combating Autism Act is all about diverting funds to research a way to detect autism while the child is in the womb. There already is such a test for cystic fibrosis, spina bifida, and Down Syndrome. I cannot speak for CF or for SB, but I can for the DS. This sounds great, I know! I thought it was at first. My 5 yr old is autistic, and I would have loved to have known in advance that he had it, to have time to prepare, to research, to be more understanding from the start. What I learned though is that after this test for Downs was approved and in place, fewer babies were born with Downs, because the parents chose to abort the babies. A lot of us are seriously against the act because as parents of children with autism, we KNOW that even though our children have serious challenges and life isn’t always fun, our kids are so wonderful! They have moments that just blow you away, and can be so full of love. But, I can guarantee you that parents will not be told this when they test positive, and how unfair is that to abort a child with only hearing the scary, unknown possibilities? I took that stupid test for downs with my youngest child, and it came up positive, although I don’t remember the ‘chance’ they gave, but it was a high chance. I refused to take the amnio, because that can cause miscarriage and babies have been damaged from this. The specialist did everything he could to talk me into aborting my child, because of ‘how difficult it can be to raise a special needs baby’. If I wasn’t strong on my stance I probably would have aborted. How sad is that? My child didn’t have Downs! I found out that that test is not very accurate at all, that there is a high percentage of false positives. So, how many little lives were lost because of one-sided information and fear? It’s our fear that the same exact thing will happen with autism. Thing is, Autism Speaks, one of the biggest fundraisers for autism research, supports the combating autism act, so I don’t support them or any of the other high profile companies. If they would instead focus on testing these children AT BIRTH to determine if they had it, I would give them every dollar I have. But, I cannot and will not support a cause that ‘could’ basically cause a whole ‘type’ of people to be erased from the planet. Here’s a link for you to look at, it’s the one that started opening my eyes.

Http://www.youtube.com/watch?v=B9yFsQm2Bp4

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Question?: Autism Symptoms In Teenagers

Laura asks…

Why do I flap my hands all the time?

I am a 23-year-old male and have had a habit of flapping/wringing my hands when excited, or thinking about something that just ‘makes sense’ so to speak. I do it many times throughout the day.

I was assessed as having ADD when I was 14, but any suggestion of Autism or Aspergers was flatly rejected by the team of professionals. I have observed this trait in Autistic kids and teenagers before with a mix of humour and concern.

Can anyone shed some light for me? Thanks.

admin answers:

It could just be that you like flapping your hands. Not every case of hand flapping alone is autism. ADD has a lot of symptoms shared with autism. If you are really worried about this I would say seek a second opinion from a different group of qualified professionals whose expertize is autism spectrum disorders. Go to the appointment armed with all the behavioral and supportive information you can remember from your youth.

If you are hand flapping but have no other socialization issues, co-ordination problems and other challenges associated with autism be glad. You might have a very slight case of autism but, if hand flipping is the only thing that adversely affects your life then feel lucky dude. I got the full deluxe version of autism. I am 49 years old with few friends. I did not manage my antisocial issues well enough to work among people in a paying job till age 41. I live in the community but ever day is a total struggle. I do not do many things as so called normal people do. I hate being touched, I hate eye contact, I collect odd things and have odd interests. Now trust me I love my life even with all its flaws so I am NOT asking for noe do I need anyones pity. I am just sharing a bit of what the full autism experience looks like day to day.

So even if you have autism feel happy that you did not get the deluxe version I got. Even if you have autism so what. You just focus on being the best person you can be, that should be your lifes mission. If you have autism then you will be a successful autistic. If you do not have autism then you will be a very unique normal person. If you have autism symptoms in addition to the hand flapping you felt were overlooked thats another story. However in closing if hand flapping is the only issue that stands out in your life it really should not concern you. Mark the hand flapping down as one of your fascinating quirks and live life.

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end game

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The big, bold headline in USA Today read, Experimental Drug Gives Hope For Rare Disease, Autism. The sub-heading read Doctors Hope Abaclofen Will Also Improve Socialization Skills In People With Autism.

It went on to describe the success of STX209, or Arbaclofen, in early trials with a small number of patients with Fragile X. The success was most notable in improving social withdrawal in the trial group. Since, according to the article, nearly a third of the population diagnosed with Fragile X also have autism, researchers have high hopes regarding Arbaclofen’s implications for the broader autistic population.

The research is exciting. To call it novel and ground-breaking are not exaggerations. This is big, new, hopeful stuff. But like a lot of exciting, novel, ground-breaking, big, new, hopeful stuff, it comes with questions that need to be answered. The biggest of which, for me, is Is it going to be good for our kids in the long run?

When I read the article, I stopped short at this:

“If an intervention makes progress in helping someone navigate the world on their own terms, that’s good news,” [Ari] Ne’eman says. “But let’s remember that “looking and acting normal” aren’t necessarily the only or best way to do that. … It’s important that we have a meaningful conversation about whether or not we’re focusing on the outcomes that matter for making autistic people happy, instead of focusing on making us appear more non-autistic.”

Hopefully, Arbaclofen does the former. Hopefully, it helps people like my daughter navigate the world more easily ON HER OWN TERMS. Hopefully, it simply mitigates some of her toughest challenges and allows her to still feel as though she is fundamentally who she is. But before we run headlong into embracing any of these revolutionary drugs or ground-breaking therapies, I think we have a responsibility to ask those questions. To, as Ari’s quote implies to me, engage in a meaningful dialogue about the cost to our kids. Because, like it or not, there’s always a cost.

One of the ‘core symptoms of autism’ that is mentioned in the article and that many drugs seek to address is repetitive behavior. I have to wonder, for whom are we addressing repetitive behavior? Is it really harmful to autistics? Is finger flicking or rocking or otherwise stimming really an impediment to a successful life? Or are they really problems more for US – the NTs who become uneasy because we have no idea how to react to someone who doesn’t fit the mold of what makes US comfortable? And most importantly from my perspective, what happens to the impulse to stim when we quell the behavior that it results in? Does it disappear? Blow off into the wind? Break down into waste and find its way out of the body?

Stimming serves a purpose. All behavior does. Ask someone autistic. I have. And the answers I’ve gotten are “Calming. Soothing. Shutting out an overwhelming world. Focusing. Freeing. Comforting. “

So take away the vehicle for all of that – for calming, soothing, shutting out an overwhelming world, focusing, freeing, comforting – and what do you leave in its place? Without the behavior that served those purposes, how does a person who might very well live in a constant state of high alert, who is unable to filter the constant sensory barrage of this life, for whom there is no natural hierarchy of input, supposed to compensate for all of that overwhelm? What tools do you leave them in return for the one that you’ve taken away? Or do you simply take it away because it’s not normal and not normal is harmful?

I wrote the above and put it into my Drafts file the day that I first read the article. And then I walked away. It was too big to process in one sitting. I needed to sit with it awhile, to chew on it and to think through its huge and frankly, kinda scary implications. I had to reach a point where I was ready to say out loud, Yes, there was a time, early on, before I knew anything different, that all I wanted was for my kid to look normal. Because looking normal meant acting normal which meant being accepted by society which meant an easier life. Right? Isn’t that the formula? Isn’t that how it works? Change behavior, change a life. Right?

And then I had to figure out how to say No, that’s not it. This isn’t math; it’s life and life is messy and sticky and doesn’t lend itself to nice, neat equations and pretty little formulas. That suppressing who we are without a valid and comfortable and AUTHENTIC means to express what we NEED to express can be far more dangerous than not fitting in. That being taught to pass for something that you’re not and succeeding at it may mean success on the outside but what the hell does it mean for the inside? That being taught that what you are is not okay and that you therefore need to pass as something that you’re not can be deadly. That self-esteem and confidence and self-love and the deepest of personal truths are what are on the line. That I’m not being overly dramatic in taking it there. That I know that because I’ve read so many blog posts and had so many conversations with autistic adults who teetered on the edges at various points in their lives – who literally contemplated suicide, or tried, because the message that they got – whether it was the one that was intended to be delivered or not – was that who they are was not okay.

I walk the line here. It’s not a free-for-all. There ARE behaviors that are not okay. We live in a civilized society. There are some reasonable expectations within that structure that we, as participants in it must learn to meet. That we won’t hurt others. That we will respect others’ privacy and safety and dignity just as we need and expect them to respect ours. There are skills that are necessary to enable us to interact with others, to make friends if we so desire, to find and keep employment. They are important to learn.

And so too, life is absolutely, positively, without question, easier when you have the ability to make yourself understood in some fashion. And it’s sure as hell easiest when that fashion is the same as everyone else’s.

So by no means do I mean to imply that I think that we should not teach our autistic kids to play by society’s rules just as we do with any kid.

But for me, the underlying questions loom large in every single attempt I make to give my child the tools to conform, to communicate, to participate.

At what cost?

Is it still going to be good for her when she’s no longer a kid?

When she looks back will she say that I gave her the tools to succeed as she was or will she ask why I seemed so intent on changing who she was? 

Yesterday, with this post and all of its big, scary questions still safely tucked away in my Drafts folder, I read an article about California’s ban on Gay Conversion Therapy for children under 18. For the blissfully uninitiated, GCT is the highly controversial and nearly universally condemned practice of attempting to change a person’s sexual orientation through some twisted version of psychotherapy. There is overwhelming evidence that the practice tends far more often to result in depression and suicidal ideation than heterosexualization (no, that’s not a word, but it’s as absurd as the whole concept.)

Just for context, let’s play a little game. Are you straight? If so, do you think that if I gave you aversion therapy – you know, like an electric shock every time I showed you a picture of heterosexual sex – that it might turn you gay? How about if I inundated you with photos of homosexual acts and rewarded you for showing arousal? No? What if I simply told you that your heterosexual feelings were wrong. That they didn’t conform (or that, if not society, then God, had a problem with you acting on them). That you could still BE gay, but you couldn’t ACT gay anymore. So what would happen then?

Well, according to story after story from those who have participated in this practice, what usually happens is that you either fail miserably at being what you’re not — OR — you ‘succeed’ and manage to live the life of someone you’re not. Which leads us back to the ‘overwhelming evidence that such therapy tends far more often to result in depression and suicidal ideation than heterosexualization.’

So what if you’re autistic? And I tell you that it’s okay to BE autistic but not to ACT autistic? Then what?

Is homosexual conversion therapy a perfect parallel to administering drugs for social impairments? God, no. Really, really far from it obviously. But do I think there’s a common lesson in them? Well, yeah, I do. Because when I read the second article, I found myself thinking immediately of the first.

So here I am, dragging this post kicking and screaming from the Drafts folder and out into the light of day.

I don’t have answers. I never claim to. I just have questions that I think we need to remember to ask.

I’ll end with this – based on my limited reading about Arbaclofen, I lean toward thinking that it’s likely a win. That it will indeed not just offer some relief to those who struggle to communicate, but at the same time hopefully give researchers vital information on how the process all works. But long before I’d give it to my own child, I’d have to do a LOT more research. And then I’d have to ask the big questions.

At what cost? 

And

What’s the REAL end game?

Thank you to Ari for making me think, forcing me to examine my approach and keeping me honest about what matters most.

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“Whole Person,” Family-Centered Medical Care Addresses The Individual’s And The Family’s Unique Set Of Needs And Challenges In Autism

Main Category: Autism
Article Date: 13 Aug 2012 – 0:00 PDT Current ratings for:
“Whole Person,” Family-Centered Medical Care Addresses The Individual’s And The Family’s Unique Set Of Needs And Challenges In Autism
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Over 400 attendees from across the U.S. and around the world participated in the first national conference for families and professionals, “Treating the Whole Person with Autism: Comprehensive Care for Children and Adolescents with ASD.”

Autism Speaks, the world’s leading autism science and advocacy organization, organized and hosted the conference in collaboration with educational partners at Nationwide Children’s Hospital (NCH), The Ohio State University Wexner Medical Center, the American Academy of Pediatrics (AAP), and the Health Resources and Services Administration (HRSA).

“Autism Speaks’ Autism Treatment Network (ATN) is a key initiative aimed at improving the health and well-being of individuals with ASD,” remarked Daniel Coury, M.D., ATN medical director and chief of Developmental & Behavioral Pediatrics at Nationwide Children’s Hospital. “It provides “whole person,” family-centered medical care which aims to address the individual’s and the family’s unique set of needs and challenges. We’re excited to build upon these efforts through this national conference with Autism Speaks and our other conference partners.”

The conference provided a forum for both families and professionals to learn about current guidance for addressing associated medical issues, and developing approaches to care that integrate behavioral and medical approaches across the lifespan.

“The theme of this conference, treating the whole person, reflects our ultimate goal of helping individuals with ASD to have healthy and successful lives,” stated Geraldine Dawson, Ph.D., chief science officer at Autism Speaks. These themes were highlighted by the two conference keynote speakers. Ricki Robinson, M.D., M.P.H., co-director of the Descanso Medical Center for Development and Learning, who served as the first speaker, encouraged practitioners to view individuals with ASD through a wide array of “lenses” that together paint a total picture of the child’s life. These lenses include the child’s physical and mental health, behaviors, intellectual interests and creative pursuits. By seeing the whole child, treatment and care plans can be tailored to address the individuals’ needs.

Peter Gerhardt, Ed.D., director of the McCarton Upper School and chair of the Scientific Council for the Organization for Autism Research, emphasized the need to continually think of the changing care needs across the lifespan. Dr. Gerhardt stressed the importance of making optimizing adult outcomes a much higher research priority. In particular, he noted the need to identify and focus on meaningful knowledge and skills vital for independence and fulfillment. This emphasis on care across the lifespan was further supported in the presentation by Marsha Mailick Seltzer, Ph.D., professor and director of the Waisman Center at the University of Wisconsin. A key point was the importance for researchers, clinicians, and advocates to expand their view of autism beyond childhood and to consider individuals with ASD within the context of their families. Her team’s research on adolescents and adults with ASD looks at how ASD symptoms change across the lifespan. They observed in their data that overall there is stability or some improvement in symptoms and behavior problems over time. However, they noted that there can be stage-related changes, a critical one being the exit from high school, after which improvement in symptoms slows. Moreover, after high school, income level becomes a risk factor in the worsening of problem behaviors with those in low income groups at greatest risk regardless of intellectual ability.

The conference included general science sessions providing recent developments on health-related issues for individuals with ASD, and concurrent sessions tailored to families and professionals, respectively, that provided practical examples and discussion on the identification, management and treatment of medical conditions often associated with ASD. The sessions addressed immune dysfunction in autism, metabolic dysfunction, gastrointestinal dysfunction including the GI microenvironment and impaired carbohydrate digestion, nutrition, sleep disorders, the prevalence and management of psychiatric disorders and challenging behaviors, an overview of cognitive behavioral therapies, and the trajectories of development during adolescence and adulthood. The meeting concluded with family perspectives on how to coordinate and provide care both at home and in the clinical setting.

Some highlights include the presentation by Alessio Fasano, M.D. which was focused on the relationship between genes and environment in the GI problems in individuals with ASD. Dr. Fasano, professor of pediatrics, medicine and physiology, and director of the Mucosal Biology Research Center and the Center for Celiac Research at the University of Maryland School of Medicine, noted that progress is being made in the field to better understand the biology of the gut environment but that to be effective in leading to treatments, it is going to be important to integrate the findings across these areas to “connect the dots” in building a full picture of the nature of GI disorders in ASD. Brent Williams, Ph.D., associate research scientist at Columbia University reported on his on-going research looking at impaired carbohydrate metabolism in individuals with ASD, which highlights that GI dysfunction may be attributable to distinct molecular and microbial mechanisms in individuals with ASD.

“Our hope is that both the families and the clinicians who attended this conference left with practical information that they can use in their everyday lives at home or in their clinical practice.” remarked Clara Lajonchere, Ph.D., vice president of clinical programs at Autism Speaks, and chair of the conference planning committee. “Our aim is to hold this conference annually to ensure that the community at large benefits from what is being learned through research and clinical practice.”

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Autism: 11 frequently asked questions answered

Did you know that parents of children with autism like it when you ask them questions about their experience? At least I do. Sometimes we get tongue tied when answering because autism is complicated, and because we are emotional. Here is a list of the 11 most frequent questions that I am asked, along with answers:

1) What is autism, and how severe is Matthew’s case?

Autism is a neurological disorder; not a disease. It is a broad spectrum disorder, meaning that people with autism can be a little autistic or very autistic. Thus, it is possible to be bright, verbal, and autistic as well as mentally retarded, non-verbal and autistic. All share deficits to some degree in three areas:

social interactionverbal and nonverbal communicationrepetitive behaviors or interests.

In addition, many have unusual responses to sensory experiences, such as certain sounds or the way objects look. “They” are not all alike. Individuals with autism have unique challenges, quirks, and interests. So it is hard for me to describe where Matthew falls on the autism spectrum. He is honest, friendly, hard working and very funny. He’s frustrated by his inability to figure things out sometimes, and that makes him angry. But he’s learning to keep how to ask for help, and I admire him for that.

2)      How old was Matthew when he was diagnosed?

Matthew was 2 years old when we noticed that he wasn’t talking as much as most toddlers his age. We also worried about his intense interest in lights, gates and drains. Developmental specialists told us he was not autistic, but developmentally delayed. We thought that meant he could catch up. Matthew was not formally diagnosed until he was 5, and by then, we had figured it out. That was many years ago. Developmental specialists are able to detect autism much earlier these days.

3) How did you handle the diagnosis?

I was sad and scared, but determined to “turn things around”. We tried every kind of therapy, even those that seemed whacky. I wish I’d known someone like the future me to  to turn to for reassurance and support. Parents now have tremendous resources-one of my favorites is THE THINKING PERSON’S GUIDE TO AUTISM.

4)      What do you think causes autism?

I’m on the side of science, and at present, most researchers think autism is caused by a combination of genetic and environmental factors – and it’s quite possible that different people’s symptoms have different causes.

5)      How has having a brother with autism affected Matthew’s brothers Andy and John?

It was especially hard for Andy, who was just two years younger than Matthew, for many years. The  two played a lot when they were babies, and then Matthew withdrew. Andy was also teased about Matthew’s peculiar behavior. John, who is 7 years younger than Matthew,   was never at the same school as Matthew, but home life was chaotic to be sure. Andy is now 24, and John is 19. They are great with Matthew, and are more tolerant than most of the differences in others.

6)      I hear that 80% of couples with a child with autism get divorced. How do you stay married?

I’m not sure anyone really knows the real statistics, but HERE is how I stay married

7)      How do you handle the stress?

It is a challenge. Best thing I ever did you manage the stress was to talk to a therapist. Finding helpers is also crucial. It’s very important for everyone in your family that you take care of yourself.

8)      How in the world did you learn to be so patient?

I believe that everyone has more patience and they find it when they are tested!

9)      Do you worry about what will happen to Matthew when you die?

Yes, but I have made plans,(more about that later) and you can too. Start by reading the Autism Speaks Transition Tookit.

10)      One piece of advice for parents of a newly diagnosed child?

Reach out to parents who have been in your shoes. They can help you. My hand is raised!

11)        What is one thing you wish you knew during the challenging times that you know now?

I need to mention three things:

a)  Try to remember how hard it is for your child to adapt to the “regular” world.

b) It get’s better. I enjoy Matthew so much.

c) When you come across people who stare, or snicker, or worse, realize that they just don’t understand what you are dealing with. I’ve learned that it is better to show them how you relate to your child rather than tell them off. One of my most unforgettable moments was at the Oakland Airport Baggage claim after a long and meltdown rich flight with Matthew, who was a teenager at the time. A man that I thought had been staring at us disapprovingly all day tapped me on the shoulder and said ” I’ve been watching you in action today, and you have taught me a lot. Thank you.”

What are your questions? Do you need resources? Email me here lshumaker@sfgate.com and I will do my very best to help.

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Don’t miss..

Autism and Technology:
Resources and opportunities for Transitional Age Youth, an interactive discussion.

Topics include: Independent Living- Education and Employment.

Audience: YOU, The general public; people with disabilities, their families and friends; veterans, legal community,  vocational rehabilitation; mental and social service providers.

Friday, August 17th, 2011, 1:00 pm – 4:00 pm
Koret Auditorium, San Francisco Public Library
100 Larkin St.
San Francisco CA 94102

RSVP Steven Leibof sleibof@pwdf.org Call at (415) 931-3070 . For anyone needing sign language interpreters,  please contact us no later than August 10, 2012.

CLICK HERE to learn more about speakers.

ALSO, The Morgan Autism Center Conference is September 22. More about it soon, but REGISTER NOW because it is going to be amazing. (Carol Gray is keynote!)

______________

SIGN UP for myautismteam.com. The more of us that do, the better.

FOLLOW ME on FACEBOOK and TWITTER.

Read the first three chapters of A REGULAR GUY: GROWING UP WITH AUTISM here.

You’ll be hooked.

View the original article here

rallying cry

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I have found that this need not be – can not be – an all or none proposition for me or my daughter. That there are indeed parts of autism that can be celebrated. That there are challenges that can be reframed over time – that may well manifest themselves as gifts in the right settings. That in some ways, autism is quite simply pretty integral to the amazing little person that I would give my left arm for. Looking at my incredible 6 ½ year-old girl, I no longer know how to separate Brooke from autism or autism from Brooke

… I still want desperately to help her mitigate the challenges of autism. I still want to give Brooke the tools that can make life less hard for her. It tears my heart out to see her struggle. But to demonize autism is to demonize a big part of who my little girl is. And I find myself less and less capable of doing that. It’s messier than that. It’s sticky and it’s hard and it doesn’t lend itself to a surgical extraction.

~ Middle Ground, Diary 2009

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I’ve heard it said that you can’t hate autism and love a person with autism at the same time. I don’t think that’s true. I think you can abhor the thing that makes your child’s life hard. I think you can despise the challenges that he is forced to face. I think you can desperately wish that she didn’t have to struggle with the things that come so naturally to others. I think you can love your child with the ferocity and tenderness that can only coexist in the heart of a parent, while simultaneously hating the thing that denies him an effective method of communicating his most basic wants and needs.

But, I worry – really worry – about the consequences of that anger – particularly when it’s expressed in front of our kids.

We gather together and rally the troops for battle.

We shout from bully pulpits …

We must win this fight against autism! 

We will do everything in our power to combat autism!

We must find a cure for this thing we call autism!

We will continue to use every resource at our disposal to battle autism!

Or even the somewhat more benign ..

We are doing everything in our power to ensure a brighter future for people who struggle with autism.

Every one of those was a real sentence from a real gathering I attended earlier in the week. Lest assumptions begin to fly, I think it’s important to note that the only one that was uttered by a staff member of the event’s sponsor was the last one. All the others were from invited speakers.

I watched the autistic children and adults who sat with their families and who listened and took it all in. I cringed and hoped that perhaps the little boy directly in front of me didn’t hear it, didn’t process it, but then I think of my Brooke. At age nine, she rattles of ‘Remember whens’ like water – “Remember when I was three and you were sorry and I cried and then you gave me the white water?” Yes, my sweet, and I remember thinking that you had no awareness of what was going on around you then. Foolish, foolish me.

So what of it? What happens as our children sit in the crowd and hear the rallying cries? How on earth do  we convince them to feel safe and respected and cherished and valued when we tell them that such a big part of who they are is public enemy number one. What must that do to their self-image? How can that feel?

What if we sat in those crowds while the speaker at the podium cried,

We must win this fight against brown hair!

We will do everything in our power to combat blue eyes! 

We must find a cure for this thing we call femaleness! 

We will continue to use every resource at our disposal to battle heterosexuality!

We are doing everything in our power to ensure a brighter future for people who struggle with white skin! 

How would that feel?

Would it be enough to say, “Oh, don’t worry. I don’t hate you; just your gender.” Or “I don’t want to defeat you; just your sexuality.”?

I know that these are desperately imperfect parallels. I get it. I know that the color of our eyes or our hair does not intrinsically challenge us. I know that neither sexuality nor gender intrinsically cause pain. I know and fully acknowledge that autism is not benign. And I know and fully acknowledge that to imply that it is does a dramatic disservice to those who so desperately need our help and support.

But I also know that for our kids, and even more for the autistic adults who I’ve come to know, autism is just as much a part of who they are and how they experience the world as is their gender, their sexuality or the color of their skin. Even more so because it is the filter through which they experience EVERYTHING.

So how does it feel?

When your mom, your dad, your siblings, the guy with the microphone says, “We will do everything in our power to cure the filter through which you see the world”?

I don’t know the answer, but I can imagine.

I’m not saying that seeking a cure for autism and thereby presenting it as an option is wrong. I don’t know that it is. I’m not sure that it’s not. Frankly, I don’t feel like I’m in any position to make that call.

The truth is, I have no idea what the hell we would do if we were offered a pill tomorrow for our girl. I do know that I want to take away her pain. I do know that I want her life to be better. I do know that I want to banish her crippling anxiety. I do know that I want her path to be far, far easier for her than it is today. And I don’t doubt that if she were more severely affected than she is, I’d want those things even more.

But I don’t know what a cure is. I don’t know what it would mean for her. Honestly, I just can’t wrap my brain around it. I understand (and pine for) the mitigation of her challenges. But I really don’t know what ‘curing her’ would look like. Or what it would leave behind.

Would her incredible memory be cured along with her anxiety? Would her delightfully unique perspective be cured along with her difficulty attending to a task? Would her ability to find beauty in the most mundane things be cured along with her challenges with language? Would she still be able to see music? Imitate accents? What about all of the other gifts that we have yet to discover? Do they get ‘cured’ along with her Sensory Processing Disorder?

This is about Brooke. It’s about empowering her; supporting her; letting her, to whatever degree she is able, lead us. She is nine. She is coming more and more into her own every day. I want her to become involved in all of this. I want her to begin to understand the concept of advocacy so that ultimately she can take the reins if she so chooses. I want her to someday understand the options so that she can tell us what to fight for.

The first step should be simple: bringing her with us. Introducing her to the community of those like her and those who support her. Helping to lead her to her village and encouraging her to find her voice.

But I can’t do that in a venue where people are shouting a rallying cry against such a big part of her identity. How can a nine year-old be expected to understand that it’s not her they’re battling, ‘just’ her autism? Hell, how can a forty year-old? I just can’t do it.

And that scares the hell out of me. Because if I can’t bring her to the place that I’m theoretically going to support her, I really have to wonder if I’m going to the right place.

~

Ed note: Before I wrap this up, I have to say this .. I believe, from the bottom of my heart, that the people I quoted above said what they said from a place of pure, unadulterated love and a burning desire to make the world easier for those on the spectrum to inhabit. Like me, like you, like all of us, they want desperately to make life better – make the future brighter – for our children and for all affected by autism. They want to help and I am grateful beyond measure that they have stepped into the ring to do so. 

*

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Autism – The Effects On Siblings Of Autistic Children

Oftentimes it is true that the child that makes the most noise, gets the most attention.
This is true in a lot of families and moreso in families with children with Autism.
Autistic children also require a lot more time and attention.
In a family with more than one autistic child, it is doubly so. 

This could lead to a greater risk of sibling rivalry. Not for the challenges usually associated with these words but for attention.
With the care that Autistic children need, it would be easy for the unaffected child in the family to get a little lost in the shuffle.

Over time, this could lead to the unaffected child feeling resentful of their Autistic siblings and to begin a little attention getting of their own or behaviors.

In time, the stress involved with this internal family conflict could lead to a rift that may take a lifetime to heal. There are several methods to deal with this potential problem before it gets out of hand.

Each Autistic child is different and each regular child is different and therefore the way that you would handle each child is going to depend on their age and personality.

Time needs to be set aside for the sibling of an Autistic child.

Their “alone” time with their parents.

You may need to hire a caregiver or find a friend or family member to watch over the Autistic child during this time.

The unaffected sibling needs assurance that although their brother or sister gets most of the attention, that they are going to get a share.

It important that you keep your appointment with the child.

The outing doesn’t have to be anything spectacular, just something that the two of you can share. It can be done with one parent at a time or with both.

It is by doing this that you are demonstrating that no matter how busy or hectic things are at home, that he or she is just as important to you.

Another simple way of reassuring the child is to tell them that you love them. Three little words that mean a lot, but that children need to hear.

A special touch or hug that the two of you can share to let them know that you do think about them.

The occasional note under their pillow or in their lunchbox to assure them that even when they are not with you, they are in your thoughts.

These things take but a moment of your time but could mean the world to a child who already feels that they have so little of your time.

Another thing that you can do if your children are of school age is to ensure that the work that they bring home from school is not destroyed by their Autistic sibling.

Unfortunately, due to the behaviours that some children with Autism have, some artwork especially is attractive to them and it may get ruined.

Make sure that you do have a special place that it can be put where it is out of harms reach.

The other thing that you can do is obviously talk to them about Autism in an age appropriate manner. Explain as best you can why their brother or sister does the things that they do.
Encourage them to be open about their feelings.

It is okay to dislike something that the Autistic child does, but that doesn’t mean that they have to dislike the Autistic child.

Encourage participation in the fun things that the family can do as a unit. If the child with Autism is unable to handle outings, have a picnic complete with cloth and picnic basket on the lawn in the backyard.

Be creative.

By showing the sibling of a child with Autism that the family is important and by having them understand that their status in the family unit is by no means undermined by the fact that you need to spend more time with their siblings, the stronger and more secure the child will become.
And the less resentful.

This is extremely important. The sibling of a child with Autism will quite possibly become the decision maker for that Autistic child at some stage in the future.

Donna Mason has been a Registered Nurse for the past 16 years. She is the mother of 6 children, 3 of whom have varying degrees of Autism. For more information on Autism signs and symptoms, and to learn more about this mother’s battle in the fight against this misunderstood condition, visit us on the web at: http://www.autisticadventures.blogspot.com

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http://EzineArticles.com/?Autism—The-Effects-On-Siblings-Of-Autistic-Children&id=1049739

Tagged as: Autistic Children

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Autism in Adults – Three Employment Job Tips

One of the biggest worries when you have autism in adults is what their future is going to be like. Will they be able to work? Hold down a job? While this question is obviously very different for each person, there are some guidelines to help you answer this question.

The level of job will obviously depend on their skill and functioning level, but here are some ideas for autism in adults where the adult is at the lower end of the functioning level. They still have skills to use, but they have many challenges as well.

1. Use their skills and interests

Most adults with autism have skills that can be capitalized on in a job. Do they have a need for order, and like to line things up a lot? Teach them how to file, and see if they can get a part-time job in an office.

Perhaps food is an interest, but you’re not sure what jobs in a restaurant an adult with autism would be capable of. See if they can get a job delivering flyers for a local pizza place — something low stress and with little interaction with other people — or cleaning tables of their favorite eatery. Using interests is always a good way to encourage motivation when working with autism in adults.

2. Take advantage of Vocational Rehabilitation Services

The folks at these centers are usually great at pairing up people with disabilities with jobs. One of the most useful things they can often do is offer the use of a job coach when working with autism in adults.

A job coach will shadow your adult with autism on the job and give them instruction or reassurance when they need it. After the person gets more comfortable and used to the job, the job coach is often faded out — but not always. Sometimes, Vocational Rehabilitation can provide paid internships of a sort. The adult with autism gets experience being trained in some area, and the business contributes part of the pay while Vocational Rehabilitation contributes the rest.

The people at Vocational Rehabilitation have lots of connections with employers all over your area, some that you may not have even heard of. They know which employers are likely to work well with working with autism in adults, and which aren’t. They know who to talk to, and what to ask for. Say, for example, there is a job that you think would fit your adult child with autism really well, except for a few things they aren’t able to do. In a regular job situation, they would just show you the door, but Vocational Rehabilitation can often negotiate for a modified job position that more closely fits the abilities and needs in regard to autism in adults.

There is often a wait list to get services from Vocational Rehabilitation, but it is worth it. Google Vocational Rehabilitation for your local area or look for it in the social services section of your phone book.

3. Know what jobs are a good and bad fit

Take for example working the counter of a fast food restaurant. You have to take orders very rapidly, and be good at operating machinery, like the cash register, at a very fast pace. That would be overwhelming for a lot of adults with autism. Their processing speed is not that fast. Things get backed up in their mind, and it can cause meltdowns, even if the task is simple.

Instead, choose something that is slow-paced or can be done at the person’s own pace. This often works very well when working with autism in adults. Perhaps, something that can be done on the sidelines?

Like to be outdoors? Maybe working as a cart attendant, putting back grocery carts, would work. Others may get bored with the job, but an autistic person’s need for order may make this job appeal to them.

Perhaps putting stock on shelves? If the job is relaxed about the pace, may also appeal to the sense of order and everything in its place which is often a strength of adults with autism.

Think about what attributes are most prominent in autism in adults, then try to think of a job that uses those skills or attributes. But try to avoid anything, again, that is fast paced or requires too much interaction with people — a little is okay, a lot will probably be overwhelming.

If you follow these tips, you will be well on your way to finding jobs that work when working with autism in adults.

And for further tips and techniques to help an adult with autism gain employment and live a happy and fulfilled life, go to the web site http://www.aspergerssociety.org/. There you will be able to sign up for the free Autism Newsletter as well as get additional information to help your loved ones thrive on the autism spectrum.

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