Do people with autism have feelings? sometimes it’s hard to tell, but…

I bet you’ve noticed that people with autism don’t display their feelings too easily. I used to cry at the front door when Jonny went off to school and didn’t even turn back to say goodbye to me as he walked out the door to school. In fact I didn’t even think he had feelings for the first 5 years of his life.

At six, he rode his bike across a busy highway without stopping to see if any cars were coming. I got very mad at him yelling “Jonathan, what do you think you are doing? You could have been killed.”  He said “sorry, mom”. I snapped back in my anger saying “sorry doesn’t cut it”.

He began crying which shocked me.  He said “you hurt my feelings.”  Up until that time, he didn’t display his feelings in the traditional sense, so I didn’t know how to perceive his feelings.  Sometimes it appeared he didn’t even have feelings though I knew he did.

After one of my readers read this recently, she wrote this back to me:

Thank you and this is so true my girl is now 12 and shows her feelings but not towards her baby sister who is now 2yrs, she don’t really even like to be around her and when she does which is not much at all it surprises me that Skye daughter with Autism will even play with her ball i’m sure these are signs of progress.

Biomedical conference for autism! Practitioners, educators and caregivers welcome!

This conference is for parents, caregivers, educators, and practioners. It features some of the world’s foremost autism experts speaking on a wide range of topics featuring the latest research on the treatment of Autism Spectrum Disorders. It is an excellent opportunity for those seeking evidence to support the use of various biomedical treatment options. It will provide a comprehensive overview of latest biomedical breakthroughs and research in the treatment for Autism Spectrum Disorders. Discussions will include the role of nutritional deficiencies and supplements, special dietary interventions, food allergies, toxic chemicals, heavy metal toxins, enzyme deficiencies, inborn errors of metabolism, immune deficiencies, the role of microorganisms in the gastrointestinal tract, and much more. This will be one of the most comprehensive autism conferences in Canada in 2010!

Practitioner Training Seminar:
Practical Skills for the Medical Professional
A two day practitioner training seminar will be held March 27 – 28, 2010. The training is for licensed practitioners only and is designed for practitioners who have a targeted interest in biomedical treatment options for children on the autism spectrum. There will be an opportunity to review treatment approaches for children diagnosed with autism spectrum disorders, with a focus on the metabolic, gastrointestinal, and immunological function.

Hope, Healing and Possibilities

Update on biomedical conference 2010

This conference is for parents, caregivers, educators, and practioners. It features some of the world’s foremost autism experts speaking on a wide range of topics featuring the latest research on the treatment of Autism Spectrum Disorders. It is an excellent opportunity for those seeking evidence to support the use of various biomedical treatment options. It will provide a comprehensive overview of latest biomedical breakthroughs and research in the treatment for Autism Spectrum Disorders. Discussions will include the role of nutritional deficiencies and supplements, special dietary interventions, food allergies, toxic chemicals, heavy metal toxins, enzyme deficiencies, inborn errors of metabolism, immune deficiencies, the role of microorganisms in the gastrointestinal tract, and much more. This will be one of the most comprehensive autism conferences in Canada in 2010!

The stories keep coming…

Dear Karen,

Thank you very much for sharing your story with us, it sounds almost exactly how we found out about my brother. Except for, it took at least 4/5 doctors to figure out what’s wrong with him. After he suddenly stopped talking my parents thought that he had developed a hearing problem, that maybe there’s something wrong with his tongue. Autism is still very new to our place and only those who have autistic children or siblings know what it’s really called.

My parents have always kept contact with different families.

My brother would be so much happier if people here could understand, but unfortunately as he is growing up, people seem to run away from him more and more. What hurts me the most is how lonely he is. My mom recently resigned, with me at school or out and Dad working he only gets a handful of time with us.

I don’t have any other brother or sister so I really don’t know how it’s like to have a normal brother, but I’m happy with mine. Although, I’d also like to know how to be normal myself, society here is very ignorant, it forced us to be almost ‘house arrested’. We can’t have a family time out anymore because my brother has violent tantrum whenever he goes out, there’s no one here who could tell us what to do. Someone always has to be with him, in case he keeps the water tap on. He’s terrified easily.

My parents have been working very hard to find out how to teach him to be self sufficient, we are progressing, yes; but not enough to lead a proper life together. Somehow my brother scares most of our relatives and friends so it’s really lonely at our home most of the time.

Prithul(my brother, the name means – ‘great’) is very fond of my boyfriend. He’s a person I’ve seen in a long time who really does play around with Prithul.

Sometimes I think, my brother is like a belt to us. If it wasn’t for him I wouldn’t be slightest responsible seeing how reckless I already am.

But there’s someone else in my family who’s also sick. My mother suffers Paranoid Schizophrenia.  She takes her medication but sometimes she stops it. Home turns into a real hell when mom becomes violent, Prithul starts to have tantrums because of the unstable environment. My dad is 54 and has diabetes, eye problem which can’t be treated, high blood pressure and  the company he works on is breaking down, nobody will give him any job because he lost his eyes and age. Can you imagine what he goes through when these happens. My uncle helps us a lot.

I know it’s suppose to be about autism, I love my brother, but because of the harsh mentality of other people our lives have been altered.

But I’m glad it all happened. If it didn’t then I wouldn’t be where I’m now, harshness forced me to understand thing’s that might have taken a few more years to work out.

Prithul’s sleeping pattern keeps changing. He can potty in the commode now but can’t wash yet. We are working on that.

Say hello to your son from me and my brother. Have a nice day….

More stories from our readers…

I was talking to a friend today and some things came to mind.  Many people want to know why I fight with the school district and the State.  I have earned quite a reputation as a crazy mom.  There are many people that are happy with the education that their children are getting and wonder why I am not.  Well, let me explain it to you.

I have known that my son has autism since he was three years old.  I lived in a very small town in Illinois with the population of 1,200.  I had twin daughters that were 5 years old and were in all day kindergarten.  The town was having testing for children 3-5 years of age.  I thought it was to see where they were academically and what they needed to work on prior to starting kindergarten.  My son was three years old and the only child that I had home during the day.  I signed him up for the testing and took him up to the school.  I wasn’t sure if he would go through it because he was a screamer.  I don’t mean that he screamed every once in awhile.  I mean that he screamed 24/7.  For the first two and a half years of his life he would sleep for 30 minutes and scream for the next two hours.  This went on all of the time.  He didn’t speak or even make noises.  He never said MaMa or DaDa.  He just screamed.  When you tried to hold him he would arch his back.  He never reached for me and even really acknowledged me.  He just screamed.  I had asked the pediatrician and he said boys don’t talk as early as girls and some babies cry more than others.  So, they took him into another room for awhile and when they brought him back they said that if they felt that he needed to start Early Childhood they would call me within a week.  Within three days I received a phone call.  They weren’t sure what his issues were, but the district felt that he “wasn’t right” and put him into school.  They didn’t know what the problem was, but they were determined to find out and give the best that they had.

This was a town of 1,200 people.  Their resources were very limited.  I didn’t even know that my child had an issue.  I was blind.  Something that would affect my judgment for the next ten years.
These wonderful people put my son into a classroom of six students and two teachers.  They gave him OT and ST.  They worked on his social skills.  They worked on any issue that came up.  Not because they had to.  He didn’t even have an IEP yet.  They did it because they saw a child that needed help to be successful in life.  They treated him like a human being that needed guidance and support.  He was not another drain on their budget.  They had practically no budget.  It didn’t matter.  HE mattered.

When he was four they did some educational evaluations.  This was before the internet.  This was before anyone knew anything about autism.  They said that his tests came back with some very odd results.  They said that he was way at one end of the curve on some things and at the other end of the curve on other things.  There was nothing in the middle.  They said that he didn’t make eye contact.  I had never noticed this.  They said that he didn’t play with other children.  That he would only parallel play.  They said that he used dramatic and constructive play, but not interactive play.  He could name colors, count up to 12, and recognized numbers.  He could sequence objects by size and understood concept of big.  He needed a routine and things had to always be the same and if it was not it would throw him off.  He would flap his arms and rock when he became excited.  He couldn’t follow simple instructions.  He displayed a short attention span.  He was very interested in Thomas the Tank Engine and could name every engine, their color, and their number.  He could tell the name of a Disney VHS tape just by the font.   You could lay out the movies, without the box, and he could name the movie just because of the font.  I never even noticed that each movie had a different font.  They took all of this information and started reading.  They found that he exhibited many language, behavior, and socialization characteristics that may indicate a pervasive developmental disorder.  They included:  late talking, limited variety of responses, non-use of greetings, lack of conversation, lack of playing with others, limited eye contact, perseverative language, echolalic language, arm flapping, strange attachment to objects, and an ability to repeat video scripts verbatim.

When my son was five we moved back to Kansas City.  This is where my husband and I were raised.  We carefully called and interviewed every school district on both sides of the state line.  We wanted to make sure that Jake would get the best that Kansas City had to offer.
After several phone calls and interviews we chose Lee’s Summit.  I went and told the personnel here that the district in Illinois felt that Jake wasn’t ready for regular kindergarten.  They felt that he needed 1 on 1 or small group instruction for at least one more year.  It stated it in his IEP.  Lee’s Summit assured me that they were a big district that could handle all of his needs and issues and that the best thing for Jake was going to kindergarten.  Once again, I was blind.
Jake went to Prairie View from kindergarten through sixth grade.  He had some amazing teachers there.  They were kind, supportive, and made accommodations that his IEP didn’t call for.  We had no issues there.  I truly felt that we had picked the best school district that we could have.  I volunteered in his classroom every week for at least 2-3 hours.  I helped with the school carnival.  I helped with health fair.  I wrote to the Kansas City Star and told them what an amazing job they were doing with my son.

I didn’t know much about autism and I felt like the district was doing all that Jake needed.  Little did I know that when he got into high school my only hope for him would be living in a group home.  That is where we are now.  On his IEP the district has decided that his transition program would be to live semi-independently.

WHY?  Because the district never addressed his autism.  They didn’t address his dysgraphia.  They didn’t address his social issues.  They didn’t address his written language issues.  Why didn’t they?  I didn’t demand it.  In seventh grade the only goal he had on his IEP was to be able to write a paragraph.  This is a child with autism, dysgraphia, and a written language deficit.
I thought that you had to believe in the experts and trust them.  That blindness has caused the loss of my son’s independence.  If I had educated myself and fought for him, he would have a different future.  His future was stolen and I stood back and let it happen.
I gave the school district a five year old with potential.  They have given back a child that will never leave home.  I let them do this to my child.  My silence and acceptance granted them permission to destroy my son’s future.  He could have been an independent taxpaying citizen.  Now he will be a burden on tax payers.  Not to worry, Lee’s Summit.  You have no group homes here, so he won’t burden your city.

Your children still have a chance.  Your children still have a future.  I pray that none of you ever have to read the following and have it apply to your child.  But, if you continue to sit back and do nothing, you will face the same situation that I face today.  I let the State of Missouri and the Lee’s Summit School District steal my son’s future.  I will live with that until the day that I die because Jake will be living with me until the day I die.  What will happen to him after that, only God knows.  I pray that you never have to go to bed at night and think about that.

Sharing stories about their children!

People all over the world are sharing their stories! I love it!  Here is one from Tina Betler, just as she wrote it:

“Dear Karen,

I am glad you’re keeping up with everyone about your son. I
have to tell you, I was really kind of happy to find out that my first
son, Spencer, was diagnosed with PDD-NOS at the age of 18 months.
Although, I knew he had autistic tendencies when he was 8 months and
mentioned it to his OT when he was 10 months. I had taken Spencer to a
Developmental Pediatric when he was 10 months and they said he was
normal, he was a typical baby. Mind you, I already had Early
Intervention with the help of his regular pediatrician and my
pressuring. I had my Service Coordinator attend all of our appointments
with the Developmental Pediatric. So he was getting the help while all
of this was going on anyway.
I took him back 6 months later to the same doctor. Again,
there was no diagnosis given. Unhappy with their results, I wanted a
second opinion, of course. This one was without the coordinator. But I
had a gut feeling that all was going to go well. I had heard many people
talk down about this particular Developmental Ped. because of her
‘personality’ and others praise her. My thoughts were not how she
presented herself, but rather how she handled the testing she would
administer. We were in the room not 5 minutes and she said that I was
right about his condition! She noted it in her report too. We were there
for about a half hour when she diagnosed Spencer with PDD-NOS. I cried.
Not because of the diagnosis. It was because she understood my
frustration and my extreme persistence. I recommend her to many other
families!!
I didn’t get to see her for my second son. That was a bummer!
But I did get to meet a new doctor for Eric. He had two degrees.
Pediatric Neurologist and Developmental Pediatrician. He was really good
also. We had a GREAT conversation concerning Autism and Angelman’s
Syndrome, and the similarities and differences of the two. I also
brought up the idea of chromosomes and genes. To my surprise, the doctor
went along with it. He said he liked the way I was thinking. He was
quite amazed by my understanding of the medical field and my
enthusiasm.  I was skeptical that Eric had the same condition as
Spencer. They were totally different! After that, Eric went back about a
month later. I agreed with his diagnosis, PDD-NOS, Microcephaly, Static
Encephalopathy, and Hypotonia. Both of my boys received the maximum of
therapies: Speech, Occupational, Physical, and Special Education through
Early Intervention and Preschool.
Spencer’s diagnosis changed to Asperger’s Syndrome and Eric’s
is the same. But! They are doing extremely well in school and the
community. They get services through Lexington Family Services. Not just
Respite, Slumber Camp, Support Groups and celebrations. They make
friends all by themselves.
We  struggle through some days still.  Sleeping through the
night, homework time, emotional breakdowns, bath time, game time,  being
nice to pets ( getting better), sibling rivalry ( who gets most of Moms
attention!), picking up after themselves, hitting/slapping to get a
reaction (not to be mean, but to initiate play).

P.S.

I am also on the Family Support Council and Autism Support Group, and am
trying to come up with some New ideas for new services. We’ve had a few
turned down. Have you used services  for Jonny that he really enjoyed
and aren’t a “typical” service? Something like: learning how to play an
instrument/s, cooking, dancing,  writing (books or plays),  One on One
Behavioral help?
We have Homework Club which was one of the best! Hourly Respite, After
School Respite, Autism Support Group, Parent Roundtable Support Group,
Strengthening Families (put on by another agency in our building), Girls
Cooking Class, and Music Therapy.”

Thank you Tina for sharing your story!

hyperbaric therapy in the real world…

I have talked with several people who have had Hyperbaric Oxygen Therapy (HBOT), or know of others who have had this type of therapy. This type of therapy  has been known to show promising results in the treatment of autism.  HBOT involves the breathing of pure oxygen in a hyperbaric chamber – pressurized above one atmosphere absolute (ATA).  Originally utilized to treat a life-threatening condition known as the ‘bends’, in divers, its therapeutic use has expanded to include carbon monoxide poisoning, gangrene, osteomyelitis, and, more recently, autism. It was also recommended for my late brother-in-law, Larry, but the doctors “poo-pood” it claiming that it wouldn’t have helped him.  I tend to disagree with the doctors, and wish we had tried it on him.

It is medical fact that HBOT enhances blood flow to the brain, reduces inflammation and oxidative stress, and mobilizes stem cells from the bone marrow.  Deficits in all of these have been implicated in the development of autism.

Have any of my readers tried hyperbaric therapy with their children or know of others who have? I would be very interested in getting your feedback about how this has worked for people in your life. So, the symptom improvements you would look for would be better appetite, language, eye contact, better intestinal health, and so on.

Let me know out there what you all are thinking!

Neuroinflammation & Oxidative Stress: The ABC’s of Testing & Treatment

New research is focused on how oxidative stress and inflammation impacts the nervous system, resulting in some of the symptoms of Autism Spectrum Disorders. This lecture reviews research about the mechanisms of oxidative stress, how it may affect the human body, and testing that is currently available to assess it in each patient. Treatment using supplements, herbal and homeopathic medicines will be reviewed.

The Use of Hyperbaric Oxygen Therapy for Children with Autism

Hyperbaric Oxygen Therapy (HBOT) has shown promising results in the treatment of autism.  HBOT involves the breathing of pure oxygen in a hyperbaric chamber – pressurized above one atmosphere absolute (ATA).  Originally utilized to treat a life-threatening condition known as the ‘bends’, in divers, its therapeutic use has expanded to include carbon monoxide poisoning, gangrene, osteomyelitis, and, more recently, autism.

HBOT enhances blood flow to the brain, reduces inflammation and oxidative stress, and mobilizes stem cells from the bone marrow.  Deficits in all of these have been implicated in the development of autism.

A typical treatment protocol for autism consists of breathing pure oxygen for sixty minutes at 1.3 to 1.5 ATA, which corresponds to a depth of ten to seventeen feet of seawater (FSW).

A substantial majority of patients experience benefits with HBOT.   These include improvements in language, eye contact, socialization, appetite and digestion.  It can also reduce the intestinal inflammation associated with bacteria, fungus and parasites.

Lori Lite Focuses on Self Esteem and Stress Reducing for Kids!

January 5, 2010 Atlanta, GA. Children’s author and entrepreneur Lori Lite returns to the ABC’s “Shark Tank” reality series Friday, Jan. 8, marking her first appearance on the show since August 2009. “Shark” real estate mogul Barbara Corcoran offered a sharing interest in Lite’s up-and-coming company Stress Free Kids. This remarkable series of books and are all about helping to reduce children’s stress and anxiety.
Stress Free Kids and Autism Today help those with Autism and Asperger Spectrum Disorder become active participants in managing their own stress, anxiety and anger. Karen Simmons, CEO, Founder of Autism Today is a leader in providing the most efficient and effective information available to help families and professionals living with Autism.
Since that recent Shark Tank episode, Borders stores is now carrying  Lite’s books nationwide, including such titles as “Angry Octopus”, a stress-management book and “Affirmation Weaver”, a self esteem-building book.
“Borders is the first retail chain to give me nationwide placement in their stores. I love that Borders believes in me and my books, which truly do help children live stress-free lives”, Lori says.
A relaxed crowd of children expressed positive affirmations, as Lite read to them from “Affirmation Weaver”, at a recent Borders event in Long Beach, California. “It was thrilling to see a large group of children repeating positive statements,” says Lite.
Borders features this special series from Stress Free Kids http://autismtoday.com/indigooceandreams.html.
For more information visit your favorite Borders locations featuring Stress Free Kids. To arrange an interview with Lori Lite, please contact Rick Lite at (800) 841-4204.
About Autism Today:
Autism Today is dedicated to helping those on the autism spectrum realize their goals and dreams while supporting parents and professionals in the process. Karen Simmons feels that, “helping and supporting parents, professionals and their children to manage stress is one of the best sway we can empower individuals on the autism spectrum to achieve their personal best.”
Karen’s ambition is to eliminate obstacles while enhancing strengths that can be present when dealing with special needs issues by providing the most efficient and effective information access tool available today.  Her vision is to shine light on special needs by empowering individuals on the spectrum to become their personal best. Autism Today’s renowned conference series returns this Spring with the Edmonton Autism Biomedical Conference, join us for three days of education, networking and excitement – www.autismbiomedical.com
Follow Karen Simmons, CEO of Autism Today

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1 in
45

Diagnosed with Autism

Over
100

Autism Diagnosis a Day

Costs
238

Billion per Year

Boys are
4

Times More at Risk