A wonderful explanation of Autism

A mother of a 4th grader with Autism wrote an amazing post about how she explained her son's autism to his classmates. There are many adults that can learn from it too.

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April is Autism Awareness Month

April is Autism Awareness month and if you are reading our blog you probably know that our son has Autism. It has been a while since we have posted an update on how he is doing. He has been going to school for 9 months now. He goes 5 days a week for 6 hours a day. His entire time at school he spends with one of his three exceptional therapists--Melanie, Cassie, and Cory.

We have seen many improvements over the last nine months. He can understand and follow simple directions like sit down please, take your shoes off, or let's take a shower. He asks for things like "eat please" or "drink please". He makes a great deal of eye contact now when we are talking to him and will look at us when we call his name (most of the time). These things may sound insignificant for a 3 1/2 year old to do, but they are huge for us. Simple things like him putting 3 words together, "more drink please" bring us great joy, the same joy that parents of typical kids (thats the term we use in the Autism community) experience when their children ride a bike or do something else for the first time. It's all relative and we are beginning to understand and accept this.

We tend to sometimes get focused on "what Fisher can or can't do" as compared to typical kids. But have realized the joy that we find in "what Fisher does" with no comparisons to others. He loves to eat popcorn(and not share it), he loves to give kisses to Mom and Dad when we ask for them, he loves dinosaurs, horses, snakes, trains, hot wheels and most toy animals. He has favorite tv shows--the backyardigans, dinosaur planet, and a really cheap horse DVD. He knows where the toy aisles are in certain stores. He loves to ride in the car. He loves to cuddle with mom. He loves to play in the backyard. He has the climbing ability, balance, and fearlessness of a mountain goat. He is strong as an Ox. He can read words like elephant, camel, rhinocerous, baby, and more.

Some people with ASD like Temple Grandin describe their brains as thinking in pictures instead of words. I think this is how Fisher thinks, it's almost as if a picture show is playing in his head because of the stimuli around him and sometimes we understand what that is and sometimes we don't. Sometimes he let's us inside his head, but mostly he doesn't (not in ways we understand).

We tend to answer the question, "How's Fisher doing?" with a "good". And he is doing good. The joy we feel because of him is the same as parents of typical children feel. But we rarely bring up the challenges we are faced with everyday or the things Fisher doesn't do. He's not potty trained, not even close. He doesn't play with others, rarely even his parents. He doesn't count to ten or say his ABC's. He doesn't sleep in his room. He rarely sleeps through the night. We can't let him out of our sight for any amount of time. He hits. He bites. He pinches. His mom can't do anything alone while he is home. His dad wishes he would bother him like that. He doesn't understand directions unless we (and his therapists) have worked on them over and over, sometimes for months.

We don't tell many people about how hard it actually is, or tell them the whole story. We don't expect people to fully understand what we go through everyday. We are thankful for our friends and family.

So don't be afraid to ask either of us questions about Fisher. If you want to know more than "how he is doing", then ask us specifically. If you want to educate yourself or others about Autism I will list some links that we have found helpful.

A ten minute talk from someone with ASD

Autism Society of America

A wonderful book about a family with an Autistic son

A short video on the signs of Autism

Great weekly articles from a mother with a son with Autism

A blog by the Author of the above mentioned book

There are always more resources, some good, some bad, but these are some of the ones we find useful.

Thanks for taking the time to read this. Feel free to share it. If you take one thing away from this, I would say take this...next time you are out in public and you see a parent struggling with a child you think is behaving badly or has a lack of discipline, don't be so quick to judge the child or the parents. Remember, 1 in 110 children are now born with Autism, and it affects every one of them differently.

Update on Fisher

So it has been awhile since we posted about Fisher's Autism. He started school on July 1st. He goes 4 days a week. The school is a Montessori based preschool for kids from about 2-6 years old. It is made up of about 70% typical kids and the rest are kids with many different kinds of disablilities. Fisher days consist of Emily dropping him off, at this point he meets up with his IBI (Intensive Behavorial Intervention) Therapist Melanie. She spends the entire day with him, and she is wonderful. He joins the class for snack, lunch, outside play, and circle time as he can behave properly. If he has trouble following the rules of the class Melanie takes him to his own therapy room where she can work with him one on one.

In the short time he has been at school he is working on staying seated while he eats and drinks, cleaning up after an activity, following directions, transitioning between activities, playing with his peers, and some sign language among many other challenges that come up from moment to moment. He also meets with a speech therapist and an occupational therapist on a weekly basis.

The other day when Emily went to pick Fisher up he was sitting at a picnic table with a bunch of other kids eating pretzels and drinking water. This may not sound like much, but it is a big deal for us. Fisher also told me "put me down" when I picked him up the other day. It showed that he is learning to use language to express his needs rather than physical actions.

We have also seen many small improvements in him following directions. We just take it one day at a time and also are very thankful for the support we are getting from our family and friends.

Swimming at the Johnson's house. (one of my favorite activities)

This was Fisher leaving for his first day of school.

On a serious note...

We would like to take this opportunity to talk about something that has affected our family very much over the past year or so.

Our son, Fisher has recently been diagnosed with Autism Spectrum Disorder. Yes, this means he has Autism. There are many different ways and degrees to which Autism affects children. It seems at this point that every child affected is differently and to different degrees. We have known in our hearts for a while that Fisher has it, but we haven’t been ready to share it with the world, or even fully admit it to ourselves.

We have been very fortunate to have been put in contact with wonderful people through the Idaho Infant Toddler program and now with the Idaho Dept of Health and Welfare. So far the people we have dealt with have been extremely helpful and sensitive to our needs. There are many resources out there on the internet that give useful information and I will put some links up at the bottom of this post. We have struggled over letting others know what is going on with Fisher, sometimes I think it is out of fear about how people will interact with us or him, or if people will treat us differently. But now it is a relief to let others know what we are going through. We don’t want people to be fearful of sharing the joys they experience with their children, or the new thing that their child did.

Fisher does exciting and new things every day, they may not be the same things as another child the same age does, but we still like to share experiences with other parents. We don’t want special treatment for Fisher, or for people to feel uncomfortable around him. We just ask for a little understanding when he doesn’t respond to situations as other children would. Our love for him and our experiences as parents are not lessened by his challenges, so we do not seek sympathy…just a little understanding. If you are wondering how he is doing…just ask. If you are wondering how we are doing…just ask.

We have been told by many of the professionals that we have met with that if things go well with developmental therapies and lots of hard work that Fisher may be able to function alongside other children his same age in school with little or no notice from others. That is a long ways away, with a lot of work between now and then. We are optimistic about the future. We are not defined by the challenges in our lives; we are defined by how we meet them.

Here are some facts about autism:
· 1 in every 150 children is diagnosed with autism

· Autism is 4 times more likely in boys

· Autism is the fastest growing developmental disability

· There is no cure or medical detection for autism

· Autism is a spectrum disorder. There are 5 developmental disorders that make up the Autism Spectrum -Autism, Asperger's & Rett's Syndromes Childhood Disintegrative Disorder, and PDD/NOS

· Autism is more common than pediatric cancer, diabetes, Down’s syndrome and AIDS combined

· Autism is the only developmental disorder in which IQ scores can be improved through intervention

· The national cost for autism is $9 billion. With the rising numbers of diagnosis, the cost in 10 years will be $200 -$400 billion

· Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention Parents are the first people to notice autistic behaviors in their children. If a parent thinks there maybe something wrong, they should seek out testing.

· Signs of autism: Lack of or delay in spoken language, repetitive use of language and/or motor mannerisms (e.g., hand-flapping, twirling objects)

· Signs of autism: Little or no eye contact, lack of interest in peer relationships

· Signs of autism: Lack of spontaneous or make-believe play, persistent fixation on parts of objects.

· The testing for autism is ONLY deficiency based, and does not account for a child’s inability to communicate verbally to measure IQ

· There is no known cause or trigger for autism

· Characteristics of autism: Insistence on sameness; resistance to change, Difficulty in expressing needs, and using gestures or pointing instead of words.

· Characteristics of autism: Repeating words or phrases in place of normal, responsive language, Laughing (and/or crying) for no apparent reason; showing distress for reasons not apparent to others.

· Characteristics of autism: Preference to being alone; aloof manner, Tantrums, Difficulty in mixing with others, Not wanting to cuddle or be cuddled, Little or no eye contact.

· Characteristics of autism: Unresponsive to normal teaching methods, Sustained odd play, Spinning objects, Obsessive attachment to objects, Apparent over-sensitivity or under-sensitivity to pain, No real fears of danger.

· Characteristics of autism: Noticeable physical over-activity or extreme under­activity, Uneven gross/fine motor skills, Non-responsive to verbal cues; acts as if deaf, although hearing tests in normal range

· Autism receives less than 5% of the research funding of most of the more prevalent childhood disorders

· Autism is diagnosed in all standings of socioeconomics, race and location; meaning no one is immune

· Autism is a condition whose treatments are specifically excluded by some insurance companies Inclusive classrooms work best for children with autism. Inclusion works when teachers believe all children can learn

· Because some people with autism cannot use words, they use behavior to communicate

· Embrace differences, embrace autism

· People with autism do not lie, do not judge, do not play mind games; Maybe we can all learn something from them

· Discipline does NOT cure autism

· When a child has autism, questions are appreciated, parenting advice is not

· Just because a person with autism cannot speak, does not mean they have nothing to say

· Normal -It’s just a dial on the washing machine!



Links:

http://www.autism.org/

http://www.autismspeaks.org/

http://www.panhandleautism.org/




We decided to post this on our blog, because it seemed overwhelming to explain the situation from the beginning to all of those people who are interested, over and over again. This now gives everyone a starting point to continue the conversation. We will continue to post updates about how are family is doing on our blog.