Self-fulfilling Prophecies and Service Providers who take advantage of parents.

It seems so sad to me that there are doctors who, when they diagnose a child with autism, would tell the parents that their child will never speak or be potty trained or live on their own.  It seems sad to me when parents mourn their child's diagnosis as if they were told that their child had died or would die next week.  Autism is not a death sentence!  How many children's parents gave up after being told their child would never say "I love you, Mommy" or be in a normal classroom or any of the other things that other parents take for granted?  How terrible!  It seems like this is a self-fulfilling prophecy.  If you and your child are told that what they have is all that is possible and they just have to deal with it, then isn't it possible that they will never try for better? 

What's worse is that there are doctors who will twist it and make it worse.  "Unless you take your child to a speech therapist, an occupational therapist, a behavioral therapist and take these medications and do chelation therapy and bariatric therapy and eat only certain kinds of food, then your child will be terrible and never talk to you and can't accomplish anything.  Parents spend their entire lives trying to make a better life for their children.  It's what we do.  And when we're faced with a problem we didn't expect then we ask professionals for guidance.  But what's terrible is when these professionals take advantage of us and our desire to do what's best for our children.  We spend thousands or millions of dollars on the various therapies and classes and diets that we're told will help.  But does it really help?

I can't afford all the different therapies that might benefit Aidan.  When he was diagnosed I was a single mom who made under $30k a year.  I didn't understand the GFCF diet, and didn't really see how I could consistently change his diet across all the different caretakers he had (myself, my mom, his babysitter) and even afford to buy the best possible foods for him.  Even though the doctor that diagnosed him said he needed speech therapy, I couldn't get the school system to agree, so I had to work with him on his speech.  I couldn't get them to do occupational therapy either (teaching him basic life skills like potty training or buttoning his pants or throwing and catching a ball) so I had to teach him those things. 

The thing is, I think I've done a pretty good job with him between myself, my family and most recently the amazing people at his school.  He talks more than ever, although you can't always understand him.  He's completely potty trained (which a year and a half ago I worried might not happen) and can button his own pants.  He's learned to ride a bike and throw a ball and play video games and play make believe.  It's all the product of a lot of hard work: his AND mine as well as my parents, Jeremy, our family and friends, and his teachers most especially Miss Annie. 

I guess I just feel like a lot of doctors and service providers and Jenny McCarthy's see parents who are desperate to help their child, and they take advantage of their fear and helplessness.  As parents we're supposed to be able to fix everything and when we can't then we feel like we're letting our children down.  There are people who prey on that and I really think they stink for it.  We're told our child can only be "cured" if we do xyz therapy and abc diet and take them to Dr. So-n-so, so we do what we're told.  Maybe sometimes the therapy is necessary, I don't deny it, but I think that a lot of it is ridiculous and experimental and outlandish and just a way to make money off of desperate people.

I'm done ranting now.

Autism Awareness

April is Autism Awareness Month!  I'm both excited and saddened that we get our own month now.  It's great that we have a chance to educate people and gain support for our cause, but it's sad that Autism Spectrum Disorders are common enough for us to get an entire month dedicated to our children.  In honor of the month I've gathered some information for those of you who don't necessarily know all the in's and out's of autism.  My information comes from the CDC and Google Health, but you should also check out Autism Society of America.  Don't forget to join us Saturday morning for our Autism Walk - or find one in your own hometown if you aren't in Huntsvegas!

And to all of you who have given us so much support since Aidan's diagnosis, thank you!

Prevalence

• It is estimated that between 1 in 80 and 1 in 240 with an average of 1 in 110 children in the United States have an ASD.
• ASDs are reported to occur in all racial, ethnic, and socioeconomic groups, yet are on average 4 to 5 times more likely to occur in boys than in girls.  However, we need more information on some less studied populations and regions around the world.
• If 4 million children are born in the United States every year, approximately 36,500 children will eventually be diagnosed with an ASD.  Assuming the prevalence rate has been constant over the past two decades, we can estimate that about 730,000 individuals between the ages of 0 to 21 have an ASD.
• Studies in Asia, Europe and North America have identified individuals with an ASD with an approximate prevalence of 0.6% to over 1%.

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• Approximately 13% of children have a developmental disability, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism.

Economic Costs

• Recent studies have estimated that the lifetime cost to care for an individual with an ASD is $3.2 million.
• Individuals with an ASD had average medical expenditures that exceeded those without an ASD by $4,110–$6,200 per year. On average, medical expenditures for individuals with an ASD were 4.1–6.2 times greater than for those without an ASD. Differences in median expenditures ranged from $2,240 to $3,360 per year with median expenditures 8.4–9.5 times greater.

Signs of Autism (there were a lot of "a-ha!" moments the first time I read these after Aidan was diagnosed)

Most parents of autistic children suspect that something is wrong by the time the child is 18 months old and seek help by the time the child is age 2. Children with autism typically have difficulties in:

• Pretend play
• Social interactions
• Verbal and nonverbal communication

Some children with autism appear normal before age 1 or 2 and then suddenly "regress" and lose language or social skills they had previously gained. This is called the regressive type of autism.
People with autism may:

• Be overly sensitive in sight, hearing, touch, smell, or taste (for example, they may refuse to wear "itchy" clothes and become distressed if they are forced to wear the clothes)
• Have unusual distress when routines are changed
• Perform repeated body movements
• Show unusual attachments to objects

The symptoms may vary from moderate to severe.
Communication problems may include:

• Cannot start or maintain a social conversation
• Communicates with gestures instead of words
• Develops language slowly or not at all
• Does not adjust gaze to look at objects that others are looking at
• Does not refer to self correctly (for example, says "you want water" when the child means "I want water")
• Does not point to direct others' attention to objects (occurs in the first 14 months of life)
• Repeats words or memorized passages, such as commercials
• Uses nonsense rhyming

Social interaction:

• Does not make friends
• Does not play interactive games
• Is withdrawn
• May not respond to eye contact or smiles, or may avoid eye contact
• May treat others as if they are objects
• Prefers to spend time alone, rather than with others
• Shows a lack of empathy

Response to sensory information:

• Does not startle at loud noises
• Has heightened or low senses of sight, hearing, touch, smell, or taste
• May find normal noises painful and hold hands over ears
• May withdraw from physical contact because it is overstimulating or overwhelming
• Rubs surfaces, mouths or licks objects
• Seems to have a heightened or low response to pain

Play:

• Doesn't imitate the actions of others
• Prefers solitary or ritualistic play
• Shows little pretend or imaginative play

Behaviors:

• "Acts up" with intense tantrums
• Gets stuck on a single topic or task (perseveration)
• Has a short attention span
• Has very narrow interests
• Is overactive or very passive
• Shows aggression to others or self
• Shows a strong need for sameness
• Uses repetitive body movements