April is Autism Awareness Month.
Our Experience on the Autism Spectrum
I will be honest, I have debated about whether or not I would post, and if I would even post at all about this horrendous disorder. There are just so many raw wounds that I am still nursing over the whole autism thing. I am beginning to wonder if I will ever heal. I guess it’s because of this that I will pull myself briefly out of my shell. If I can enlighten just one person…perhaps either spare one person from the pain my family has endured or prevent just one other person from inflicting the same pain on another, it will be worth it.
Our journey on the autism roller-coaster began over 16 years ago — although we didn’t know what we were truly dealing with until many years later.
Audrey was born healthy and beautiful. She was always a “high-needs” baby, requiring very little sleep (and in fact not sleeping AT ALL unless surrounded by white noise). And she cried a lot – “colic”. But she was healthy. And she was the absolute joy of my life; my one true love.
We, as very young, very naive “responsible” parents, took our only child for routine doctor’s visits, and did everything we were told. After all, he, the doctor, was the professional, right?
And consequently we allowed this to happen to her. We allowed our precious child to be injected, directly into her bloodstream with horrid concoctions of viruses, formaldehyde, monkey cells, MERCURY! We allowed this to continue even after she started banging her head and screaming for hours on end. We allowed this to continue even after she lost all speech and began walking on her toes. We allowed this to continue even after she lost eye-contact with us, escalated in violence until she was abusing others and ripping the skin off her own hands with her teeth. We allowed this to continue even after she needed to wear a protective helmet most of the day, after she began having seizures, after she began sniffing things and licking things…etc. We were so naive.
When Audrey first began exhibiting these bizarre symptoms, shortly after her 6 month vaccines, our pediatrician (quack) blew us off. We consulted our family doctor, who became concerned after witnessing Audrey throw a self-abusive tantrum in his office (she was a year and a half old at the time). We were referred to the specialists, and ended up being treated for the next several years by a wonderful pediatric neurologist, who had NO idea what was wrong with Audrey, but medicated her so that she wouldn’t be so self-abusive (our biggest concern) — and who actually listened to us…a first.
In the meantime, we lost friends. We were consistently judged for Audrey’s behavior. We had a difficult time going anywhere as a family due to Audrey’s behavior, and when we did, we’d get the rudest comments! Apparently total strangers thought they had the authority to tell us that our child wasn’t disciplined enough, or that we were just screw-ups. After all, if we were good parents, our child would be well-behaved, right? We were even falsely accused and turned into DCFS more than once. Thankfully most of Audrey’s injuries were witnessed and/or documented by Audrey’s physician…and some even captured on videotape. We had PROOF that Audrey was hurting herself. It’s a major slap in the face to be accused of abusing the one you are doing everything in your power to protect!
Support system? Non-existent. Audrey was one of the first “epidemic children”. Autism was still considered extremely rare at this point. Audrey looked normal. She seemed normal. No one, except for my parents and our neurologist believed us when we said there was something really wrong. Due to the verbal attacks by others, it didn’t take me long to become distrustful; a hermit.
Our second child, “Gator”, was also born perfectly healthy — and was a very pleasant baby; not “high-needs” like his sister. We faithfully gave him his vaccinations as well, until he had a severe allergic reaction to his pertussis vaccine at 6 months. Our doctor (family doctor, not the pediatric quack that had “cared” for Audrey) advised us not to get Gator, nor any future children the pertussis vaccine. It was probably that advice that “saved” them, as the rest of the vaccinated children ended up with only mild forms of autism. But I’m getting ahead of myself here…
Audrey’s condition continued to have ups and downs. Through extensive speech therapy, she eventually regained her speech. She was reading at five, and was quite intelligent, but the violence, behavioral problems and aggression continued. Our neurologist played with dosages and trial medications to try to keep her from hurting herself and others, but we still didn’t know what was wrong — until, at the age of 5 we were referred to a psychologist who specializes in autism.
This is when the bomb was dropped. I had had no idea. This doctor told us all about Audrey by simply observing her. She pointed out autistic behaviors that I thought were just quirks. She was the first person EVER to have said she was sorry for all we had endured for so many years. After that meeting I don’t believe Rob and I said a single word — for the entire hour and a half drive home. We finally had an answer. A devastating answer. Our child had a rare incurable disorder. It was not known what caused it. It was not known how to treat it. It was not known what the prognosis would be. That was it. That’s what we were left with — plus one more person to add to our support system.
What we were told was:
- Autism was extremely rare, occurring in less than one in 10,000 children –
- – and the type Audrey had, “high-functioning autism” was even more rare…almost never seen.
- And that it was almost unheard of for an autistic child to regain speech after losing it (which Audrey had), so there weren’t even textbook cases to compare Audrey to.
The next month Audrey was expelled from her private kindergarten for striking the teacher, so our reluctant homeschool journey began.
The verbal abuse and condemnation from others still continues, over ten years later.
What HAS changed in the last decade?
- Autism is now an epidemic, having gone from 1 in 10,000 children to 1 in 150
- There is now a plethora of information, treatments, support, and recognition, that wasn’t available to us.
I did not know that vaccines were the cause of autism until I began to research and find answers in 1999, around the time we got internet access, so I ignorantly allowed a total of five of my children to be at least partially vaccinated. Four of those five children fall somewhere on the spectrum. Only one was spared.
None of my four UN-vaccinated children have any autistic symptoms. Coincidence? I think not.
An Introduction to my four “Spectrum Children”:
Autism is considered a “spectrum disorder” because the degrees, or severity vary so widely, as do the types of symptoms themselves. We have four different children on “the spectrum”, all with a vastly different set of symptoms, and with varying degrees of severity, although all are considered to be in the “high-functioning” category.
dx high functioning autism, early-onset bipolar disorder
Although very “high-functioning”, Audrey is our child who is the most strongly affected by autism. She is much more socially and behaviorally impaired than her affected siblings.
Audrey was a victim of the system in many ways. Not only was she one of the first “epidemic children”, developing autism at a time when it was still considered very rare, which resulted in a delayed diagnosis and treatment, but she also has juvenile bi-polar disorder. Because this type of bipolar disorder shares some of the same symptoms as autism, it went undiagnosed until she was a teen. The problem? She was treated for years with medications (for autism) that aggravate the mania of bipolar disorder. In other words, while treating one condition, we were making the other one worse.
She is currently “stable”, living with some dear friends of ours (I was no longer able to protect myself or my other children from her during her aggressive outbursts), but will probably never be able to live independently.
dx Asperger’s Syndrome
Extremely high-functioning. The “Asperger’s” label (as opposed to high-functioning autism or PDD) comes from the fact that he never had speech or language disorders.
He taught himself to read at age three, and remains years ahead of grade level. He is difficult to keep intellectually challenged, fixates on things (his obsessions change — he’ll be REALLY “into” something for several months, then suddenly change obsessions to something else for several months). Socially immature, but otherwise very responsible, he is a show-off around peers (wants to be the center of attention), but hesitant to talk to adults. He has a difficult time keeping friends, and tends to be both aggressive (although not violent), with poor impulse control and very sensitive to criticism.
dx PDD, dyslexic, dysgraphic
Very intelligent, but a struggling learner, Anthony was diagnosed when it was discovered that he had profound delays in speech and language. Years of speech therapy, followed by intervention by the Scottish Rite to address his learning disabilities worked miracles. He still has some “classic” autism symptoms, such as preferring to be alone and keep to himself — although he has made great improvements in his social skills over the years. He interacts better with adults than with peers. He has little impulse control and frequently throws tantrums, with aggression (but not uncontrolled violence toward self or others).
Once moderately low-functioning.
Now extremely high-functioning. (If you could say a child was “cured” of autism, it would be “Lefty”. The symptoms are now so mild that only other parents of autistic children will even notice them).
We caught the symptoms of speech and language delay very early with Lefty, and had him in early intervention well before his third birthday. When younger, we feared he would end up more on the “Kanner” end of the spectrum, as he had severe sensory issues (often holding his ears and screaming). He progressed nicely through speech therapy however, and the sensory issues slowly faded away. He has the mildest personality; no aggression or outbursts. Lefty has a genius level IQ. Although his speech and language skills are now right on target, he doesn’t speak unless he has something to say, but he is our “deep thinker” and often comes out with very profound statements. Socially, he prefers to be left alone, but gets along fine with others (peers and adults alike) as long as he doesn’t feel his space has been invaded. He is fixated on animals. They are all he cares about. He carries Audubon guides with him everywhere, drawing, conversing about, and memorizing facts about various animals.
Autism vs. Early Onset (aka Juvenile) Bipolar Disorder
As previously mentioned, the symptoms can overlap, causing great confusion. But the antidepressants often used to treat autism should never be used in bipolar children.
Here is a list of the symptoms of each disorder. The symptoms that Audrey has/had are in blue.
Symptoms of Early Onset Bipolar Disorder
- Separation Anxiety
- Rages & Explosive Temper Tantrums (lasting up to several hours)
- Marked Irritability
- Oppositional Behavior
- Frequent Mood Swings
- Restlessness/ Fidgetiness
- Silliness, Goofiness, Giddiness
- Racing Thoughts
- Aggressive Behavior
- Carbohydrate Cravings
- Risk-Taking Behaviors
- Depressed Mood
- Low Self-Esteem
- Difficulty Getting Up in the Morning
- Social Anxiety
- Oversensitivity to Emotional or Environmental Triggers
- Bed-Wetting (especially in boys)
- Night Terrors
- Rapid or Pressured Speech
- Obsessional Behavior
- Excessive Daydreaming
- Compulsive Behavior
- Motor & Vocal Tics
- Learning Disabilities
- Poor Short-Term Memory
- Lack of Organization
- Fascination with Gore or Morbid Topics
- Manipulative Behavior
- Suicidal Thoughts
- Destruction of Property
- Hallucinations & Delusions
- Migraine Headaches
- Self-Mutilating Behaviors
- Cruelty to Animals
Symptoms of Autism
(note: many of these symptoms refer to Audrey as a younger child. The baffling thing about high-functioning autism, is that over time the child learns to mimic “normal” behavior)
- Lack of pointing to direct others’ attention to objects (occurs in the first 14 months of life)
- Does not adjust gaze to look at objects that others are looking at
- Cannot start or sustain a social conversation
- Develops language slowly or not at all
- Repeats words or memorized passages, such as commercials
- Does not refer to self correctly (for example, says “you want water” when the child means “I want water”)
- Uses nonsense rhyming
- Communicates with gestures instead of words
- Shows a lack of empathy
- Does not make friends
- Is withdrawn
- Prefers to spend time alone, rather than with others
- May not respond to eye contact or smiles
- May actually avoid eye contact
- May treat others as if they are objects
- Does not play interactive games
Response to sensory information:
- Has heightened or low senses of sight, hearing, touch, smell, or taste
- Seems to have a heightened or low response to pain
- May withdraw from physical contact because it is overstimulating or overwhelming
- Does not startle at loud noises
- May find normal noises painful and hold hands over ears
- Rubs surfaces, mouths or licks objects
- Shows little pretend or imaginative play
- Doesn’t imitate the actions of others
- Prefers solitary or ritualistic play
- Has a short attention span
- Uses repetitive body movements
- Shows a strong need for sameness
- “Acts up” with intense tantrums
- Has very narrow interests
- Demonstrates perseveration (gets stuck on a single topic or task)
- Shows aggression to others or self
- Is overactive or very passive
Today – Continued Judgment
“Judge not, and ye shall not be judged:
condemn not, and ye shall not be condemned,
forgive, and ye shall be forgiven.”
As I mentioned previously, I was hesitant to post because it hurts. Although this disorder has now reached epidemic proportions, ignorance still abounds. People still stab at autistic families with their words and actions. That much hasn’t seemed to change in all these years.
My husband’s own family has launched vicious attacks on me through my blog, and on him through email (thus the password-protection), because they don’t understand our need for seeking specialized treatment for Audrey. They are strangers to her. None of his family has seen Audrey more than a handful of times in her almost 17 years of life. None of them have acknowledged her condition (they’re all in the “let’s blame the parents” camp), and yet they spew forth hatred and obscenities because we have had to seek treatment for Audrey outside of the home. Where have they been all these years we’ve been crying out for help? They couldn’t be counted on for support, but they sure are quick to step up to voice their criticism!
And I didn’t attend church for over a year because our pastor (who I love and respect) told Rob that he believes that Audrey is merely expressing rebellion and that if we were more spiritual, she would be fine. That was a dagger through my heart to be condemned by “the church”; to be judged, falsely accused. Where can we turn for prayer and support when we can’t even turn to our brothers and sisters in Christ…to our own church? I can’t tell you how difficult it was to not get bitter — to turn away from church all together. My guard is certainly up. I am wounded, and I have more difficulty with trust than ever. I am now back in church, but the healing will take some time.
What would I have done without my mom, who lent a long-distance ear when I needed it? What would I have done without Christie and Satch or Ms. Kelly and Mr. Bruce, who selflessly gave us a respite and offered us and Audrey unconditional love and support? What happens to those who don’t have people like this for support? [Update: Kelly & Bruce were a farce. You know the expression, "things aren't always what they seem". These "people" merely had the intention of hurting Audrey and our family. You really CAN'T trust anyone, can you?]
Who are we (the collective we, that is…parents of autistic children)? We are parents just like you. We are parents who love our children and want to do whatever is best for them. We try our best. We need to be accepted, not judged. We need for our children to be accepted. They can’t help the way they are.
And don’t you think we know their behavior isn’t great? Don’t you think we’re already embarrassed enough? Uncomfortable in social situations? Fearing the worst? Those derogatory comments only serve to rub salt in our wounds. We’re already hurting. Please don’t kick us when we’re down.
We are the parents of children who have been harmed through no fault of their own. Our children look like your children, but they have neurological impairments. They aren’t bad kids. If they looked different, would you be more understanding? I mean, after all, if they were in a wheelchair would you get angry with them for not walking? If they were obviously blind, would you blame their parents if they tripped over something? And just because a disorder manifests itself as a certain set of undesired behaviors doesn’t mean that there is a problem with our parenting. If an elderly family member of yours was diagnosed with Alzheimer’s and began “acting out”, how would you feel if it was suggested that this disorder was your fault? That if you were spiritually right, or you disciplined Grandma more, she would be just fine? What’s the difference? Both are neurological disorders related to heavy metal toxicity.
Not only are parents of autistic children often ridiculed and treated as outcasts, we are also generally broke. We pay top dollar for health insurance which refuses to pay for our children’s treatment. We are neglected by the medical community. We must either foot the bill for the expensive treatments ourselves, or our children have no hope. We, as parents of autistic children, miss more work, lose jobs (due to time spent caring for our children), have higher divorce rates, and are constantly exhausted – both mentally and physically.
We eventually withdraw. It’s easier than continuing to take the blows.
There NEEDS to be more awareness.
That’s why I’m temporarily unbandaging those wounds and letting down my guard.
Don’t judge us. We’re doing the best we can.
Advocacy – What You Can Do to Spread Awareness
Several communities and organizations are stepping up this month to promote autism awareness. Show your support!
- Walk Now for Autism
Autism Speaks’ Walk Now for Autism is North America’s largest grassroots autism walk program and signature fundraising and awareness event. Click here to find a walk near you, or join a “virtual walk” during the month of April.
- Join The Red Flags of Autism Campaign
Help The Early Intervention Network, in partnership with the D.C. Department of Human Services, raise awareness of the earliest signs of an autism spectrum disorder for national Autism Awareness month in April.
- Bounce for Autism
ASA and Pump It Up, the nation’s largest and fastest-growing franchise of giant indoor inflatable playgrounds for private parties, are pleased to announce the launch of “Bounce for Autism,” a new nationwide, community-based fundraising event that combines family fun with raising awareness and support for autism.
- Samuel’s Kittens
Samuel, a 14-year-old child with Asperger’s is raising money, either through the collection of soda can tabs, or through individual $1 paypal donations, to train service cats to be used in the treatment of autism.
- Tell your story of hope supporting the Million Dollar Puzzle Piece Challenge.
The Million Dollar Puzzle is an initiative to fund research through the Autism Research Institute, and keep Dr. Rimland’s visionary work alive.
- Blogging for Autism Awareness
Are you a blogger? Share a personal story, a found news link, an interesting subject-related video on YouTube, or a photo – anything you can to help inform and educate others about autism.
- Autism Speaks & Toys R Us
Toys R Us, in conjunction with the Toys R Us Children’s Fund, recently launched its second annual fundraising campaign to benefit Autism Speaks. They are collecting cash donations online through May 2.
- Autism Speaks & Chevrolet – Virtual Test Drive
Autism Speaks and Chevrolet have partnered for a month-long promotion to help generate up to $1 million for the non-profit organization. During April, people who visit www.autismspeaks.org can click on the “Help Chevy Help Autism” icon and take a free virtual test drive of the Chevy Malibu. Chevrolet will increase its $500,000 donation for every virtual test drive taken. Those who participate in the virtual test drive will be offered a free 30-day online trial of XM Satellite Radio.
During April 6-26 at 800 TJ Maxx stores nationwide, customers will be invited to purchase an Autism Speaks puzzle piece at checkout for a donation of $1. No purchase is necessary to make a donation, and all proceeds will benefit Autism Speaks.
- Barnes & Noble
Five hundred Barnes & Noble stores across the country will partner with Autism Speaks to host special Storytimes in April as part of Autism Awareness Month. Barnes & Noble’s national program, in partnership with Autism Speaks, is designed to raise awareness and foster understanding about autism.
- The Bachman Company
The Bachman Company recently launched its “edible awareness” campaign with puzzle piece-shaped pretzels. The Puzzle Pretzel is now available in grocery stores in the Northeast and online at http://www.bachmanpretzels.com/. Bachman will donate five percent of the proceeds from the sale of the Puzzle Pretzels to Autism Speaks.
- Build-a-Bear Workshop
Build-a-Bear Workshop and Autism Speaks are teaming up for the fourth year to raise funds for autism research and awareness. In April your $1 donation for the purchase of a purple satin heart will be distributed through the Build-A-Bear Workshop Foundation to Autism Speaks. Stores will also offer customers printed information about autism.