Friday, April 29, 2011

1 in 70 *Autism Awareness Month*


The month of April is Autism Awareness Month and I thought I'd be remiss not to do a post on autism (and Asperger Syndrome).....It is part of our lives and it affects not only the child who has it, but the entire family...You probably even know a child who is on the spectrum whether they are diagnosed or not, b/c it is often misdiagnosed.

Autism is a spectrum...The definition according to dictionary.com is

au·tism

[aw-tiz-uhm] Show IPA
–noun
1.
Psychiatry . a pervasive developmental disorder of children, characterized by impaired communication, excessive rigidity, and emotional detachment.
2.
a tendency to view life in terms of one's own needs and desires.

When I was growing up, I had only encountered one child with autism. That child had multiple impairments and didn't have any speech (except screaming). He was on the far left of the spectrum and was low functioning. He stemmed and flapped his hands and had many symptoms of classical autism.

Fast forward to adulthood....I had no awareness that autism was a spectrum and I considered myself educated. After all, I had spent many year teaching kids gymnastics, I babysat,  and was now a certified teacher. I had read all the parenting books I could get my hands on and took parenting classes galore to prepare for my firstborn child. I read to him in the womb. I LOVED this little baby boy growing inside me. He was a big baby (9lbs. 1 oz)...Who knew he'd be such a skinny kid afterward? His delivery was pretty uneventful except for the fact that I was not able to walk right for a long time . He developed typically. I noticed early on that he didn't like loud sounds or would cry when the sun shined on him....He nursed and spit up a lot, but those things seemed like typical baby things. At about 6 months, he'd nurse and slide down off my lap onto the floor. He weaned at six months. I noticed him preferring to be on the floor than to be held. He was my first though so I thought alone time was great.....As he grew, he had repetitive interests (memorized upper and lower case alphabet letters by the time he was about two. He would bring refrigerator magnets to me and say, "Whas that?". I'd tell him the letter and he'd go get another one.) He moved from that to Teletubbies, Thomas the Train, and I don't know what else....It was an intense interest and he could tell me all about it... When people would come to visit, he'd be all excited and then run to his room. He seemed apprehensive about the hugs and physical contact and all that.....I was perplexed, but still didn't think much of it. He began tantruming and separation anxiety between 13-18 months and it was like nothing I had ever seen. I tried all the strategies but them didn't work. I ate a lot of humble pie during this time and I would cry b/c I didn't know how to make it better. Well meaning people would tell me, "He'll stop after a few minutes" when I'd leave him at Mothers-Day-Out. Only....he didn't stop. I'd wait down the hall and he'd still be crying. I thought to myself, well all the other parents are leaving their kids so he'll eventually acclimate and do what they're doing....I still have a hard time thinking about this to this day. There are many other things/behaviors that led us to the "Regional Intervention Program" in our state. I took him there twice a week and it's a program that focuses on using/implementing behavioral strategies. As time passed, I was learning all types of strategies I was implementing and I loved my case worker, but Spencer's behavior wasn't improving. He was still impulsive and aggressive and afterward would be truly sorry. 

We finally met with a psychiatrist that R.I.P. had a relationship with. He was a grandfather figure to me and he eventually diagnosed Spencer at four years old with having Asperger Syndrome...Spencer always spoke on target so any other testing we had through the school system did not detect an issue....but as a mother's heart knows....I knew there was something going on.

Sometimes when Spencer would get excited, he would spin around or bang his head into the pillows...He walked on tiptoes (for the sensory input) He wanted routine and struggled with transitions (moving from one activity to the other). These things often led to severe meltdowns. He still didn't like bright lights, loud sounds, crowded places, loud music, tags in clothing....etc.

Dr. Dozier explained that autism was a spectrum and after many questionnaires and testing, we realized that Spencer is on the far right of the spectrum. He is high functioning. He currently does not have an IEP, but if he needs one....I am willing.....

According to the Diagnostic Criteria for Asperger's Disorder from the DSM IV, Asperger Syndrome is characterized by:
Qualitative impairment in social interaction, as manifested by at least two of the following:
    (A) marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction (B) failure to develop peer relationships appropriate to developmental level (C) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people) (D) lack of social or emotional reciprocity
(II) Restricted repetitive & stereotyped patterns of behavior, interests and activities, as manifested by at least one of the following:
    (A) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus (B) apparently inflexible adherence to specific, nonfunctional routines or rituals (C) stereotyped and repetitive motor mannerisms (e.g. hand or finger flapping or twisting, or complex whole-body movements) (D) persistent preoccupation with parts of objects

(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.

(IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)

(V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.

(VI) Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia."

Kids with AS (Asperger Syndrome) look like other kids. You generally would not notice them standing out. You would have to spend time with them. Often, they do well in school. School provides a routine and kids with AS generally thrive on routine. Times like lunch or recess or switching classes in middle school can be difficult b/c they are social times and it's loud. 

Honestly, there are medications that can help alleviate anxiety for kids with AS. They can also help kids control aggression and impulsivity. 

I should also say again that many times kids are misdiagnosed as having ADHD (although this can certainly co-exist with AS), oppositional defiant disorder, bipolar disorder, reactive attachment disorder etc....

I asked Trevis to tell me the most helpful thing he wanted me to share about Asperger Syndrome and he said, "Throw all your preconceived notions out the window. Get rid of "I'll never" or "My Kid Will Never" from your vocabulary. Give your spouse lots of hugs, b/c parenting a child on the autism spectrum is difficult.

The statistics are now that 1 in 70 boys is on the autism spectrum. To find on online informal quiz for Asperger Syndrome, click here. For more information about autism or how to get involved, go to Autism Speaks.

In closing, I'd like to say that children who have Asperger Syndrome have a lot to offer. If you engage them on a topic of interest, you could learn a lot. I've learned all kinds of things about history, books, and Star Wars I would have never known. My son is very sensitive and perceptive to the intentions and attitudes of others. Please don't judge though about parenting or meltdowns....Like parenting any other child....it's trial and error...The main lesson I've learned is that thank God his mercies are new every morning for all the days he has a meltdown and all the days I screw up being a mom.....

He is fearfully and wonderfully made...
Psalm 139:14
I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.

With Much Love,
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4 comments:

  1. Thank you so much for this post! So well written and helpful. Blessings, Denise

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  2. Melanie,
    This is the sweetest post and so helpful to many out readers. It helps me currently in my classroom situation. Thank you for sharing.

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  3. This is a wonderfully educating post on AS. My youngest has AS, and we're in the process of having our middle child diagnosed as well.

    I was frustrated for years trying to figure out why my two youngest children had so many oddities, and behavior issues. After raising a neurotypical daughter first, I just had no idea what I was doing wrong with the other two.

    It's been a huge relief in the 6 months since my daughter was diagnosed, and while she still has a lot of difficult times, she's doing so much better in school, and over all.

    Teachers especially should be trained to recognize the 'symptoms' of a child who is on the spectrum, because all too often, even children who have a diagnosis are not handled properly at school.

    I have lucked out in that regard, in that the school we attend has extensive background in teaching children on the spectrum, and they even have their own ASD teacher on staff who works closely with each of the kids and their teachers.

    Thank you for sharing this!

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  4. I am a little behind on my reading, but this was beautifully said, my friend. You are an amazing mom and you are raising amazing kids...even on your bad days. :)

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