I’ve introduced my special needs daughter Aurora several times in this column. What I’ve not discussed is how being the sibling of a diagnosed autistic brother affects her behaviorally and socially. Not only does she suffer the stress of her brother’s behaviors and outbursts on a daily basis, but she exhibits many autistic traits herself. For children to be diagnosed with autism, they must exhibit a certain number and severity of traits. This can be complicated when a child has multiple comorbid conditions that can interfere with the examiner’s observations. Many children, some studies quote up to 50 percent of siblings, exhibit impairing autistic traits yet do not quality for a diagnosis.
Aurora often doesn’t show empathy toward others; she has difficulty forming relationships with peers, exhibits extreme distress over minor changes in routine and has an overly narrow area of focus when playing or a restricted range of interests. She flaps her hands and beats her hands with her hands (classic autism traits). But still, I had her evaluated twice for autism, and each time she didn’t meet the criteria.
Her sensory needs require many ultra-soft blankets and expensive custom clothing beyond our budget. We have provided her with many stuffed animals and a sensory swing for comfort. Like many special needs parents, I have a wish list of items I could get her like the labrador puppy she craves for companionship and anxiety help – but the cost of lifelong cost of vet bills and food are too much. She is behind on her e-school lessons for the year, mainly due to stress, health issues and doctor appointments. Her Asperger’s brother qualifies for up to$20,000-year through a state scholarship for autistic children to attend a school specifically for autism. Aurora does not.
From: Many Children With Autistic Traits Go Unnoticed
Medical News Today
Article Date: 21 Jan 2009
No Author noted
“Research has already established there are a lot more school-age children with mild but measurable autistic traits or ‘social communicative deficits’ than there are children clinically diagnosed with autistic spectrum disorder (ASD). But what was not clear was how many such children there might be and how possessing such deficits might hamper their development and adjustment.
The research showed that: This impairment was linked with functional impairment at school, and particulary with hyperactivity and conduct disorders.”
From: Autism Plays Hide-And-Seek in Family Genes
By Bruce Bower, Science News
“Four times as many boys as girls meet psychiatric criteria for autism. But the inclusion of mild autism traits narrows that ratio to three boys for every two girls. Subclinical autistic traits deserve close scrutiny for possible detrimental effects on children,Constantino adds. Kids with undiagnosed autism-related social deficits may find it hard to make friends and could experience a worsening of other conditions such as learning disabilities and attention-deficit disorder. Subclinical traits may have benefits as well, he adds. Disinterest in social activities and a focus on details might boost math, science and computer skills.”
Due to these restrictions, I find myself purchasing materials at my own expense in the middle of a divorce to take over what I consider to be the roles of the school and covered by our medical insurance. An iPad would benefit my daughter greatly, but it’s not going to happen on our budget. I’m trying to assemble a sensory room, but that’s very difficult on a limited budget. Our entire family suffers her daily meltdowns and cries for help.
I feel that science and therapists are, in essence, ignoring many children, mainly girls. Coping skills are just one piece of the autism puzzle. What about these children’s social, academic and family relations? Where will they be in 10 to 20 years?
It’s time we stopped ignoring these borderline children and provide them with the services they deserve. Many of the children are girls (who have better coping skills as proven in multiple studies) and siblings of autistic children. At current, there are no laws being considered or fundraising being done to help or protect these helpless children.
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