Living with autism: A mother's perspective

CINCINNATI - We know so little about Adam Lanza, but one thing that's repeated is that he had Asperger's syndrome, a form of high-functioning autism.

That is an appalling association for parents and mental health professionals who say children on the autism spectrum are not violent, and not capable of  the sort of premeditated violence Lanza committed. We sat down with a local mother and health professional to for their thoughts.

Lamonica Friedman,a mother of four boys and one with autism, says she's always prepared.

"If Jacob has a meltdown, it's usually crying," said Friedman.

Jacob is 16 and goes to Amelia High School. His mom say's he'll probably never live on his own.

"He's working on the calculator, he's working on counting money. He's focusing on daily life skills," said Friedman.

It's a challenge, but Jacob's mom is positive and tries to stay one step ahead.

"Loud noises, or if the place is dark or has a lot of TVs playing a lot of stimulation he can't handle. I try to think of things that he's gonna need and then we always need to be prepared to leave," said Friedman.

Lanza is said to have had Asperger's syndrome, which is on the autism spectrum.

Donna Murray is co-director of the Kelly O'Leary Center for Autism at Cincinnati Children's Hospital. She says most people with autism are more afraid of other people than likely to harm them.

"This feels in many ways like a giant, throw up your hands, like a set-back," said Murray, in reference to the Newtown shootings.

Murray says the news of the shooting hit her hard.

"I think that the fact that the individual had Asperger's syndrome is not relevant, as we would not really be talking about gender, ethnicity or other factor except that this was an individual who needs severe mental health help," said Murray.

It's a never-ending job, advocating for a child with autism. Lamonica works hard for Jacob, and for others, through her work at Families with Austism Spectrum Disorder (ASD).

"Sometimes you do feel isolated, and you do feel alone and you feel like you're being judged.  I think having a support system is very important, whether it's your family or other people," said Friedman.

"The people who know what's happening in the community and know who's doing what, and how to gain access to those resources are other parents," said Murray.

When families don't get the help they need tragic things can happen.

"There were probably cries that weren't recognized and then it led to this horrible, horrible tragedy," said Murray.

But at the end of the day, Jacob's mom just wants what every parent wants.

"To Jacob his life is happy.  What do you want for your kids?  You want them to be happy," said Friedman.

Helpful resources for families:

Autism Society of Greater Cincinnati

Cincinnati Center for Autism

Hamilton County Developmental Disabilities Services

Starfire

National Institute of Neurological Disorders & Stroke's signs or symptoms of Asperger's Syndrome:

Children with Asperger syndrome may have speech marked by a lack of rhythm, an odd inflection, or a monotone pitch.  They often lack the ability to modulate the volume of their voice to match their surroundings.  For example, they may have to be reminded to talk softly every time they enter a library or a movie theatre. 

Unlike the severe withdrawal from the rest of the world that is characteristic of autism, children with Asperger syndrome are isolated because of their poor social skills and narrow interests.  Children with the disorder will gather enormous amounts of factual information about their favorite subject and will talk incessantly about it, but the conversation may seem like a random collection of facts or statistics, with no point or conclusion.   They may approach other people, but make normal conversation difficult by eccentric behaviors or by wanting only to talk about their singular interest. 

Many children with AS are highly active in early childhood, but some may not reach milestones as early as other children regarding motor skills such as pedaling a bike, catching a ball, or climbing outdoor play equipment.   They are often awkward and poorly coordinated with a walk that can appear either stilted or bouncy. 

Some children with AS may develop anxiety or depression in young adulthood.  Other conditions that often co-exist with Asperger syndrome are Attention Deficit Hyperactivity Disorder (ADHD), tic disorders (such as Tourette syndrome), depression, anxiety disorders, and Obsessive Compulsive Disorder (OCD).

Autism Society's symptoms of autism:

The characteristic behaviors of autism spectrum disorders may or may not be apparent in infancy (18 to 24 months), but usually become obvious during early childhood (24 months to 6 years).

As part of a well-baby/well-child visit, your child's doctor should do a "developmental screening," asking specific questions about your baby's progress. The National Institute of Child Health and Human Development (NICHD) lists five behaviors that signal further evaluation is warranted:

    • Does not babble or coo by 12 months
    • Does not gesture (point, wave, grasp) by 12 months
    • Does not say single words by 16 months
    • Does not say two-word phrases on his or her own by 24 months
    • Has any loss of any language or social skill at any age

    Having any of these five "red flags" does not mean your child has autism. But because the symptoms of the disorder vary so much, a child showing these behaviors should have further evaluations by a multidisciplinary team. This team may include a neurologist, psychologist, developmental pediatrician, speech/language therapist, learning consultant, or other professionals knowledgeable about autism.

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