If you Googled the definition for autistic spectrum disorder, you’ll find something like this:
noun: autism spectrum disorder
a developmental disorder of variable severity that is characterized by difficulties in social interaction and communication and by restricted or repetitive patterns of thought and behavior.
Ask an autism parent, however, and you’ll likely get a completely different – very human, very emotional, and very raw – response.
Here are some things parents of children with autism want you to know, including facts and misconceptions about the disorder. There are even some autism parent tips here, as well as some tools to help you parent an autistic child.
Not all kids on the spectrum look the same. The spectrum is called a spectrum for a reason – children with autism are just as varied and unique as kids who aren’t on the spectrum. Other disorders, like Down’s, have common (not identical) physical signs, like a flattened facial profile, upward slanting eyes or a small head, ears and mouth.
Contrary to what a lot of people believe, autism isn’t recognizable by physical features – it’s a neurological development disorder. A child with autism doesn’t necessarily have a specific, identifiable facial feature that tells the world he has autism. This means that no two kids on the spectrum will look alike, so just because one child doesn’t look like another in the spectrum doesn’t mean they’re both not living with the same disorder.
Because of public misconceptions and a general lack of understanding, many parents report challenges especially in the school system or in organized sports, because some leaders and authority figures will deny a child their diagnosis simply because they don’t “look” like they have a disability.
The reality of a child with autism may be different from ours. Because autism causes the brain to process things a different way, things you may take for granted or easily ignore – like blinking lights, big crowds, loud music – may cause an autistic child to have an anxiety attack or a meltdown. For a child, a set of bright lights causes great discomfort and pain, even if for you they’re just lights you can tune out.
Autistic children have feelings – and they want to share them. A common myth is that children on the spectrum (especially those who are non-verbal) don’t feel joy, or pain, or any emotion at all. But that’s simply not true. Parents of children on the spectrum want others to know that even though their child may not speak, it doesn’t mean they don’t hear or feel. This is why it’s so important to speak to the child with respect and compassion – the child can hear and feel everything everyone around them says.
“Autistic” doesn’t define the child. Just as a child with diabetes isn’t just a diabetic, neither is a child on the spectrum. A child with autism is just that – a child. He may love soccer, books, and might have a favorite pair of shoes. She may be sensitive, love music, and prefer chocolate milk to regular milk. Parents of children on the spectrum want the world to see past the disorder and through to their child, taking care to see them for who they are.
Autistic children can and should play with other children. Studies have shown that up to half of all teens and adults on the spectrum don’t want to go outside of their own homes because they’re afraid of how they’re treated by other people. Imagine how younger kids on the spectrum feel. Kids with autism, although they may be easily triggered by certain sights, sounds or smells, are still kids, and they want to play just as much as kids who aren’t on the spectrum do. It’s a great idea for kids on the spectrum to assimilate with other kids – this kind of play will foster healthy relationships and will help blast the stigma of autism. Here are some tips on safe play.
Autism parents know best what to do for their autistic child. Although most advice comes from a good place and with good intentions, parents of children on the spectrum want others to be respectful. Joe, dad to Derek, 21, who was diagnosed with autism only four years ago, says that “I get other people mean well. But my wife and I have consulted with so many doctors and we’ve literally poured our whole lives into finding out everything we need to about the disorder to help our son. Not only that, we’ve figured out what works for Derek.” His request to others is to kindly keep unsolicited advice to a minimum, if it has to be shared at all.
Autism parents can’t just leave their children with just anyone, anytime. Other parents may be able to call up a babysitter from down the street, or someone highly recommended who might have a lot of experience with someone else’s kid. But the thing is, when you’re a parent of a child on the spectrum, finding a babysitter could mean interviewing hundreds of potential sitters, if a potential sitter can be hired at all.
“My son is six and my sister is over a lot – probably three or four times a week,” says Sarah, who’s mom to Owen, 6. “He knows her and loves her, but he has a hard time being alone with her. If he can’t see me, he’s panicked. So if my sister who he knows and trusts can’t be left with him, how could I think to ever leave him with anyone else?”
For this reason, have compassion for autism parents who can’t spontaneously go out to dinner or to a show.
One can’t catch or cure autism. Autism spectrum disorder isn’t a contractable disease, like a cold or the flu. It can’t be cured, either, not with aromatherapy or pills or other forms of medication or therapy. Period.
The autistic child isn’t purposely trying to be difficult. Autistic children are not bad kids. They’re not trying their best to disrupt your day or to make a scene. A child in frantic tears isn’t there to give you a hard time, or to make sure you’re miserable. On the contrary, as a matter of fact – if a child is having a meltdown, it’s because he’s the one having a hard time. It could be that he’s experiencing stomach pain (because kids on the spectrum have difficulty absorbing nutrients in their intestinal tracts), which might then lead to an impairment in the immune system, which then leads to brain malfunction. The Applied Behavioral Analysis Programs Guide explains that “because the brain and body of an autistic child do not always work as one, they have to express their pain and frustration in the form of things like meltdowns.” Because of this, autism parents say, a meltdown can’t be corrected like a tantrum. Their meltdowns are not the result of a lack of discipline, so kids on the spectrum do not respond well at all to physical or verbal punishment. What they need is compassion, routine and repeated exposure to good behaviors. Here is more information about ASD.
Autism parents are lonely and sometimes just want to be heard. It’s hard to be a parent of a child on the spectrum. It’s exhausting. Parents of autistic children need to be with their children all the time and are always on their toes. Some parents of autistic children are with them well into their child’s adulthood. Studies have shown that divorce rates among parents of children on the spectrum is higher than among parents of children who are not on the spectrum. Here are more parenting tips for a child with autism.
This is why it’s so important for autism parents to have a support system – they need people they can talk to, people who will listen, people who won’t judge.
What autism parents want isn’t awareness; it’s acceptance. The world is already aware of autism spectrum disorder, but what it needs is further education so that there can be full acceptance. One in 68 American kids will be diagnosed with the disorder, but even with this kind of striking number, society still hasn’t come to learn everything there is to learn about it. Autism parents want the acceptance to grow so that their kids have the chance to grow up in a world that’s understanding and kind, and so that they can have gainful employment with fair pay, affordable health care, and the opportunity to live a full and beautiful life.
If you’re the parent of a child on the spectrum and want more information, visit us at www.allianceabatherapy.com .
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