The words millions of parents fear are “your child has autism.” After a parent receives a diagnosis on the autism spectrum, there is going to be a wide variety of emotions elicited. Initial reactions can range anywhere from guilt, denial, shock, anger, and depression. Once the news has set in and a parent feels ready to advocate and get educated about everything, the amount of information available can be overwhelming. Just writing this piece over the past month has been overwhelming and 1) I’m not going through the actual process and 2) my process only took about a month. Parents read literature out there claiming there’s a cure for autism, and get hopeful. They read literature talking about aversive treatment options, and get scared. They read that their child could be autistic due to decisions they made as a parent, like vaccinating and watching television, and they feel guilty. They read about the process of getting a diagnosis, and feel labeled. All of these feelings are a natural part of the beginning process of living with a child who has autism.
One thing that might help parents feel less overwhelmed is to start at a local level. The Autism Society of America is a volunteer-run organization that has chapters throughout the country. You can find a local chapter by going here. The chapters will have access to a variety of resources such as professionals who specialize in pervasive developmental disorders, parents of other children diagnosed on the spectrum, as well as local fundraisers, seminars, and a host of other things to help along the journey. This is a great place to get started. In the meantime, reading some books and beginning to understand autism spectrum disorders more in depth is another important part of the process as well. The more educated parents become, the more they’ll understand the process and develop as a better advocate for their child. The old cliche’ knowledge is power illustrates a great point here.
Some commonly recommended books to read are:
- Let Me Hear Your Voice by: Catherine Maurice (a parent)
- Sonrise: The Miracle Continues by: Barry Neil Kaufman (a parent)
- Emergence: Labeled Autistic by: Temple Grandin (an autobiography)
- Nobody, Nowhere and its sequel Somebody, Somewhere by: Donna Williams (an autobiography)
- Children With Autism - a Parent’s Guide by: Michael Powers
- Autism Treatment Guide by: Elizabeth K. Gerlach
This list has been compiled from autism-resources.com I chose the most commonly recommended books for my intended audience to extract from the list and post here. For a more comprehensive look at the literature available, this is a good place to start.
A crucial first decision parents are faced with is which treatment option to pursue.
The Interdisciplinary Council on Developmental & Learning Disorders and Stanley Greenspan are well known for their Floortime approach to therapy. It takes on a developmental perspective in which there is a systematic way to help the child improve on or acquire targeted developmental milestones. Its main tenant is to allow the child to lead during play time while intentionally encouraging them to interact more.
Another approach to treating autism that is commonly used is Applied Behavior Analysis. This approach to caring for a child is experimental and involves manipulating the environment, observing and tracking changes in behavior, and analyzing the results to make further changes. I ran across a father’s website during my research and it is very comprehensive with testimonials, success stories, home-based program information, insurance issues, legal issues, as well as many other topics that are important to understand.
Sensory Integration therapy is the treatment option that focuses on developing the nervous system. It involves specific sensory activities (also known as a sensory diet) aimed at the proprioceptive, vestibular, or tactile issues the child may be experiencing. Some example of the techniques utilized are swinging, brushing, wearing weighted vests, deep pressure massages, and bouncing on a therapy ball. These are supposed to help the child regulate their sensory responses. Most sensory integration therapies are led by Occupational Therapists.
TEACCH—Treatment and Education of Autistic and related Communication-handicapped Children is a program of services used autistic people. It’s unique in that it uses a variety of approaches in designing a treatment that is centered around the individual needs and abilities of the person.
For a more comprehensive look at the different treatment options available, please look here, here, or here to gather more information.
Here at Constant Chatter we have a large number of parents with infants and toddlers, and autism is a subject that comes up often. Like I mentioned in a previous blog, the younger a child is, the more difficult it is to determine what are symptoms of autism and what are either shifts in developmental patterns or impairments in one specific developmental area. There has been great information and helpful resources provided over the past three weeks. As far as my little corner of the internet is concerned, it is my hope that I educated you and raised awareness of autism and its many dimensions.
Southerner
Another book that I found very helpful [not too technical and a 'dip in' rather than read a whole telephone directory] is Pervasive Developmental Disorder by Barbar Quinn and Anthony Malone [sorry if that's advertising] The language is straightforward with lots of examples. I liked it because there was a great deal of terminology [like echolalia / tics / stims] and so on that had clear explanations.
Please feel free to delete this if you feel it is inappropriate.
Best wishes