Guest Author - Bonnie Sayers
Although autism has been a part of my life for eight years I still found Autism: Now What? The Primer For Parents helpful to me as a parent. I related to family issues in Chapter 6 when it mentioned, "Grandparents have a particularly difficult time with the diagnosis. Grandparents also have the distinct disadvantage of having lived at a time when autism was essentially a taboo subject. In their day, such a disability was a scourge of sorts on the family and, as such, some grandparents may be tempted to “assign blame” on the in-law’s genes and/or the in-law’s parenting skills." This is part of the reason why I have not been in touch with my own family. Many just do not comprehend autism.
Some of the chapters within Autism: Now What? The Primer For Parents are only two pages in length. There are some black & white photographs and stick figure drawings within the pages. The authors of this book have a 14-year old son with autism, they have been there, they get it and want to help the newly diagnosed families through the first steps when acquiring the diagnosis.
There are ten chapters, glossary and acronyms, a note about the authors and illustrator as well as a look back at their journey into autism. The preface mentions offering insight into what you can expect and hoping the readers will feel validated in their own struggles. Autism: Now What? The Primer For Parents is an easy read that is not overwhelming. It is the ideal book for therapists, support groups, workshops, teachers and extended family. Since many receive the diagnosis or mention of the word “autism” in a report by an SLP (Speech Language Professional) this would be perfect for therapists to give to parents when new to this process.
Introduction - here it mentions readers falling into one of four categories who would benefit from this book. Parents of newly diagnosed children, educators who are new to autism, friends and family members and parents seeking answers to their children’s developmental delays. Also a brief mention of the other diagnoses that fall within the Autism Spectrum, such as PDD-NOS, (this is pervasive developmental disorder, not otherwise specified.
Chapter 1 – Getting a Diagnosis – some medical tests you may need for your child and the professionals you will be seeing in this early stage. Blood and urine tests, MRI (Magnetic resonance imaging) and EEG (elecroencephlagraph). Therapists include speech, occupational (OT), physical and audiologist. I know from experience that most autistic children appear deaf and a Doctor, preschool teacher or other professional will insist you have hearing tested. This is really not an easy task for a child with delays. Personally neither of my children have ever had an MRI or EEG. This chapters has a couple paragraphs on feeling angry and wondering when it gets better.
Chapter 2 – The Basics – there are diagrams of a brain discussing processing sensory information. This chapter also discusses genetics and environmental factors, statistics, treatment options and research.
Chapter 3 – Medical and Therapeutic Options – psychotherapy, medication (my son 4 years later is on medication), conflicting advice, alternative therapies and tips for coping as parents.
Chapter 4 – Special Education – Early Intervention, otherwise known as EI, transition to public preschool and frequently asked questions about these transitions. It is crucial at this stage to get early diagnosis and help within the system. This discusses placement options, observing programs, transportation and toilet training issues. A tip at the end of this section is great advice, bring a photo to the IEP (Individualized Education Program) meeting so the professionals can see the child they are discussing. I have two large notebooks with the photos of my children placed in front of each.
Chapter 5 - Advocating for your Child’s needs – This is a quick two page summary with ideas to point you in the right direction, like support groups and how to work the system.
Chapter 6 – Family issues – Another two-page summary mentioning siblings, grandparents, and extended family members. This gives you an idea of how they might react to the term autism and tips on smoothing this over.
Chapter 7 – Helpful hints and coping strategies – communication, consistent routine, difficult situations, sensory challenges, regressions, visual aides and a witty listing for the parents of ten ways to keep a healthy level of sanity. These are suggestions I have not tried. "Sit in your parked car with sunglasses on and point a hair dryer at passing cars. See if they slow down." I doubt this would work safely for me in Los Angeles!
Chapter 8 – Resources – this is an alphabetical listing of organizations with their name, address, phone, fax and internet address. There are also some online organizations to order products from.
Chapter 9 – Recommended Reading – the listing is grouped into categories such as sibling books, teacher resources, family guides, books written by people with autism, Asperger syndrome, medications, sleep challenges and toileting.
Chapter 10 – The Future – this helps other parents know that they are not the only ones wondering if their child will be able to hold down a job or ride a car.
Glossary & Acronyms – AAC – Assistive Augmentative Communication, my son had an assessment and now gets services for this. This would be for a non-verbal child. ADA, Americans with Disabilities Act, DD – Developmental Disabilities, NT – this is how parents refer to kids who are normal, actual term means neurologically typical, PECS – Picture Exchange Communication System, tactile – relating to the sense of touch.
A Family’s Journey into Autism – the authors share their experience from the diagnosis stage at three years of age, includes photos, a list of signs of autism they missed (not wanting to open gifts, difficulty nursing, a fascination with overhead lights and ceiling fans), denial, cycle of grief. This cycle includes denial, guilt, shame, isolation, panic, anger, bargaining, hope, acceptance, shock and depression.
My copy had many highlighted sections and it helped to reflect back to the initial diagnosis stage for each of my sons. I sold it along with some other books on ebay. I learned some tips to offer others since the teacher points new families in my direction. Once you have finished with Autism: Now What? The Primer For Parents I would suggest the book by Elizabeth Gerlach entitled, Autism Treatment Guide.
Previously published on Epinions
Autism: Now What? The Primer For Parents is available at the low price of $6.49 at Special Needs Project. They are located in Santa Barbara, CA. I have seen their tables at many conferences over the years and have made purchases myself from their website. My Review of their online store.
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