Guest Author - Bonnie Sayers
Back when Nicholas had turned seven I wanted to explain to him about Matthew, his younger brother who is nonverbal, and offer some examples of others that share his peculiarities to some degree. While there are some useful photographs in Everything You Need To Know When A Brother Or Sister Is Autistic, it is geared toward the older child who is probably ten years and up. I would suggest these books for the younger siblings to share:
My Brother Sammy
My Brother Matthew
Andy and his yellow frisbee
Joey and Sam
The author, Marsha Sarah Rosenberg, of this particular book in the The Need to Know Library is a freelance author with this being her first book geared towards young adults. Some of the other topics in this series include:
When a parent is out of work
Your legal rights
Being a Vegetarian
Living with a single parent
It is not mentioned where this author received her information pertaining to autism but the figures listed that autism occurs in fifteen out of every 10,000 births is not correct.
Everything You Need To Know When A Brother Or Sister Is Autistic starts off with an introduction by way of ten-year old Jacob having a new baby brother Noel and his feelings on becoming a big brother along with his hopes and dreams for the future relationship with his new sibling. Five years later Noel has not really responded to his brother due to his disability. Jacob now understands autism but sometimes is embarrassed to bring friend’s over because his friends will think that Noel does things on purpose. Noel prefers to sit for hours rocking back and forth on the floor or watching a train move about without even moving a muscle.
When Nicholas was first diagnosed Matthew was deemed "at risk" by the Regional Center system in California and was able to get into an Early Intervention Program along with his first diagnosis of ADHD. There was another boy in the next room who exhibited these behaviors and the teacher would just place this child down on the floor and leave him there for the three hour period. I learned a lot from his Mother on resources and what was best for our kids. It helps to find another parent to show the ropes and mentor them along.
Everything You Need To Know When A Brother Or Sister Is Autistic consists of sixty-four pages covering seven chapters, a glossary and an index. They are listed as follows:
What is Autism?
Triad of Impairments
Diagnosis and Treatment of Autism
The Spectrum Disorder
When Your Brother or Sister is Autistic
What About Me?
Where to Go for Help
For Further Reading
Autism is more prevalent in boys than girls and usually is identifiable between the ages of two to three, although the book mentions some children are born with autism, I have yet to know of any examples of this. I am not sure if this is a fact or statistic since the author does not reveal where she obtained her data. The obvious signs of something not exactly right with your child will be the lack of speech or a delay in language. Other symptoms that become apparent at this stage is lack of social interest and playing with toys a different way. They will not seek out others and will prefer solitary play and not explore parallel play till they are older. The author states that, "A better understanding of the causes of autism is crucial, as it may lead to the development of possible cures for the disorder".
In the Triad of Impairments chapter the sections are broken into Communication Disorder, Social Interaction, Limited Imagination as well as other typical behaviors such as hypersensitivity and tunnel vision. "This is not because people with autism don’t like others or are fearful of them; rather, it is usually because they are hypersensitive to sensory stimuli. This means that autistic individuals are very strongly affected by sights, sounds, smells, and touch (physical contact) in the outside world."
A word of caution to families with autistic children and considering moving, check out for nearby police stations, fire stations and railroad stations to avoid over stimulating your child and use caution when moving close to any ocean, lake or stream. I have read horrific true stories of children getting out of the house to explore these areas.
As noted in the Diagnosis and Treatment of Autism chapter, a team of professionals such as a speech therapist, a child psychiatrist, a psychologist or a social worker will be the ones making the diagnosis of autism. It is not mentioned but I would also add that nursery school teachers, assistants, relatives and other school settings autistic tendencies or behaviors/symptoms can be prevalent and any of these individuals might make the suggestion of having an assessment done on the child. I urge all families that have suspicions of an autistic child not to wait for a professional to tell you but to seek out the help of them in order to get the correct diagnosis. The earlier the diagnosis the faster the child can benefit from Early Intervention Programs and speech therapy. "Early Intervention will help the autistic child to reach his or her maximum potential in life."
"Although there is no known cure for autism, it is a treatable disability." Behavior Modification, Speech Therapy, Music Therapy, Sensory Integration, Dietary Intervention, Social Stories (Carol Gray), Medications are all discussed under the sub-section of How can People with Autism Be Helped? We have personally tried most of these therapies except for the social stories and medications. The medications mentioned include Melatonin for sleeping, the hormone Secretin, Vitamins and Magensium. There is mention of Naltrexone for increasing general happiness and reduction of self-injurious behaviors.
"Professionals use a handbook called the Diagnostic and Statistical Manual, fourth edition (DSM-IV)to diagnose both autism and several autism-related disorders that include some but not all of the characteristics of autism". When Nicholas was first diagosed the Neurologist recommended both boys being tested for Fragile X Syndrome. I have learned from many parents that this happens with them as well.
It is hard when you first learn what the word “autism” means and then you quickly turn to Fragile X Syndrome focusing more on that until the test results show it is not Fragile X. This turns into an emotional roller coaster ride while you try to sort out all these new terms related to your newly diagnosed child.
I felt it was overlooked by not explaining it further in Everything You Need To Know When A Brother Or Sister Is Autistic, but instead focusing on Rett’s Disroder, Landau-Kleffner Syndrome, Angelman Syndrome. Also mentioned in this section was The Autistic Savant, Asperger’s Syndrome and Prader-Willi Syndrome. There was also no mention of Tourette’s Syndrome. Every conference I have attended that is on autism has had mention of Tourette’s with a vendor sharing resources.
Everything you need to know when a brother or sister is Autistic explores what it is like to be a teenager with a sibling who is autistic and the feelings of isolation, guilt, pressure and resentment. There is also a list of what you need to know about autism and what you as a sibling can do to help. Autistic individuals tend to be visual learners and seek out the computer or television screen. A sibling can encourage the abilities the autistic child has by reading to them and speaking in a softer tone.
The next section moves along to when the autistic child becomes a teenager and how the sibling might feel a sense of pride when there is an accomplishment with their sibling. They will feel loyal to their sibling and at this point might want to start advocating for the rights of those with autism and other disabilities. It is mentioned that the siblings have the longest relationship within the family unit. The older sibling could benefit from a support group at this time and learn from other siblings at “sibshops”.
A few years ago we joined an organization that offers psychotherapy for the parents while the children and siblings are in another room forming relationships and bonding with the guidance from speech and language student therapists. It took many sessions for Nicholas to start interacting with the other autistic children since he preferred the company of the adult male student playing games and telling stories.
The glossary lists sixteen words with a brief definition consisting of two pages. Among those listed are social worker and speech therapist, which are pretty generalized and easy to comprehend titles to begin with, in my opinion. Where to go for Help lists seven organizations along with address, phone number and web address. There are three listed for Canada. The books to read are from 1990-1998 and I would suggest alternate findings by simply doing a search over at amazon and then finding said books at your local library. You do not want to get overwhelmed too quickly with all the data pertained in books on autism or want to incur the expense, so borrow first and pick the ones you want to purchase from that reading list once complete.
It is all about educating and advocating to the general public on autism and how our children are affected by stimuli within their environment. By reading this and other books that focus on autism perhaps others will better understand autism instead of turning a blind eye away from those who are just a much a part of society as anyone else is.
Previously published on Epinions
The DK Guide to Dinosaurs
Classroom Modifications for the Autistic Student
Safety In The Home