AUTISM is a severely incapacitating lifelong developmental disability that typically appears during the first three years of life. It occurs in approximately one out of every 68 births and is four times more common in boys than girls. Autism Spectrum Disorder has been found throughout the world in families of all racial, ethnic, and social backgrounds. No known factors in the psychological environment of a child have been shown to cause autism.
AUTISM is a neurological disorder manifesting the following symptoms in varying degrees:
Disturbances in the rate of development of physical, social and language skills
Abnormal responses to sensations. Any one or a combination of senses or responses are affected: sight, hearing, touch, balance, smell, taste, reaction to pain, and the way a child holds his or her body.
Speech and language may be absent or delayed, while extraordinary or “savant” capabilities may be present.
Abnormal ways of relating to people, objects, and events.
AUTISM occurs by itself or in association with other developmental disabilities, as well as disorders which affect the function of the brain such as viral infections, metabolic and immunologic disturbances, and seizures.
It is important to distinguish autism from mental retardation or mental illness since diagnostic confusion may result in referral to inappropriate or ineffective treatment modalities.
The severe form of autism spectrum disorder may include extreme self-injurious, repetitive, hyperactive and aggressive behavior.
A plethora of special education approaches and programs, especially early intervention, have proven to be most effective in addressing those with autism spectrum disorders.
Autism is treatable — early diagnosis and intervention are vital to the future development of the child.
The accompanying illustration portrays many of the more visible signs and symptoms of autism. If a child exhibits several or many of the symptoms shown and if a given characteristic is constant and inappropriate for the child’s age, further evaluation is recommended.
People with Autism…
MAY possess the following characteristics in various combinations and in varying degrees of severity.
Is not responsive to normal teaching methods
Displays inappropriate laughing and giggling
Is echolalic (has a tendency to repeat what another person has just said)
Has no fear of real dangers
Hits self or inflicts pain on self
Has an aversion to being cuddled
Is extremely active or passive
Has an aversion to changes in routine
Avoids eye contact
Possesses gross/fine motor skills
Indicates needs by gesture
Displays an apparent insensitivity to pain
Sustains odd play or uneven physical and verbal skills
Displays crying tantrum or extreme distress for no discernible reason
Has difficulty mixing with other children
Demonstrates an inappropriate response or no response at all to sound
Possesses a stand-offish manner
Has inappropriate attachments to objects
More Facts about Autism
Autism is a neurological disorder affecting brain function.
Autism occurs once in every 88 births.
4 out of 5 diagnosed with autism are boys.
4 out of 5 diagnosed with autism are first-born.
Autism typically appears during the first three years of life.
Early intervention is the most vital intervention.
Autism impairs social and communication skills.
Autism prevents understanding of what the person hears, sees, or senses.
Autism is an “equal opportunity” impairment – affects all racial and ethnic groups and social levels
Autism has no known cure.
Those with autism never stop learning.
Appropriate education and training makes autism less disabling.
Those with autism can lead productive lives.
HOW TO TALK TO CHILDREN WITH AUTISM ABOUT DEATH
By Jennifer Cerbasi, New Jersey Special Education Teacher
Jennifer Cerbasi teaches at a public school for children on the autism spectrum in New Jersey. As a coordinator of Applied Behavioral Analysis programs in the home, she works with parents to create and implement behavioral plans for their children in an environment that fosters both academic and social growth. In addition to her work both in the classroom and at home, she is also a member of the National Association of Special Education Teachers and the Association for Supervision and Curriculum Development.
The only thing harder than losing a loved one may be explaining that loss to your child. Now consider explaining the death to a child with autism.
Some people mistakenly describe all children with autism as much less emotional or even “robotic” as compared to their typically-developing peers. This is not true. Children with autism feel a variety of emotions, and the death of a family member or friend can be devastating to them.
There are some important things you can do to help your autistic family member cope with this loss.
State the facts
Children with autism are concrete thinkers. Be very clear and say “He died. That means we won’t see him anymore.” Explain the illness from which the deceased suffered in simple terms. “He had a heart attack. That means his heart did not work anymore.” It’s important to explain the cause of death to children so they don’t think people simply vanish with no rhyme or reason.
Incorporate your religious beliefs
Children with autism, like all other children, learn values and morals from their parents. Explain religious customs or traditions relating to a family member’s passing. Include your child with autism in your prayers for the departed. Don’t be afraid to explain the concept of heaven (if that’s what you believe in); just use clear and concise language.
Acknowledge your child’s feelings
Be clear that it is acceptable to feel sad, angry, or confused. Children look to you for cues, so it’s fine to let them see you cry. Talk to them about how you are feeling in clear terms. Model appropriate expression of emotion by talking about your loved one. “Playing cards with Grandpa made me feel happy. I feel sad because I won’t get to play cards with Grandpa anymore.”
Write a story together
Children with autism are visual learners, so writing a story together about the loss can help your child make sense of all that’s happening. Your child can draw pictures for the story, or you can use real pictures of your family, your home, and even the church where the service will take place. Writing a story about the funeral will help prepare him or her for what’s to come and what behavior is expected of him. He may need to be prepared if you would like him to receive visitors and accept condolences. For example, write, “If someone says I’m sorry for your loss, I will say Thank you.” Include the days and times of the services, clothing he is expected to wear, and the sequence of events in the story.
Losing a loved one and managing the days that follow can be overwhelming. Including your child with autism in the grieving process will help you both come to terms with the loss and move forward in a healthy way.
In an effort to provide the best care to their autistic child, parents often unintentionally give less attention to their other children.While this is an understandable consequence, parents can end up feeling frustrated and guilty; the siblings feel neglected or as if they are not as special as the special needs child.
Adding to the stress is the embarrassment reported by siblings when their brothers and sisters act out in the community – at church, school or at family gatherings. To make things even more complicated, siblings may feel a sense of responsibility in their siblings’ disability or a sense of helplessness and guilt that things are easier for themselves.
What can be done to help families?
Kristin Mahoney, Program Coordinator of Wesley Spectrum Services, offered these tips at a Autism – Pittsburgh support group meeting:
- Take time to recognize the typical children for their own unique contributions to the family. Reward them for their patience in dealing with frustrating situations and try to be understanding of their feelings.
- Divide and conquer. Arrange now and then to have a spouse or friend take the typical child away from the home for special outings – to the library, park, etc., while you remain with the autistic child.
- Continue to encourage new interests even though it may be more difficult to get them to participate in dance classes, sports practices, etc.
- Provide clear explanations to their typical siblings about autism and the symptoms, behavior associated with it. Use language that they can understand and try to be positive about the situation. You might be surprised at their interest—and willingness to feel part of your effort.
- Arrange opportunities for the typical siblings to meet other siblings of autistic or special needs children. Knowing that they aren’t the only ones feeling this challenge can be a great comfort.
STRESS BUSTER'S SUCCESS TIPS
- Define success for your own family!
- Ask for help! The Autism Society of Pittsburgh Support Group can be a source of positive help for you.
- Build on your child’s strengths! Remind yourself daily of their progress – and yours!
- Use sensory activity! – for you and your child.
- Do you yourself need calming or stimulating activities! Get outside! Physical activity and fresh air are invigorating.
- Connect to your sense of wonder! The littlest things like baking cookies, blowing bubbles or watching a waterfall together can be so positive.
- Play to your and your child’s temperament! Consider that they may prefer to be quiet or alone during stressful times.
- Keep track of schedules and stress markers! – helpful in preventing more stress down the road.
- Remember the value of standing with your child! Never give up on advocacy!
THE CASE FOR GUARDIANSHIP
…and What Can Happen if You Don’t Have It
You have worked for years to make sure your autistic son is comfortable in his lovely suburban group home. He gets all his favorite foods, plenty of exercise, lots of outings and has his own pool table in the basement. On a sunny June day your son’s roommate has a medical emergency, and personnel are in and out of the house. So is your son. He goes for a walk by himself, down the usual path he takes with his aide. A neighbor’s new dog comes up and barks at him. Startled, he waves his arms and yells obscenities. People look out the window, and some passing kids on bikes laugh and yell at him. He makes a move to chase them, and the next thing you know, a police car arrives. The officer attempts small talk, and gets an unusual response. He exits the car and approaches. Your son, always fascinated with cop shows, sees the gun in the holster and wants to touch it. The next thing he knows, he is face down, handcuffed, and resisting arrest. When you get the phone call from the group home, you rush to the police station to calm your son and explain his situation. You are told you cannot see him, as he is over 18 years old and suspects are not allowed visitors. You can only imagine what is happening to him in the holding cell in the presence of actual criminals, and you hope like crazy he does not have a meltdown if the guards try to move him or there are any sudden noises. He has no guardian.
Your son is high functioning, has a spotless behavior record and is enrolled in college. You think that all the work you have done together to help him overcome his disability has paid off. All is good in both your worlds. He phones a local corporation as directed by his professor, inquiring about internships. He cannot get the information he wants in a timely fashion and gets caught in an autism “thought loop.” He calls repeatedly, becomes upset and says threatening things. One year later, he is incarcerated at a state prison. Your son was never violent, he never physically met his accusers, his perseveration frightened the person who took his calls, and the corporate lawyers handled the rest. While an inmate, he has been tased, hit over the head, and otherwise abused by jail personnel because, due to disability, he cannot filter his comments. He has celiac disease but not a proper diet so experiences bleeding. He cries every day and asks when he can go back to college. His life is over as far as you can see it. He has no guardian.
Your daughter is an amazing, gentle, talented writer and artist. It is your hope that she will make money in this regard. You live in a nice house in a cul-de-sac next to the woods; it is a beautiful and safe place. She will inherit the house; she is able to manage her life, can walk to the store, and can handle her checking account, pay bills, and cook. You have done all you can to educate her and make her capable of living virtually independently. You are there. Many years later, following your sudden decline and death from early onset Alzheimer’s, she lives alone in the house, walking through the woods at times to get food from the cheapest store. She writes all day and illustrates her stories at night. She keeps to herself, as she always has, so nobody ever knows that there is a 3’x7’ hole in the garage door she walks through sometimes (and so can anyone else). She has run through all the cash left from life insurance. She paid all the bills for three years, and now utilities are being disconnected one by one. Taxes are owed on the house you left in your will (which she cannot find). The sewer backs up frequently in the basement. Her cousin always knew her as “that one who doesn’t like to be bothered,” but he still leaves her $20 from time to time at the bottom of her steps because he is unable to climb them. She is proud that she can live on $10 a week, that she saves water in containers to cook with, or wash her hair in the sink in case water services get turned off again. She has never had welfare, social security, or a job. She is entitled to SSI or SSDI, but even if she knew, she doesn’t know how to apply for it. To the system, she is nonexistent. Your daughter is now 61 years old, and in great physical shape when she has enough to eat. Social security tells us there is a 120-day waiting period to determine her case, and DPW requires her to get herself to the office in person, respond to interview questions, and then get a psychological evaluation, then wait even longer to get help. She could live another 20 or 30 years – but how? No guardian.
You may need a whole pound of prevention to avoid these actual scenarios! Many families living with autism or Asperger Syndrome need to get limited or full (plenary) guardianship, regardless of perceived ability level, and regardless of worries of offending the adult child. Temporary hurt feelings or misunderstandings can ease, while permanent legal, physical, or financial trouble often cannot. The guardianship process should start at age 17½ to give adequate time prior to the age of 18 (“the age of majority”) when legal parental oversight ceases. If guardianship is NOT obtained:
· and the adult-aged child moves into a facility that assumes guardianship of residents upon placement (public or private large residential facility, supervised apartment, shared living or assisted living facility), that organization or service provider can get full guardianship, and primary control of every aspect of your son’s or daughter’s life;
· parents will have to combat a facility’s legal team for any rights to information, treatment, medication, placement, discharge, or finances, and fight – expensively – to get guardianship of their own child;
· your son or daughter can fall easy prey to new “friends” who offer housing, food, cigarettes, parties, sex, and freedom from parental authority…and in return take their disability or other checks, prescription medications, and otherwise abuse and harm your child. This has led to illness, injury, unimaginable deprivation, even death;
· your son or daughter, encountering any trouble with the law, will still be given only one phone call;
· a judge, seeing that the person has no guardian, must assume competency and that the person has complete understanding of right from wrong;
· a judge will be much less likely to “go easy” on a person who is competent, as opposed to a person whom another judge, via the guardianship process, has declared incompetent (or partially incompetent). Disabled people without guardians get regular prison sentences every day. There is no manifestation of disability hearing. Once convicted, they are a criminal. Period.
Here are some guardianship facts. (For a great explanation of the many aspects of Pennsylvania guardianship, download this PDF document.)
· Parents or other concerned parties need to ensure that they have major decision-making roles as long as possible, and arrange for legal transfer of these in their absence.
· Guardianship provides true monitoring, enabling guardians to visit and assure the well-being of their loved one in or out of any facility or setting where he or she receives services.
· Without guardianship, you have no rights to visitation, treatment or other records, medications, meetings, finances, leases, loans, contracts, or anything else regarding your son’s or daughter’s special needs.
· Limited guardianship can assure that you maintain oversight in the specific areas you arrange, leaving the adult-aged child free to make his or her own decisions in other areas.
· Any person with a guardian maintains many rights, such as the right to vote, to have a bank account, to have a job, and others as may be ensured and safeguarded by a caring guardian.
How to raise the issue in cases of “higher functioning” people:
“Everyone needs help sometimes. You are an intelligent person and you have always been really smart about coming to me to ask about things like doctor’s visits and job applications. Let’s make sure that no matter where you live or what you do, that I can always help you with things like that. And for the times when I am not available, we can make a contract with Aunt Jen to take over for me. We want to make sure that nobody else can lead you into making a mistake in those areas. Nobody else loves you as much as we do!” Regardless of ability level, everyone dealing with autism needs to fully investigate the various options and safeguards of guardianship?
VACCINATIONS AND AUTISM
Note About Vaccine News Items
Autism-Pittsburgh staff had the following editorial published In the Pittsburgh Post-Gazette on February 20, 2009:
Autism Advocates are not anti-vaccine.
We take issue with this quote in the Post Gazette article “Autism, vaccine debate not over for some,” published on Saturday, February 14th, 2009: “It would be nice if autism advocacy organizations actually advocated for children with autism,” Dr. Offit said. “Instead, they are anti-vaccine organizations….”
The Autism-Pittsburgh strongly advocates for all living with autism – families, professionals, and adults on the spectrum, and has done so since 1967. Money raised in Pittsburgh stays here to support advocacy, newsletter, parent and professional supports, and training activities.
We held two informational meetings plus one parent/professional training mini-conference. In July we’ll educate over 90 children with autism spectrum disorders in the S.P.E.A.K. summer school program. We are there for our people.
We have never been anti-vaccine and never will be. We are however anti-mass vaccinations and against inclusion of substances in vaccines that are empirically suspect in triggering onset of autism symptoms. We will continue to battle the Offit’s and the pharmaceutical lobby and press for genuinely independent, peer-reviewed research to determine the extent to which vaccine content and practice do or do not cause autism.
Regardless of “disability politics,” treatment fads or other factors, we will continue to be there for our autism “family.” If you would like to be on our mailing and email lists, or have any question about an autism issue in your life, please contact us at 412.856.7223 or email email@example.com.
Daniel Torisky, President Emeritus
Note to parents old enough to remember…
Our chapter’s current position on vaccines is consistent with the original, research policy of the Autism Society of America, held since its founding in 1965, namely to determine truths about autism. The prevailing “truth” at the time, perhaps the most damaging theory held about any disability or disorder in history, was that frigid, dysfunctional mothers caused autism. The pressure of thousands of intuitive parents, led by ASA founder Dr. Bernard Rimland, resulted in independent research that completely debunked the absurd notion of blaming the mother, and opened the door to ongoing studies and approaches, unfettered by bias, addressing the realities of this complex neurological disorder.
Has This Ever Happened to You?
Certainly you are reading this because you have an interest in autism. Most likely you are a family member struggling with the disorder. Perhaps you yourself have an infant or a relative does. You naturally are concerned about the big V – vaccines – and their potential influence on the development of autism.
A parent has called our office several times to discuss “what to do about vaccines regarding their infant son whose uncle has autism. The parents wish to break up vaccines, spacing them out and delaying the hepatitis B until at least age 3. Mom took her baby to the pediatrician last week, and was facing 4 jabs (DTaP, Hep B, HIB and chicken pox). She requested just one, the DTaP, already a combination of 3 vaccines, be administered that day. She received instead a lecture from the nurse (“Do you want your son to get hepatitis B as a baby?”) and a denial of ANY vaccines that day. Hepatitis B is spread mainly through blood-blood transmission, occurring mainly with the following behaviors including: sexual activity with infected person, shared use of needles, getting tattoos with contaminated instruments, and sharing toothbrushes or razors of infected persons. He was denied the more critical pertussis and tetanus vaccine as a … punishment?
Those who have hepatitis B in their households – although this is not always evident – should have access to early vaccines. Any parent with concerns should have the choice to vaccinate or not. It is our stance that all parents should have options, period. Yet we as an advocacy organization are without a physician referral list we can publish.
No Healthcare for You!
Following this argumentative and aversive visit to the doctor’s office, witnessed by her 5-year-old daughter, mom got a letter from the office manager. She was told that her family is no longer welcome In the practice. Since then she and her husband have been on the hunt for a doctor who will appreciate the higher risk her children face and one who will vaccinate according to good judgment – as opposed to – a generic CDC schedule that ignores increasing data from solid research suggesting we need to be more cautious in our vaccine approach. Some children with underlying conditions experience adverse effects from multiple vaccines given together. Families need options.
America struggles to provide health care coverage for all, yet In many cases where the family has adequate insurance, they can STILL be denied this basic civil right based on a “policy” developed in a medical practice by doctors who are not health policy experts. Their chief concern? Eliminating the chance of having an “under”-vaccinated child in their waiting room near other patients. In this case, preventing a very young child at low risk of contracting the hard-to-get hepatitis B, playing near children who have been vaccinated. So they just eliminated the patient. Wash hands. Done deal.
These Parents are Not Crazy
Recently, Carolyn Gallagher and Melody Goodman of the Graduate Program in Public Health at Stony Brook University Medical Center, NY, wrote in the Annals of Epidemiology that “Boys who received the hepatitis B vaccine during the first month of life had 2.94 greater odds for ASD compared to later- or unvaccinated boys.” This conclusion was reached by the authors who used U.S. probability samples from National Health lnterview Survey (NHIS) 1997-2002 datasets. They conclude: “Findings suggest that U.S. male neonates vaccinated with hepatitis B vaccine had a 3-fold greater risk of ASD; risk was greatest for non-white boys.”
With an existing autism diagnosis in the family, parents are naturally cautious, and right to be scrupulous, about what they put into their children’s bodies. Reasonable parents desiring delayed vaccines (not demanding to be vaccine free!) are acting in their children’s best interests. Yet they are often treated like uneducated hysterics who should just follow current (and often under-supported) trends dictating additional new vaccines in increasing numbers every couple of years.
How Many Vaccinations is Too Many?
Currently babies under the age of 2 receive 35 vaccinations, up from 6-8 in 1990. What is the threshold for even the healthiest, low-risk baby, if there Is such a child? 36? 46? 99? The truth is, and you can ask your own pediatrician, “Nobody knows.”
What is a family to do?
If you have difficulty finding a flexible pediatrician, ask other families living with autism who their doctors are.
Go on chat boards, resource listings. and call advocacy organizations, like ours, and find out by word of mouth. While our community can be at times diverse in opinions about treatments, life plans, interventions, diets and the like, it is also getting stronger, more knowledgeable and more outspoken about getting each person with autism what they deserve – the best quality in services and interventions. We can help each other, and that help could be just a phone call away.
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The Autism-Pittsburgh, Inc. is recognized by Guidestar as a non-profit organization. Our Bridge # is 1371707968. Our Objective is to improve the lives of those struggling with autism and to help autism involved parents, families and professionals grow by providing as much relevant information on autism spectrum disorders as is known to us.