A Resource For Families Whose Son or Daughter Is Newly Diagnosed
So Your Child’s Just Been Diagnosed…..Now What?
When your child is diagnosed with an autism spectrum condition, the family begins on an unexpected journey. The future appears uncertain and scary. Filtering through all the information and misinformation out there can be intimidating and overwhelming. There will be various professionals, complex terminology, and huge amounts of information, opinions, and options for you to consider. You will experience various emotions such as fear, grief, denial, guilt, anger, sadness, and at times those feelings will take over. You will even move back and forth through those emotions in no particular order and when you think you are through one, you may go back and experience it yet again when something else comes up in your child’s life.
The purpose of this pamphlet is to help your family get started in the right direction with the support and information you need to move forward in your journey.
All of these conditions are characterized by varying degrees of impairment in communication skills, social interactions, and restricted, repetitive, and stereotyped patterns of behaviors.
Your son or daughter has probably received a diagnosis or is being evaluated for Autistic Condition (Disorder), Asperger’s Condition (Disorder), or Pervasive Developmental Condition (Disorder) Not Otherwise Specified (PDDNOS). Although Rett’s Disorder and Childhood Disintegrative Disorder are often times associated with ASC’s they have different patterns of development and challenges than ASC’s. I will define them but we will mainly focus on the first three.
AUTISTIC CONDTION (known as AUTISM):
Characterized by difficulties in communication, social interaction, and imaginative play, and also has the presence of restricted interests and activities prior to the age of 3. A child with Autism develops both receptive and expressive communication in a different fashion. Frequently there is a delay or a severe lack of development of spoken language. In some children, language develops appropriately and then seems to stop suddenly before the age of 3. The higher functioning the child with Autism may develop elaborate language but have a hard time initiating and sustaining a conversation. Some children may repeat what they hear from other people, television, or videos. This is referred to as echolalia.
Your child with Autism may appear uninterested in other children and may appear more comfortable in his/her “own world.” Play may consist of solitary activities not involving others. Play “routines” may be repeated over and over with little variation. There may be a lack of or unusual eye contact, limited facial expressions including a “social” smile, and delayed sharing and enjoyment with others. (For example, pointing to or bringing/showing objects of interest to others.)
These children may engage in the same movement (Like hand flapping, rocking, etc.) repeatedly or may only play with certain toys or items. Often the items are not used in an appropriate fashion.(For example, instead of rolling a truck on the ground, the child spins the truck wheels for long periods of time.)
Individuals experience the same characteristics of Autism, but according to the diagnostic criteria, have no clinically significant delay in language. Measured intelligence is in the average to above average range. Frequently children show almost an obsessive interest(s) that is unusual in intensity and focus, and may make them appear to be a “little professor.” For example, your child may be intensely focused on trains, facts about dinosaurs, or maps.
Your child may be interested in having friends, but may not know how to interact with peers. Your child may not seem to understand the unwritten rules of friendship and how to “fit in.” There are often significant problems understanding the thoughts and feelings of others, understanding how to deal with others’ feelings, and regulating social interaction and their own emotions.
PERVASIVE DEVELOPMENTAL CONDITION (PDD-NOS):
Diagnostic label given when a child does not meet the criteria for a specific diagnosis but there are severe and pervasive difficulties in social and communication behaviors.
Rett syndrome is relatively rare, affecting almost exclusively females. After a period of normal development, sometime between 6 to 18 months, autism-like symptoms begin to appear. The little girl’s mental and social development regress-she no longer responds to her parents and pulls way from any social contact. If she has been talking, she stops; she cannot control her feet; she wrings her hands. Some of the problems associated with Rett’s syndrome can be treated. Physical, Occupational, and Speech Therapy can help with problems of coordination, movement, and speech.
Scientists sponsored by the National Institute of Child Health and Human Development have discovered that a mutation in the sequence of a single gene can cause Rett’s syndrome.
CHILDHOOD DISINTERGRATIVE DISORDER:
Very few children who have an autism spectrum condition diagnosis meet the criteria for CDD. CDD is a very rare form of ASC. It has a very strong male preponderance. Symptoms may appear by age 2, but the average of onset is between 3 and 4 years. Until this time the child has age-appropriate skills in communication and social relationships. The long period of normal development before regression helps differentiate CDD from Rett Syndrome.
The loss of such skills as vocabulary are more dramatic in CDD than they are in classical autism. The diagnosis requires extensive and pronounced losses involving motor, language, and social skills. CDD is also accompanied by loss of bowel and bladder control and oftentimes seizures and a very low IQ.
GENERAL INFORMATION CONSERNING ASC
The earlier a child is diagnosed, the sooner the child can be helped through treatment interventions and the better the outcome.
All children with an ASC demonstrate deficits in 1) social interaction, 2) verbal and nonverbal communications, and 3) repetitive behaviors or interests. In addition, they will often have unusual responses to sensory experiences such as certain sounds or the way objects look. Each of these symptoms runs the gamut from mild to severe. They will present in each child differently. For instance, a child may have little trouble learning to read, but exhibit extremely poor social interaction. Each child displays communication, social, and behavioral patterns that are individual but fit into the overall diagnosis of ASC.
Autism is referred to as a spectrum condition to signify differences among a group of people who share a common diagnosis. Even though individuals diagnosed with an ASC share a common set of behavioral characteristics, no two individuals will be alike. Each can act very differently from another and have varying skills.
Although not part of the diagnostic criteria, the majority of people on the spectrum experience sensory processing difficulties also known as Sensory Integration Disorder or Dysfunction. Individuals with this disorder frequently perceive sensory information such as sounds, smells, textures, tastes, and sights differently. Your child may show an over (hyper) reaction or under (hypo) reaction to various sensory input. For example certain sounds like fire alarms, vacuums, sirens, may be painful for the individual or particular smells like perfumes, potpourri can be overly distracting. Various types of lighting like fluorescent may be visually painful for the individual making it hard for them to focus on the tasks they’re given. Some may only eat certain foods because of the textures or taste, while others show no reaction at all to painful stimuli or circumstances like ear infection, broken bones, or burns.
There is still little awareness of movement differences sometimes seen with those on the spectrum. Your child may have difficulties in controlling a variety of movements such as starting, stopping, continuing, and switching. This movement difference can affect many areas of functioning. Responding to requests, participating in group activities with others, and even getting to the bathroom in time may be affected by a movement difference. Often these movement differences are mislabeled as deliberate misbehavior when that is truly not the case.
Some children exhibit challenging behaviors. These behaviors may include self-injurious behaviors SIB, aggression, self-stimulation, refusal to follow directions, withdrawal, and others. Realize that these behaviors may be serving a real purpose for your child or may be a reflection of other issues in your child’s life. It will be important to involve professionals who understand how to assess behavior, and how to work collaboratively with others in establishing a behavioral intervention plan that is realistic within the context of home and other settings.
An initial diagnosis can e made by a clinical psychologist and/or medical doctor who has had training and some experience in understanding ASC’s and other developmental disabilities. Once that initial diagnosis is made, it will be helpful to obtain a multidisciplinary assessment that includes a psychologist, pediatrician, social worker, occupational therapist, physical therapist, speech therapist, developmental therapist, family members, and other professionals to make sure your child received an accurate diagnosis.
After an appropriate assessment, a speech language pathologist can make recommendations for treatment/therapy that can be delivered and/or supervised by a qualified SLP.
If your child seems to be exhibiting sensory processing difficulties, it would be appropriate to have an assessment performed by a qualified occupational therapist OT. Often times occupational therapists have the necessary training to assess individuals for sensory processing difficulties. If therapy/treatment is recommended, a qualified OT professional should deliver and/or supervise the sensory integration program.
Other medical professionals including the neurologist, psychiatrist, or pediatrician should be involved when there are issues relating to medication and to assess for potential neurological, genetic, or physical difficulties like seizures, brain lesions, Fragile X, allergies, digestive problems, etc. Other team members who might be involved include the social worker, physical therapist, a recreation therapist, and/or an audiologist.
Some parents are finding that their children also have chronic gastrointestinal difficulties, diminished immune systems (like chronic ear infections), and altered body chemistry (like excessive metals). While these things are not directly related to autism or any ASC’s, they sometimes go “hand in hand.” While there are some controversy about various approaches associated with these difficulties, clearly children cannot learn as well if they are not healthy. If you believe that your child may have one or any of these it will be helpful to access a health care professional who is licensed, qualified, and willing to address these challenges.
If your child is between the ages of 0-2 (under age 3), you should contact your local early intervention service like Quality Life Concepts QLC. A coordinator will set up an assessment to determine your child’s eligibility. If your child is over the age of 3, then an educational assessment and diagnosis can be requested from your local school district. School districts employ psychologists and other professionals who can assess school aged children. An educational assessment will determine your child’s eligibility for a special education and related services. A “medical diagnosis” from a physician does not necessarily mean a qualification for your child. An educator should be involved in the assessment to address your child’s performance in the school curriculum and to determine if additional educational support is needed. Contact your local school district about obtaining an educational evaluation. This evaluation is conducted at no cost to parents.
Some children are not diagnosed until later in life. They may have been undiagnosed or misdiagnosed before obtaining an accurate diagnosis. You may have continued to ask questions and looked for answers when told there was no problem or that your child would outgrow any difficulties or differences. You, your child, and those interacting with your child may have experienced confusion, frustration, and misunderstanding. When a child has other disabilities or fewer behavioral characteristics, obtaining an accurate diagnosis may take longer. Issues that some children diagnosed at an older age face are low self esteem, anxiety, and/or depression due to a prolonged pattern of misunderstandings, failures, and not receiving the proper support. These issues can be treated with the help of a qualified professional. When an accurate diagnosis finally occurs, pieces of your child’s past that did not make sense may finally have an explanation.
Remember that there is no medical test for autism. While professionals can suggest, based on observation, that your child may have an ASC, an accurate diagnosis requires an appropriate and thorough assessment.
CAUSES AND ASSOCIATED FACTORS
There is no single known cause for ASC’s. There are many theories about potential causes. As research continues, it appears there are multiple factors involved. Current research points to genetics as there seems to be a strong genetic component to the condition. Regardless of the cause, we know that autism spectrum conditions are neurologically based, and not emotional or behavioral disorders. Most important, parents do not cause their child(ren) to have autism.
In the past few years there has been public interest in a theory that suggested a link between the use of thimerosal, a mercury-based preservative used n the measles-mumps-rubella MMR vaccine and autism. Although mercury is no longer found in childhood vaccines in the United States, some parents still have concerns about vaccines. Many well-done, large scale studies have now been done that have failed to show a link between thimerosal and autism. A panel from the Institute of Medicine has been completed and shows No link between the MMR or other vaccines and ASC’s.
Because of it’s relatively inaccessibility, scientists have only recently been able to study the brain systematically. But with the emergence of new brain imaging tools-computerized tomography CT, positron emission tomography PET, single photon emission computed tomography SPECT, and magnetic resonance imaging MRI, study of the structure and the functioning of the brain can be done. With the aid of modern technology and the new availability of both normal and autistic tissue samples due to postmortem studies researchers have been able to discover that the autistic brain functions differently than the no autistic brain and contains more white matter.
Postmortem and MRI studies have shown that major brain structures are implicated in autism. This includes the cerebellum, cerebral cortex, limbic system, corpus callosum, basal ganglia, and brain stem. Other research is focusing on the role of the neurotransmitters such as serotonin, dopamine, and epinephrine.
Research into the causes of ASC’s is being fueled by other recent developments. Evidence points to genetic factors playing a prominent role in the causes for ASC. Twin and family studies have suggested an underlying genetic vulnerability to ASC. The Autism Tissue Program (http://www.brainbank.org/), supported by the Autism Society of America Foundation, the Medical Investigation of Neurodevelopmental Disorders MIND, Institute at the University of California, Davis, and the National Alliance for Autism Research. This program is aided by a grant to the Harvard Brain and Tissue Resource Center (http://www.brainbank.mclean.org/), funded by the National Institute of Mental Health NIMH and the National Institute of Neurological Disorders and Stroke NINDS. Studies of the postmortem brain with imaging methods will help us learn why some brains are large, how the limbic system develops, and how the brain changes as it ages. Tissue samples can be stained and will show which neurotransmitters are being made in the cells and how they are transported and released to other cells. By focusing on specific brain regions and neurotransmitters, it will become easier to identify susceptibility genes.
There has been much written recently about the supposed “recovery” from autism that some people alleged to have made, or to have caused in children. Usually these people are those that sell some sort of treatment program, or else they are parents or autistic people that wish so very much for the autism to be gone that they blind themselves to the truth, and exist in a state of denial. Though these people love to “debunk” the “one an autistic, always an autistic” truism, the fact is that autism IS a lifetime condition and you DO NOT recover from autism. That does not mean that significant improvement is not possible, or that there is no hope. Quite the contrary, in fact; if there is one thing to be learned it is that there is always hope.
Whatever the cause of autism, it appears to be a condition that starts in the womb or prenatally. There have been many discoveries of differences in the autistic brain which can ONLY happen in the womb while the child is still developing. The fact that autism is often unnoticed until around eighteen months or more, but that does Not mean it was not there previously. These differences in the brain are permanent; the development that goes on during this time Cannot be reversed. At the most basic level, these specific differences ARE autism. The outward signals, like hand flapping, lack of eye contact, speech impairments, social issues, et cetera, are symptoms of autism, but they are not the autism itself. Let me repeat that. The symptoms of autism like flapping, rocking, etc, are symptoms, not the actual Autism itself. Some things like the inability to speak, low IQ appear to be Neurodevelopmental problems caused by other Symptoms of autism, namely auditory processing problems. It would be inaccurate to say that these things Are autism, just as it would be incorrect to say that body aches, fever, and cough Are the flu. The flu is an infection of the influenza virus, primarily in the lungs; the aches, fever, and cough are symptoms. The difference may seem unimportant, but it is not.
To people that see Autism as a set of behaviors, it seems that autism may be curable. If the behaviors can be trained out of the child, the autism will cease to exist, Right? They seem to think that autism is a bunch of habits that have to be broken. It is Not. Autism is a brain difference, and training it tout of the tell-tale behaviors does not make it go away. It hides it…and makes the autistic individual feel depressed, broken, and even more abnormal as no matter how much they try, they cannot make the autistic brain function the same way as a nurotypical NT or “normal” persons. Those people that say they are recovered autistics, or that expensive treatment programs can sometimes “cure” autism, are missing the point. If any one of those “cured” autistics (assuming they were really autistic initially) were to be examined with an MRI or other scanning technology, the brain would show up as being autistic, not nurotypical. The autistic behaviors are signs of autism, but they in themselves are not autism.
The majority of reported cases of recovery from autism are a result of the inability to really define what autism is. People that were diagnosed as severely autistic often are not expected to ever live independently or even talk. Thus, it seems like a remarkable recovery when a “hopeless” person as such does learn to speak, to relate to others, and shows an increase in intelligence. To that person’s doctors, parents, and to himself (when he learns how “bad” he was before), it appears that there has been amazing recovery. It is very hard to tell a higher functioning autistic from a lower functioning autistic especially in early childhood (since many of the differences in function level relate to development that take place in later childhood.) IQ tests that attempt to measure the abilities of nonverbal children are such a joke, and not a funny one. The child that goes from “no hope” to a higher level of functioning seems to be recovered, but that is Not the case. These people still have autistic brains, though, and although the signs are more subtle, they are still present. In the later years, the still-autistic child can be trained to emulate or mimic a nurotypical person, but that does not mean he is one.
There are many tales of parents claiming to have cured their autistic children especially on the internet. Since parents think that autism is a set of undesirable behaviors, they believe that training the child to act more normally (or in accordance to NT neurology, not his own way) is the same as curing autism. Those kids are not cured, they are trained seals. They are as autistic as they ever were living behind a mask that was forced upon them by un-accepting parents and professionals. Autistic children can be trained to act normal, just as normal children can be trained to act autistic. If you trained a nurotypical child to act autistic would that child really be autistic? Of course not. And in the very same way, it is impossible to remove the autism by training it away. The autism is still there, hidden under the normal-like concealing behaviors that were drilled into the child’s mind.
When social demands on the “recovered” child increase, it will be evident that the autism is still there. Some bewildered parents have said “We don’t understand, how can this be, we cured this ages ago!” They see it as a relapse, but it is not. Puberty and increasing social demands make the autism appear to come back. Some autistics are even able to make it to adulthood before the pressure and demands get to them and the autistic behaviors make their way back. Eye contact, body language, and other things like that are forms of communication and autistics do not have the wiring in the brain to communicate that way. Sure, they can fake eye contact but they still do not communicate with eye contact. They still do not know the NT person’s “code” of nonverbal communication. If they do, it is something that must be processed cognitively with a great deal of thought and effort, so much so that they cannot process what the person may be saying verbally. No matter how habitual the normal-like behaviors have become, the fact is that they are still foreign behaviors to anyone with an autistic brain, and the autistic will never be able to use them like a person for whom they are native behaviors.
The biggest single factor in determining the outcome of autistic individuals is the severity of auditory processing problems. Most, if not all, autistic individuals have these problems to some degree, but they vary greatly in severity. Those with minor problems often end up with the Asperger’s diagnosis, those with the worst processing problems may never develop receptive expressive speech, and will be thought to be mentally retarded. This is not to say that just because your child has been diagnosed with a more severe form of autism that there is no hope. Quite the contrary actually. If help can be obtained with the auditory processing problems and appropriate therapies, a child can go from severe classic autism all the way up to Asperger’s. But you must also stay realistic at the same time. Encourage your child(ren) to do their best and give them praise and make sure to set goals within their reach. If you set goals too high, you will not see the progress that they are making. To help your autistic child you will need a treatment program that will take a Neurodevelopmental approach as well.
Autism, when stripped of all the negativity is a condition where the person has more of an affinity for things or concepts than people. Absent the auditory processing problems, autistics including those with Asperger’s are often well above or right at average intelligence. Such people become inventors, scientists, engineers, entrepreneurs, and innovators, if they are permitted to use their unique abilities and not have their self-esteem crushed by the unyielding pressure normal people exert to conform and to be social. People that like to think about science and engineering rather than parties and socializing are vital for the advancement of humanity. For from being impaired or disabled, these people simply have abilities in different areas than normal people-abilities that are vital for humanity and society. As such, autistic people, and autism in general, should not be pitied or cured (as in the elimination of autism). By all means, we should help autistic children to use their senses in a useful way, which will connect them with the world and allow their speech and intelligence to develop. They will not be normal, but that is OK. Genius and greatness are abnormal, after all.
Being autistic is not like being mentally ill…it is not a disease that should be cured. Autistic people are just another equally-valid variety of human. If it would be objectionable to wish to prevent, “cure,” or defeat certain races of people, it should be equally bad to advocate those things with regard to autistics. Imagine the furor that would be caused (and rightly so) if a university attempted to do research into preventing or “curing” the black (negroid) race, for example, in order to fix the problems like sickle-cell anemia that are much more common in that group of people. If it is unacceptable to rid the world of any race, whether by eugenics or any other means, then it should be just as unacceptable to do it to autistics. Cure the problems that are genetically common within the group, eliminate the discrimination against the group, but do not try to wipe out the group.
ACCESSING SERVICES AND RESOURCES
Once a diagnosis has been made, it is important to identify needed services and resources. Each child with an ASC is different and each family and child will have different needs. Examples of services include: Intensive early intervention, Educational programs, Speech therapy, Sensory integration therapy, Physical therapy, Occupational therapy, Psychological services, Medical, Dental, Optometry services, Financial assistance whether it be respite providers or Social Security Income, Advocacy like support groups, Sibling support and education, Socialization like Play therapy and/or psychiatric, Recreation, and Employment training. In some cases, families may need assistance addressing challenging behaviors of their child. Some of the best places for information and referrals are the Autism Self Advocacy Network ASAN, Autism Society of America ASA, Support Groups in your local area, or even Facebook and Myspace have a large amounts of adults and teenagers on the Autism Spectrum that will give you advice and understanding of your child and their unique needs.
If your child is under 3, the best place to start is with an early intervention service like Quality Life Concepts QLC. If your child is over 3, your local school district can offer options in your area.
There are some treatment options including Applied Behavior Analysis, Verbal behavior Training, Greenspan’s Floor Time, Picture Exchange Communication System PECS, and PLAY therapy that have all show good results.
There is no single best treatment package for all children with an ASC. One point that most professionals agree on is that early intervention is important; another is that most individuals with an ASC respond well to highly structured, specialized programs.
Before you make the decision on your child’s course of treatment, you will want to gather as much information as possible about various options available. Learn as much as you can and don’t take the word of someone who has financial investment in the program. Look at all the options and make your decision for your child’s treatments based on your child’s needs. You may want to visit these places or therapies to see what is done and speak to someone to ask what treatments and activities they will be providing. One thing is for sure, if they tell you that their treatment or therapy will “cure” your child, turn around and walk back out of that office, because they are not valid respectable professionals who care about your or your child.
Guidelines used by the Autism Society of America include the following questions that parents must ask about potential treatments:
- Will the treatment result in harm to my child in any way shape or form? If the answer is yes, it’s best to avoid this course of treatment for the overall health of your child.
- How will failure of the treatment affect my child and my family? There is no “quick fix” to any ASC. Some treatments make huge gains, while others make minimal or no gains at all. The best course of action is to keep a journal of your child’s functioning before, during, and after treatment to see if there was any improvement whatsoever. And know that there will be progress and regress depending on environmental and emotional factors that come into play throughout your child’s development.
- Has the treatment been validated scientifically? Know that there are many experimental treatments out there that could be costly.
- Are there assessment procedures specified? You want to know exactly what they will be doing or working on with your child.
- How will the treatment be integrated into my child’s current program? Do not become so infatuated with a given treatment that functional curriculum, vocational life, and/or social skills are ignored.
The National Institute of Mental Health suggests a list of questions parents can ask when planning an intervention treatment or therapy for their child.
- How successful has the program been for other children?
- How many children have gone onto placement in a regular school and how have they performed?
- Do staff members have any training and experience in working with children and adolescents with autism?
- How are activities planned and organized?
- Are there predictable daily schedules and routines?
- How much individual attention will my child receive?
- How is progress measured? Will my child’s behavior be closely observed and recorded?
- Will my child be given tasks and rewards that are personally motivating?
- Is the environment designed to minimize distractions?
- Will the program prepare me to continue the therapy/treatment at home?
- What is the cost, time commitment, and location of the program?
- And most importantly what is your policy for misbehavior, outbursts, and meltdowns? What are the disciplinary techniques used?
As soon as a child’s diagnosis has been made, instruction should begin. Effective programs will teach early communication and social interaction skills. In children under 3, appropriate interventions usually take place in the home or a child care center. These interventions target specific deficits in learning, language, imitation, attention, motivation, compliance, and interaction. Included are behavioral methods, communication, occupational and physical therapy, along with social play interventions.
Children older than 3 usually have school based individual education programs IEP’s. The child may be in a segregated class with other autistic individuals or in an integrated class with children without disabilities for at least part of the day. Different localities may use differing methods but all should provide a structure that will help the child learn social skills and functional communication. In these programs teachers often involve parents giving useful advice in how to help their child use the skills or behaviors learned at school when they are at home.
In elementary school, the child should receive help in any skill area that is delayed and at the same time be encouraged to grow in his or her area of strength. Ideally, the curriculum should be adapted to the individual child’s needs. Many schools today have an inclusion program in which the child is in a regular classroom for most of the day, with special instruction for part of the day. The instruction should include such skills as learning how to act in social situations and in making friends. Although higher-functioning children may be able to handle more academic work, they too need help to organize tasks to avoid distractions.
During middle and high school years, instruction will begin to address such practical matters as work, community living, and recreational activities. This should include work experience, using public transportation, and learning skills that will be important in community living. Please note that the adolescent years is a time of stress and confusion and is no less so for teenagers with autism. Like all children, they need help in dealing with their building sexuality. While some behaviors improve during the teenage years, some get worse.
Increased autistic or aggressive behavior may be one way some teens express their newfound tension and confusion. The teenage years are also a time when children become more socially sensitive. At the age that most teenagers are concerned with acne, popularity, grades, and dates, teens with autism may become painfully aware that they are different from their peers. They may notice that they lack friends. And unlike their schoolmates, they aren’t dating or planning for a career. For some, the sadness that comes with such realization motivates them to learn new behaviors and acquire better social skills.
All through your child’s school years you will want to be an active parent participant in his or her education program. Collaboration between parents and educators is essential in evaluating your child’s progress.
In an effort to do everything possible to help their children, many parents continually seek new treatments. Some treatments are developed by reputable therapists or by parents of a child with an ASC. Although an Unproven treatment may help one child, it may not prove beneficial to another. To be accepted as a proven treatment, the treatment should undergo clinical trials, preferably randomized, double-blind studies, that would allow for a comparison between treatment and no treatment. Following are some of the interventions that have been reported to have been helpful for some children, but who’s safety has not been approved.
Dietary interventions like the gluten free, casein free diet has been reported by some parents as helping their child. Gluten is a casein like substance that is found in the seeds of various cereal plants-wheat, oat, rye, and barley. Casein is the principal protein in milk. Since gluten and casein are found in many of the foods we eat, following a gluten free casein free diet is difficult. But if you feel that this is the path you wish to try and take, please do not follow this diet until you consult with a qualified nutritionist who can help you navigate through the endless food possibilities and help you develop a diet that does not restrict any essential vitamins or minerals from your child’s diet. Eliminating even one nutrient from your child’s diet can have a disastrous effect on their development or even cause death. So before starting any type of diet plan, consult with a qualified nutritionist first.
A supplement that some parents feel is beneficial to their child is Vitamin B6, taken with Magnesium (which makes the vitamin more efficient). The result of the research thus far is mixed. Some not all or very little have seen improvement with this vitamin. Again consult a nutritionist so that you do not overdose your child’s vitamins. Overdosing vitamins can be just as disastrous as eliminating them.
Another treatment tried by parents was the administration of secretin, a substance approved by the FDA for a single dose normally given to aid in diagnosis of gastrointestinal problems. Some reports have shown increase in eye contact, improvement of sleep problems, language skills, and alertness, but several clinical trials have been tried and have shown no improvements between patients who received the secretin and those who received a placebo.
MEDICATIONS USED IN TREATMENT
Medications are often used to treat behavioral problems such as aggression, self-injurious behaviors, and severe tantrums/meltdowns, that keep the person with ASC from functioning more effectively at home or at school. The medications that have been developed treat similar symptoms in other disorders. Many of these medications are prescribed “off-label.” This means they have not yet been officially approved by the FDA for use in children, but the doctor prescribes them if they feel they are appropriate for your child. Some have since been approved for the FDA for use in Autistic children, but these are relatively new and long term side effects are yet to be know. Further research needs to be done to ensure not only the efficiency but the safety of psychotropic agents used in the treatment of children and adolescents, and benefits must be weighed against the risks.
A child with an ASC may not respond in the same way to a medication as a typically developing child. It is important that parents work with the doctor who has experience with children with autism. A child should be closely monitored while taking any medication. Ask the doctor about any side effects the medication may have and keep a record of how your child responds to the medication. It will be helpful to read the “patient insert” that comes with your child’s medication and keep an eye out for any signs of side effects mentioned in the insert, and contact your doctor if your child is having any side effects or complications from the medication immediately. Some people keep the patient inserts in a notebook to be used as a reference.
Some people choose to purchase a filing cabinet to store all their child’s records in. A filing cabinet will be a wise investment to store all medical information in, school records, reports, and other information that pertains to your child for instant access when files are needed or information needs to be obtained.
ADULTS WITH AN AUTISM SPECTRUM CONDITION
Many adults with an ASC, especially those with high-functioning autism or Asperger’s syndrome, are able to work successfully in mainstream jobs, have a family, and lead a relatively normal life. Nevertheless, communication and social problems often cause difficulties in many areas of life. They will continue to need encouragement and moral support in their struggle for an independent life.
Many others with an ASC are capable of employment in sheltered workshops under the supervision of managers trained in working with persons with disabilities. A nurturing environment at home, at school, and later in job training and work, helps persons with ASC continue to learn and develop throughout their lives.
The public school’s responsibility for providing services ends when the person with an ASC reaches the age of 22. The family is then faced with the challenge of finding living arrangements and employment to match the particular needs of their adult child, as well as the programs and facilities that can provide support services to achieve these goals. The best work environment for someone with an ASC is one where their area of interest is the greatest. Long before your child finishes school, you will want to search for the best programs and facilities for your young adult. If you know of other parents of ASC adults, or know any ASC adults themselves, ask them about the services available in your community. If your community has little to offer, serve as an advocate for your child and work toward the goal of improved employment services. A study done of adults with ASC’s in the UK are that 33% of adults with an ASC are married, 57% are single, and 10% are widowed/divorced/separated.
LIVING ARRANGEMENTS FOR THE ADULT WITH AN ASC
Many adults with an ASC are able to live entirely on their own. Others can live semi-independently in their own home or apartment if they have assistance with solving major problems, such as personal finances, or dealing with the government agencies that provide services to individuals with disabilities. Few will need lifelong care. This assistance can be provided by family, a professional agency, assisted living communities, group homes, or another type of provider.
Living at home.
Government funds are available for families that choose to have their adult child with ASC live at home. These programs include Supplemental Security Income SSI, Social Security Disability Insurance SSDI, Medicaid waivers, and others. Information about these programs are available from the Social Security Administration or SSA.gov. An appointment with a local SSA office is a good first step to take in understanding the programs for which the young adult is eligible. Your local City County Health Department CCHD, or Office of Public Assistance OPA, are other great resources.
Foster Homes and Skill Development Homes.
Some families open their homes to provide long term care to unrelated adults with disabilities. If the home teaches self care and housekeeping skills and arranges leisure activities, it is called a “skill-development” home.
Supervised Group Living.
Persons with disabilities frequently live in group homes or apartments staffed by professionals who help the individuals with basic needs. These often include meal preparation, housekeeping, and personal care needs. Some individuals may be able to live in an apartment or home where staff only visit a few times a week. These persons generally prepare their own meals, go to work, and conduct other daily activities on their own.
Although the trend in recent decades has been to avoid placing persons with a disability into long-term-care institutions, this alternative is still available for persons with ASC who need intensive, constant supervision. Unlike many of the institutions years ago, today’s facilities view residents as individuals with human needs and offer opportunities for recreation and simple but meaningful work. Whatever the placement be, the individual with the ASC should have the final say in where they would prefer to go, what they would like to participate in, and what services and treatments they are participating in.
ISSUES THAT MAY ACCOMPANY AN ASC “HAND IN HAND”
ASC’s can occur by themselves or in a combination with other disorders such as attention deficit hyperactivity disorder ADHD, learning disabilities LD, anxiety disorders, obsessive compulsive disorder OCD, blindness, deafness, epilepsy, mental retardation MR, downs syndrome, and even cerebral palsy. A secondary diagnosis will influence the particular characteristics or behaviors an individual displays, and the type of interventions needed. Importantly though, is that ASC is not a contributing factor with any of the following issues, but are often found together. If your pediatrician tells you that “it’s part of their autism,” go find a pediatrician who understands the differences.
Most often the issues that often accompany an ASC are:
When a child’s perceptions are accurate then they can learn from what they see, feel, hear, touch, taste, smell, etc. On the other hand, if sensory information is faulty, the child’s experiences of the world can be confusing, overwhelming, and exhausting. Many ASC children are highly attuned or even painfully sensitive to certain sounds, textures, tastes, smells, etc. Some children and even adults with ASC find the feeling of clothes touching their skin almost unbearable. Some sounds like a vacuum cleaner, a telephone, a sudden storm, even the soothing sounds of the waves lapping the beach will cause the person with sensory difficulties to cover their ears and/or scream. In ASC, the brain seems unable to balance the senses appropriately. Some ASC people are oblivious to extreme cold or pain depending on the type of sensory processing difficulty they experience. An ASC individual may fall and break an arm yet never cry, another may bash their head against a wall and not wince, but a light touch may make the person scream with alarm and pain.
Some individuals with an ASC have some degree of mental impairment. But be careful to base your assessment on that idea as just because the individual is nonverbal or seems to be in their own world a lot, they are actually listening to everything that is said around them and absorbing it all in. Many children especially recently have began to communicate when in their late teens and have been able to show that they are indeed intelligent when thought otherwise and let everyone know they did not appreciate being talked about as an invalid. When IQ testing is done, some areas may be normal while others may be especially weak. It is very difficult to get an accurate IQ of someone who has ASC.
One in four persons with ASC will develop seizures often starting in early childhood but also sometimes in adolescence. Seizures, caused by abnormal electrical activity in the brain, can produce anything from a temporary loss of consciousness (blackout), a body convulsion, unusual movements, or staring spells. Sometimes a contributing factor is lack of sleep or a high fever. An electroencephalogram EEG, recording of the electric currents developed in the brain by means of electrodes applied to the scalp, can help confirm the seizures presence. In most cases seizures can be controlled by a number of medicines called anticonvulsants.
Fragile X Syndrome.
This disorder is the most common inherited form of mental retardation. It was so named because one part of the X chromosome has a defective piece that appears pinched and fragile when under a microscope. Fragile X affects about two to five percent of people with ASC, so a referral for genetic testing is usually recommended. It is very important to have your child checked for Fragile X, especially if the parents are considering having another child. For a yet unknown reason, if a child with ASC also has Fragile X, there is a one in two chance that boys born to the same parents will have the syndrome. Other members of the family who may be contemplating having a child may also wish to check for the syndrome if it’s found in your child.
Tuberous sclerosis is a rare genetic disorder that causes benign tumors to grow in the brain as well as in other vital organs. It has a consistently strong association with ASC. One to four percent of people with ASC will also have tuberous sclerosis. An MRI and/or CAT scan can lead to diagnosis.
Many children with an ASC also seem to suffer from intestinal discrepancies. Things like diarrhea, acidic stools, constipation, intestinal cramps, and intestinal spasms. A meeting with a qualified gastrointestinologist will help you figure out what is causing your child’s problems. Sometimes it can be as simple as a food intolerance, a food allergy, or irritable bowel syndrome IBS. If your child is doubled over in pain or is having difficult or painful bowel movements, it is recommended that your child see a qualified specialist.
For some reason kids with ASC seem to have a higher incidence of allergies and asthma. If your child is getting hives or swelling after eating or being exposed to anything, a meeting with an allergist is highly recommended.
Warning if your child’s mouth, tongue, and/or throat begin to itch severely or swell, immediately take your child to the emergency room as this could be a life threatening episode called Anaphylaxis shock, where the airways or tongue swell to the point of restricting air flow. If your child is making whistling noises when breathing out or is having continuous nightly coughing fit’s a visit to a Repertory therapist or Pulminologist is a good idea for an evaluation for asthma.
Warning if your child is coughing to the point of vomiting and cannot seem to catch their breath or if their skin turns dusky colored and a bluish tinge develops around the lips, take them to the emergency room immediately as they could be having a severe asthmatic episode.
WHY ARE YOU DOING THAT?!
There are certain behavioral issues which seem to perplex parents and other adults that people on the ASC tend to exhibit. So here we are taking a chance to explain things to help for better understanding.
Stimming is a behavioral response that those with ASC exhibit. Those on the spectrum will be seen flapping their hands, rocking, head banging, biting, walking on their toes, and many more. For some stimming is a way of helping release emotional responses. If your child stimms, you will most likely see an increase in stimming when the child is happy, excited, upset, frustrated, hurt, and angry. It is not easy to control or stop doing a stim, nor should a stimming behavior be forced to stop. If you force a child to stop their stimming behavior, they cannot experience some emotional responses at all. Plus the constant urge to fight the stim, often causes the child to withdrawal even more. Stimming can be excessive at times. When stimming is excessive it usually means that there is something bothering the person with ASC. It can be something they’re thinking about, but most times it is an environmental response. If your child is excessively stimming, try looking from your child’s view point. Are they in pain? Possibly an ear infection or pulled muscle? Is there too much stimulation?
Sometimes certain light bulbs can be too much, so try dimming the room. Check noise levels. Remember that what you probably don’t hear is what the ASC person is hearing. Close your eyes and focus. Is there a fan whirring? A car idling outside? Leaves blowing around incessantly? Or perhaps a twig hitting the home? Check each of your senses for something that may be irritating the person with ASC and see if there’s a way for you to adjust it or help control.
Taking clothing off.
A person with ASC may have a sensitivity to certain clothing. It could be the tag in the clothing that is irritating, or it could be what the fabric is made out of. Even something as simple as the type of fabric softener you are using can be irritating. If your child is constantly taking their clothes off try different clothing materials and different fabric softeners until you find one that works.
Echolalia is repeating what was heard whether it be from another person, a television show, a commercial, or the radio. Echolalia is a way for the ASC person to help learn spoken language and the proper give and take of a conversation. If it’s bothering you too much to hear ask the child to speak softer or go into another room. But let them repeat, it will help them down the road with having conversations and communicating effectively.
Picky eating can be one of many factors. It can be a control factor as the child is trying to insert some independence, that’s a good thing! Or it could be a taste/texture issue. Some children have highly developed taste buds that something as simple to a hamburger to you is totally different to the ASC individual. You take a bite of the hamburger and taste the bread and the meat. A person with ASC can taste the salt, pepper, meat, any spices that may be on the meat other than the salt and pepper, the bread, and if there are any condiments they can taste each one. That’s why many with ASC do not like mixed foods and prefer to have plain items. If your child has a texture issue, you will quickly notice the difference. Certain things that touch your child’s tongue or mouth will automatically make them gag and possibly vomit. This cannot be helped at the time. Forcing a child to try and eat something that they’re adverted to will only make the aversion much worse next time. Think of someone forcing you to eat the slime off of a slug. Gross isn’t it. That’s what it feels like for some individuals with ASC to even eat mashed potatoes!
If you’re lucky you’ll never experience this one. But many parents of ASC kids do. There are mainly two reasons this behavior occurs. The first and most obvious one is that the child does not like the feel of the fecal material on his/her rear end and is trying to get it off. Another possibility is that the child feels the defecation coming out and is intrigued about what is coming out of them and is then intrigued about what this stuff feels like on their hands, then becomes what contrast this stuff makes on the walls, floors, etc. Some children will even eat their own fecal matter. The hardest thing as you as the parent is to figure out why your child is doing this behavior. If it is because they want it off of them, potty training becomes a good idea as is changing them as soon as they are dirty. If the child is intrigued by the feel of it and the contrast, a good option is to give them a lot of sensory input throughout the day so that they are not willing to pull it out of their diapers. Letting them play with mud outside (hey kids are washable!), in a sandbox with both wet and dry sand, with foam soap, or purchasing/building a sensory wall is a good investment. If your child is a fan of curiosity because it comes out and feels interesting, the only thing you can do is positive reward system. If they don’t do it they earn a prize like a sticker or gift, and if they do, no prize. A way to avert it if it is currently happening is to put zippered pajamas without feet on backwards so the child cannot take them off and get into the diaper. Other options are using tape around the diaper, but be careful not to get it on their skin, to keep the diaper on longer. There are now specialized clothing that has been developed with the zipper in the back for ASC kids that you can find online through Amazon.com or Ebay.com.
Covering the Ears.
Covering the ears is merely a way to block out excessive stimuli with noises. If there are too many noises around or it’s too loud, a person with ASC will cover their ears until it goes away.
Don’t touch me.
Just because your child may not want to be held or touched does not mean that your child does not love you or appreciate you. Some children have such sensitive sensory issues with being touched that a hug or pat on the back can feel like their skin is crawling. A kiss could make them want to throw up. With proper therapy an ASC individual can get to the point where they will allow hugs, hand holding, or kissing, but it must always be on the individuals terms. Be patient parents. Your child does love you even if you feel they cannot show it or say it.
Many ASC individuals do not sleep properly. Many have a hard time shutting their brain down to be able to settle down and go to sleep. Others just do not require the amount of sleep other people do. If your child hardly sleeps but is happy and energetic then they may just be one of those individuals that doesn’t need to sleep too much. The best things for individuals like that is by showing them a digital alarm clock and pointing out that they cannot leave their room until a set time. But allow them to get out of bed and play with items that are ok. If your child gets out of bed cranky, or is bouncing off the walls one minute and exhausted the next, or is very emotional throughout the day, it could be that they just cannot go to sleep on their own. A consultation with your pediatrician is often the best course of action and asking about an over the counter remedy called Melatonin. Melatonin is naturally produced in the human body and will help your child get into a sleep wake pattern that is beneficial for both of you. Although it is non habit forming and over the counter, the advice of a pediatrician is best to find a dosage that is appropriate for your child. Melatonin is not meant for a long term solution as you would need to keep increasing the dosage as the tolerance for it built up. ASC children really should have more than one area for sleeping options. There are times they can fall asleep in a bed with no problem, where other times they just cannot get comfortable, so if you go into their room and find them on the floor, in a toy box, or in a chair, let them be. At least they’re sleeping!
Autistic children do not normally have a sense of safety. Safety issues need to be addressed as they come up. Children in general usually do not come preinstalled with safety features. Some safety concerns that children with ASC exhibit are wandering (they do not have a sense of direction or concern about getting lost). The best course of action is to purchase a medic alert bracelet for your child with their name, condition, address, and two phone numbers of emergency contact. Car seat safety is another concern. Often times ASC children will unhook their seatbelts or get tangled in the belt. There are cases of children almost strangling to death from the safety belt. A good investment will be a specialized booster seat that you can use the five point harness longer term while you are teaching car safety. Going up to growling dogs can become an issue as an ASC child does not understand that a growling dog means it’s a dangerous dog. Supervision must be used when your child is around dogs or any other animal, as they will be very curious and may hurt the animal. Exposure to the elements can be a problem for some children as their body does not respond to stimuli as other children’s bodies do. An ASC child can over heat without realizing or can sneak outside in the snow and get frostbite or freeze to death without realizing they are even cold. Other safety concerns are the same for NT children.
Meltdowns are not a temper tantrum, although they may be mistaken for one until you get to know the difference. During a tantrum a child has complete control and is trying to manipulate you to get their way by stomping their feet, yelling at you, or throwing themselves on the floor. A Meltdown can be one of three different types. There’s the milder meltdown where the ASC person is trying to block out all sensory information. They will cover their ears, may or may not fall to the ground, may bang head against wall or floor, and may scream. The sensory input in this meltdown is too much for the person to decipher. Touching during the sensory meltdown is not a good idea unless you do not mind the possibility of getting hit. The best way to help a sensory meltdown is to get rid of as many sensory issues as possible. Dim the lights or turn them off, turn radio’s, television’s, or other sources of sounds off. Make sure there is nothing physically hurting your child, and wait for the person with ASC to be able to regulate themselves again. The severe meltdown is where the ASC person’s brain will feel like it’s actually melting. Screaming is always accompanied by this one, as are thrashing around wildly. The mind goes blank and the person will not be able to process what you are telling them at all. Sometimes there are no warnings or signs that the person with ASC is about to do this meltdown, as they don’t even know it. One moment you can be having fun together while the next your child is in a meltdown and you’re standing there wondering what happened. This meltdown will end when the ASC person tires themselves. The last of the meltdown’s are the violent meltdown. Often the person with ASC will feel a tingly sensation in the brain and they need to do large body movements. Some children may kick, hit, throw themselves against a wall, scream, tear up items, and so on.
The best treatment for this type of meltdown is holding them if possible until it is over. However never hold them in a position where they can head butt you, bite you, or kick you. Good options are rolling the ASC person in a blanket “like a burrito,” tucking a blanket around them snuggly, or sitting behind them with your legs wrapped around their legs, your right arm holding their arms, and your left arm holding their head. This is a rage that the child may be in, they will not be able to control themselves. Let them thrash in the hold or blanket until they are completely exhausted. If you let them up before the exhaustion kicks in, you may subject yourself to a hit or kick until you can grab them again. If holding or wrapping the child is not an option, the other thing you can do is have a place you can put them that is safe. Somewhere they can throw themselves against the walls and bang their head if they need. Keep some paper they are allowed to tear up in there if you can. If there are things on the walls or anything in the room, it will get broken or torn up. The person with ASC knows this meltdown is wrong, but they are helpless to stop it once it starts. It can feel like an out of body experience, when it’s reported to “be watching myself but helpless to stop.” Not all ASC persons will have all these meltdowns. Some may only have one or two, some will not have any at all. The important thing to remember here, is that while a tantrum can be stopped and is the child’s way of manipulating you, a meltdown is beyond the child’s control and cannot be stopped. It must run it’s course.
Remember that some individuals with ASC are very sensitive to their sensory input while others are completely oblivious. Some have a combination of both hypersensitive and hyposensitive. No individual is the same. Whenever your child is exhibiting a behavior that you do not like or that baffles you, make time to try and understand what the child is trying to convey to you and understand where they are coming from. Enjoy spending time with your child. Even if your child cannot yet tell you. They love you and appreciate everything that you are doing for them.
Some ideas to help you play with your child and to help your child. Let your child be your guide when working together. Watch them for cues that they don’t like an activity or that it’s too much. If your child is all into it and then drifts off into space for a moment. Don’t try and bring them back to your attention. They are just simply over stimulating and helping themselves. When they are ready they will turn back to you and be ready to play again. If the child keeps trying to leave the play. Let them. Try a different approach. Your child will let you know when they like something by smiling or squealing with delight.
Most people with ASC love deep pressure and definitely prefer it to light touch. Wrap your child up in a blanket like you did when they were born “burrito” style. Give good hugs when you hug your ASC child, but let them come to you for the hug, never force a hug when it’s not wanted.
Some people love this one, some hate it. You’ll have to discover it on your own. You can purchase the brushes at any medical supply store. They are disposable scrub brushes for surgical procedures. Start at the child’s head and brush down their entire body. If your child doesn’t like the brush, but likes the motion, massaging lotion into their skin is a great option.
These items can be purchased online at many reputable websites. The z-vibe should be used under the guidance of a speech therapist and is a great tool to help ASC children in overcoming their oral texture difficulties. The chewy tubes can be purchased for children who like to put things in their mouth, chew on nonfood items, or bite their fingers. They can be textured or smooth, scented, flavored, or plain.
Kids love bubble wrap and ASC kids are no different. Kids will like popping the bubbles, but another fun activity is to lay it out and walk over the top of it with bare feet. If your child doesn’t like the feel of it on their feet, they can wear shoes and work their way up to shoeless.
Sounds strange to some parents, but an excellent sensory based thing to do on a hot day. If you have access to an area that has a mud puddle or you can make a giant mud puddle, get on some swim suits, and then let your child direct play. They can walk in it, sit in it, rub it over yours or their bodies, etc. If your child is too afraid at first let them sit in your lap and reach out and touch it when they are ready.
Many ASC children and even some adults love to spin. Some can spin for hours without getting nauseous. Take your child in your arms and spin in circles while standing, sitting in a pool, or sitting in a chair.
Swimming is great for ASC individuals. But each person is different. Some may not like to do it. Warm pools are the best option but some are perfectly content in a cold pool. Exercise of any kind will help ASC individuals burn off some extra energy, and feel better.
HELPFUL HINTS FOR FAMILIES
- Set priorities and make a plan. Identify your top few issues and the top needs for your family and your child. Start with those issues first and then work out from there. Try not to address everything at once as you will get frustrated and may give up.
- Intensive and ongoing intervention can have a positive long-term impact on your child. In addition pursing structured programming and educational options, realize that your child is learning continually, even if you don’t see it. Be prepared to continually teach, coach, and guide your child in simple and complex learning and social situations.
- Organize information about your child. This helps when you’re involving new people and when you are problem solving. You will serve as your child’s case manager and life long advocate. Keeping organized from the start is the best and easiest way to do that.
- Take care of Your health and Yourself. I cannot stress this one enough. You need exercise, rest, laughter, and time spent away from your child doing the things you love and with your friends. Having a child with an ASC is not a death sentence but it is a life sentence. Maintain your stamina so you don’t get burnt out on your child. You owe this to yourself and to your whole family. Practice staying calm and finding humor each day. And keep working on your relationship with your own significant other and family. Sometimes significant others feel left out or don’t know what to do and marriages suffer.
- Learn ways to simplify your life and the life of your child. Establish routines and structure, but be careful not to become too rigid. Be consistent. Use visual supports in your home to clarify expectations and routines.
- Learn to be consistent with praise and positive information. Minimize negative comments and punishments. You do not want your child to feel that they are in any way defective or damaged or that they are causing you undue hardship. If you are feeling this way, it’s best to take some time away from your child. Make sure to keep discipline, don’t let your child get away with it just because they have an ASC. But don’t discipline them over things that are beyond their control.
- Work on establishing positive relationships with professionals. You will need to work closely together to resolve difficult issues. Focus your efforts on attacking problems together and not each other. A good working relationship is a productive one in which your child is the winner.
- Work with and build upon your child’s interests. Be creative. Realize that these interests and strengths may logically lead to a career in adulthood. Celebrate your child’s strengths, interests, and accomplishments.
- Be proud of the accomplishments your child achieves whether they are large or small. Small steps may be major accomplishments for your child and they lead to much bigger steps down the road. Acknowledge and celebrate them.
- Find leisure and recreational activities that all family members can enjoy together. Work with the school to teach skills that will facilitate your child’s involvement in these activities. It is good to have everyone spend some alone time from each other but it is equally important to spend quality family time together.
- Regardless of the age of your child, they will grow up and become and adult. Encourage and enhance behaviors that will help your child become more successful as an adult and do not encourage behaviors that will minimalize future opportunities. You want your child doing things for themselves and learning. It may take time for them to learn how to button that shirt, but it’s an essential skill, so be patient and let them try, encourage them, and support them with their failures and achievements.
- Don’t do it all alone, you can’t. Ask for and accept help anywhere it comes from. Some families will become very supportive and help you out with whatever you may need. Some families will disown your family and you will not know where to turn. Always ask professionals for ideas of supportive services and agencies that can lend a hand to you when you need it. You are your child’s best advocate, but do not let yourself get burnt out, and know most of all that you are not alone.
There are many myths associated with autism spectrum conditions and we hope to dispel some of those myths in this pamphlet.
Autistic’s Don’t Have Empathy.
An autistic individual does have empathy. Sometimes it takes a bit longer to develop than our nurotypical peers, but we do have empathy. We at times do not know how to respond when a nurotypical person is crying, depressed, or elated. Some of us have learned to respond “appropriately” while others of us have not mastered the appropriate response. We may try to laugh to lighten the mood, or make a joke of it. We may say something hurtful because we don’t want you to get your feelings hurt if it doesn’t work out the right way, but the important thing here is we DO feel Empathy. We’re just not good at expressing it. As parents you need to help your child express their emotions in a fashion that is right for your child and for your family.
Autistic’s Cannot Love.
This one is just awful. Imagine if people were saying the same thing about you. We can and we do feel love. This myth started because many autistics do not like to be hugged, kissed, or get all goo-goo eyed over someone they’re in love with. This does not mean that an autistic cannot feel love, we just show our love and compassion in other ways. Remember an autistic is Different Not Less.
Autistic’s Are Mentally Retarded.
Although some autistics may have mental retardation, it is Not part of being autistic. Even non verbal autistics have average to above average intelligence. Parents seem shocked when a nonverbal child suddenly starts typing things on a computer or keyboard where they thought they couldn’t even do their ABC’s yet. A nonverbal autistic has even more time on their hands to learn and to absorb information. IQ tests cannot accurately give an autistic’s intelligence. So never rely on your child’s IQ scores to let you know how well they are functioning. And always remember that even when your child seems “in their own world” and are nonverbal, they are still listening and can hear every word you say. So make sure your words about and to them are positive and not negative ones.
Autistics Can Never Live Independently or Get Married or Have Children.
Complete myth. Never let anyone tell you that the way your child functions today is the way they will function forever. As autistics grow, most will become more integrated within society and if they are given the proper supports and therapies, they have a very good chance of living on their own, marrying, and having families of their own. One of the reasons that autism seems to be on the rise, is because autistics are marrying and having large families of their own. Some may still have difficulties and need support services, while others are completely independent. Very few will need to be cared for long term if given the right supports in the beginning.
Autistics Turn Into Rapists and Violent Offenders.
Quite the contrary really. Autistic individuals usually do not like to be in the spotlight and shy away from other people. There are times that autistic individuals will get violent, but usually it is because they were in a fight or flight situation. The only reason an autistic person would get violent is if they felt they were being bullied and backed into a corner, if they were trying to convey that they are hurting either emotionally or physically, or scared. But with every group of people or race, there will be some who do criminal acts. This should never be used to define the entire set of people or race.
Autistics Are A Drain On Society.
Just as there are some nurotypical people who cannot function in society, there will be autistics that cannot function in society. Autistics actually help society because of their intense areas of interest they usually get jobs in those areas of interests and become quite good at what they do, or they invent new products and/or ideas.
Autistics Can’t Lie.
Anyone either nurotypical or autistic can learn to lie. Although lying does not come naturally to a person with an ASC. Usually in order to lie, the person with ASC must focus so hard that the lie is not believable and they cannot focus on anything else, or they end up cracking a smile. Usually the effort it takes to lie and to continue a lie is not worth it and the ASC individual will either admit to it or just not lie to begin with. You will find with the individual that will not lie, they are usually very blunt and often come off as rude when that is not the intent. Those who practice the art of “sugar coating” can often lie a bit easier, but even they still do not prefer to lie. An individual with an ASC is very literal and black and white in their thinking content. If you tell an individual with an ASC not to lie, and then discipline them for being too blunt, or tell them that they cannot tell that woman that her rear end is big, You are sending mixed messages. There is normally no grey area to an individual with ASC’s thinking. It’s either right or wrong, not in-between. The best action is to teach your child the old Bambi train of thought. “If you can’t say something nice, don’t say anything at all.” But be warned, if you ask an ASC individual for their opinion or what they think, you will get an answer you may not like! So don’t be offended when your child tells you that you have a big belly or that your belly feels like Jell-O, or tells you your butt is big. It is not the child’s intent to make you upset or angry, they are just stating what they think. Another problem people with ASC run into is to an individual with an ASC their thoughts are FACT. So even though you may not have a big rear end, to a child you do, and they will state it, and then deny that they are lying, because to them, it is a fact.
There are many more myths surrounding Autism and Autistic’s. If ever in question about something, contact an actual autistic and ask. And remember just because you met one autistic, means you only met one autistic.
Every person on the spectrum is different. Some do have similar behaviors or interests, but no two are the same.
NOTES FROM THOSE ON THE SPECTRUM, WHAT WE’D LIKE YOU TO KNOW
Many individuals prefer to remain anonymous with their information and with their statements, so out of respect for them, they will appear as anonymous.
These are their exact words. Some are diagnosed with Asperger’s, Some with High Function Autism, Some with Classic Autism, and some even with Pervasive Developmental Condition.
There’s a couple parents comments too who are seasoned in their ASC experience.
- Heather E. Sedlock (ASC Adult and Mother to ASC children) “Stay positive. If you need to vent about the frustrations of autism, don't do it around your kid. They *can* understand you even if you can't understand them. Also, keep hope. Many autistics, with or without treatment, do tend to reach milestones.. just on a different timetable than other people. So, there is always hope!”
- Karen (ASC Adult) “its going to be the most interesting rocky bumpy mindblowingly amazing ride ever - not everything to do with Autism is bad! Karen on the spectrum mother to a spectrumite :) Always deal with situations in a positive way even if you feel negative - cos the negativaty is hard for us on the spectrum to cope with and makes situations worse”
- Katherine (ASC Adult) “Try not to worry about 'losing' a child. Just focus on what you're gaining.”
- Barbara (ASC Adult) “I would tell them to encourage their children with the gifts they have from being on the spectrum. My son has a special connection with animals, is a wiz at school, can see others don't, ect.”
- Joy (ASC Adult) “Focus on what is Strong, not what is wrong.”
- Tracey (ASC Adult) “You are not alone and don't be scared to ask for advice.”
- Brooke (ASC Adult) “Asperger's isn't 'contagious' and it isn't your fault that your child/children have it…”
- Michele (Mother of child on the spectrum) “Don't forget to look after yourself in the midst of all the running around and therapy etc. Parenting is a tough gig at the best of times and add ASD to the mix and self-care becomes even more paramount. You can't give out of nothing - eventually you will crash and burn. As hard as it is try every day to eat well, drink water, do something for youself, rest/sleep as best you can (easier said than done if your child like mine is not a great sleeper). Make the effort to get out of the house (with family or alone), nurture your marriage, get some time alone as regularly as possible.Know what recharges your batteries and be sure to do it as often as possible. It doesnt have to cost money it may be something as simple as a cup of tea in a really nice cup or a hot bath or a walk along the beach. It is not being selfish - it is giving the best of you to your family. No one else is going to do it for you. You have to make YOU a priority so you can last the distance.”
- Sarah Black (ASC Adult) “I would say that we with ASD just see the world in a different way and even though we may seem like we are normal things that may come so easy to others can be really tough to us. Just to have a normal conversation can cause so much anxiety. Another I just thought of is that we may appear rude or being disobedient when we are having a melt down we just need the time to regroup and get our heads together to be able to process things normally again and communicate. When being punished for this it really effects our self essteem and how we react in the future.”
- Kimberly A. Falk (Mom of an ASC child) “In April of 2009 my then seven year old and I went to Toys R’ Us, who are strong corporate sponsors for Autism Speaks. We happily donated our dollar after our purchase and my son received a blue puzzle piece sticker. He studied the Autism Speaks sign for a long time. He then asked me what the word cure meant. I told him to cure something means to get rid of it. He said, “they want to get rid of me? Why don’t they want me at Toys R’ Us Mommy?” I felt as though my heart was falling to my knees. I realized then that autism is not a disease like small pox in need of a cure. In fact, there is no proven effective “treatment” for autism, aside from behavioral interventions. What if autism was just another culture in the increasingly diverse face of this earth? There is a new emerging subordinate group, the Autistic-American. One in every one-hundred children will be born Autistic-American this year, comprising 1.5million of the total United States population (Autism Society of Maine, 2011). Like all subordinate groups, the Autistic-Americans have, and continue to, endure many obstacles to being accepted by the dominant group of Nurotypical-Americans. The issues that Autistic-Americans face are not as different as those faced by other minorities as one might expect. Members of the community are generally accepting of their Nurotypical peers. When they hear my children are autistic, they generally respond by apologizing. They respond with xenophobia, fearing the very thought of their children playing with mine. I have heard stereotypical statements from members of the community, classifying autistics as crazy, head banging, screeching, animals. Or others have assumed that my children must have some hidden savant skill like the movie Rain Man, when in actuality, savants are extremely rare. My youngest son experienced expulsion when I was asked not to bring him to church anymore because of his quirky behavior, like rocking, that might scare the other children. I interviewed my neighbor, who is a Behavioral Health Professional (BHP). As a paraprofessional working with children with autism, she has seen firsthand the effects of prejudice on Autistic-Americans. She described looks of disgust, rude comments, name-calling, as well as bullying in the school against the child she supported and views relations of diversity in our local community as un-accepting and cold towards those who are different (M Crommit, personal communication, April 7, 2011). Politically, we are starting to be represented. There are no Autistic-Americans in political positions, however, groups like the Autism Society of Maine do advocate for the needs of Autistic-Americans by petitioning policy-makers on the issues affecting Autistic-Americans. One bill that they are petitioning for is Bill LD #28 that would amend MaineCare benefits to remove any language that restricts the number of workers with intellectual disabilities or autism at a work location (Autism Society of Maine, 2011). This will enable Autistic-Americans to build a stronghold in the labor force and contribute to their communities. I am a part of a group called Embracing Autism. It was brought to the group’s attention that none of the local media had provided coverage for the many Autism Awareness Month activities in the area, like the Portland Pirates and Sea Dogs games, the Autism Playgroup, or just the acknowledgement of the month itself. The moderator for the group spoke with the managers of these media companies about their oversight and these stories were covered as an afterthought. Had she not pursued this, the stories would not have been covered at all. The local media was not diligent in representing Autistic-Americans. It is difficult to find a local news story about discrimination against Autistic-Americans, though I know from my personal experiences that it exists. I came across a story in which a restaurant owner told a mother of an Autistic-American, “I can’t believe you take him out in public. You must be the only one who does that” when the woman explained that her child had autism (Winitz, M. 2010). Again, the Autistic-American faced xenophobia and expulsion. In addition, I found dozens of stories where children were denied access to their service dogs by school officials, one where a little girl needed the dog to keep her safe (Garland, J. 2010). This ties in with the conflict theory where the dominant group feels that this deviation from the norm is bad, creating a struggle between the Autistic-American and the dominant group. Services for Autistic-Americans are generally guaranteed by law. There are laws against discrimination, but the covert discrimination is hard to prove. The very services that are guaranteed provide an environment of seclusion, rather than immersion. Autism programs are usually autism-only. This means that Autistic-Americans and Nurotypical-Americans are not given enough opportunities to connect and build relationships. According to the Contact Hypothesis, contact between these two groups will reduce prejudice and foster pluralism, the mutual respect between these neuroally diverse groups. The most beneficial change to combat prejudice against Autistic-Americans is to stop looking at autism like a disease in need of a cure. Autism is not a mental illness either, even though it is “diagnosed” using the Diagnostic Statistics Manual IV. Nurotypical need to be educated that Autistic-Americans are not diseased or mentally ill to remove the stigma associated with being autistic. Stigma is what fueled the genocide of millions of Jews in Germany under Hitler’s rule when he proclaimed the Jews as less than human and tortured many children with medical experiments in the name of science. Nurotypical are guilty of Hitler’s sins against humanity when they put Autistic-American children through painful “treatments” like chelation, hyperbaric chamber, and deprivation diets in an attempt to cure someone who is not diseased. Chelation has been responsible for many deaths of Autistic-American children. We cannot even begin to accept Autistic-Americans as people, equals as citizens and deserving of respect, until we stop looking at them like they are sick. Only then will we be able to introduce neurodiversity as the new cultural diversity training in our community, where people accept that others have a different way of thinking, feeling, communicating, and perceiving the world.”
- Richard (ASC Adult) “People with ASD’s need to be loved and accepted not to be rejected. We are honest and loyal to our friends and relationship partners. The divorce/seperation rate among us are much better. A nurotypical and a nurotypical rate is 50%, a nurotypical with someone with an ASD are 50-80%, but someone with ASD with someone else with an ASD is only 10%. nt+nt = 50%(because 1/2 of nt marriages break up because of money, cheating, etc), nt=asd = 50-80%(because the nt partner cannot take the asd partners emotional coldness, desire to be alone, etc), asd+asd=10% (because they both have asd's and both have a good idea of each others issues that makes the odds of compatibility much more likely)”
- Christy Pedraza (ASC Adult and Mother to ASC children) “Trust yourself and your instincts and trust your child. Instead of pushing your child so much to learn your language, take the time to learn Their language. Every single action that your child does, is a way of speaking to you. Don’t get frustrated, don’t get overwhelmed, take your time to learn and experience the beauty of your own child and the amazing person they are.”
Tactile defensive child;
Out of Sync Child, Out of Sync Child Has Fun;
Advance for Nurse Practitioners;
Child Restraints for Children with Special Needs;
The Truth of The Myth of The Lack of Recovery From Autism;
Addendum to Autism Spectrum Disorders;
Autism Society of America, Take Me Home;
Department of Health and Human Services;
National Institute of Mental Health;
The Indiana Resource Center for Autism, Indiana Institute on Disability;
Service Guidelines for Individuals with Autism Spectrum Disorder/Pervasive Developmental Disorder; American Psychiatric Association, Diagnostic and statistical manual of mental disorders: DSM-IV-TR (fourth edition with text revision);
Journal of Autism and Developmental disorders;
Autism and Tuberous Sclerosis, Journal of Autism and Developmental Disorders;
Journal of the American Academy of Child and Adolescent Psychiatry;
British Journal of Psychiatry;
Asperger’s Syndrome: A Guide for Parents and Professionals;
Autism; Revised Journal of the American Academy of Child and Adolescent Psychiatry;
Mental Health: A Report of the Surgeon General;
American Journal on Mental Retardation;
Medical Journal of Australia; Pediatrics; Biomedical and Dietary Treatments (Fact Sheet);
Journal of Clinical Psychiatry;
New England Journal of Medicine;
JAMA; Development and Psychopathology;
Neurobiology of Disease;
Easter Seals Disability Services;
Audrey Peirce-Seeley P.L.A.Y. Consultant; Powers MD. What is Autism?;
Children With Autism: A Parent’s Guide, Second Edition;
2006 Safe Ride News Publications;
University of Rochester School of Nursing, Pediatrics, University of Rochester School of Medicine and Dentistry;
Autism Spectrum Risk Management for Persons with Autism, their Families and People that Care;
Autism, Advocates and Law Enforcement Professionals: Recognizing and Reducing Risk Situations for People with Autism Spectrum Disorders;
Asperger’s Syndrome Education Network;
Autism Spectrum Risk and Safety;
Online Asperger’s Syndrome Information and Support;
Fight Autism Now; Heather Sedlock; Sarah Black; Christy Pedraza; Kimberly A. Falk; and thanks to Many adult and teenage individuals on the Autism Spectrum themselves; Autism Society of Maine .(2011). About autism; Autism Society of Maine. (2011). Legislative tracking sheet: Current LD bills; Garland, Jaime. (2010). Service dog denied at York County elementary school. Fox 43 News; Schaefer, R. T. (2006). Racial and ethnic groups (10th ed.). Upper Saddle River, NJ: Pearson Prentice Hall; Winitz, Max. (2010). Eatery’s “no screaming kids” policy sparks controversy; Fox News; Disabled World; Natural Variation. *Recommended books - 10 Things that Every Child with Autism Wants You To Know, Nobody’s Perfect.* Written by Christy Pedraza. No editing or adding information without written consent. Copying and Distributing is allowed and encouraged.
Here are 12 hints that we hope will help you on your journey. Hopefully you now have a starting point.
Characteristics Of Autism Spectrum Conditions
So Your Child is Diagnosed With An Autism Spectrum Disorder?
Or As We Like to Call It, An Autism Spectrum Condition…