Autism is a term that refers to a collection of developmental disorders that affect the brain. This brain disorder affects a person’s ability to communicate, form relationships with others, and respond appropriately to the external world. People with autism have a tendency to have repetitive behaviors or interests and rigid patterns of thinking.
The severity of autism varies greatly. Some people with autism can function at a relatively high level, with speech and intelligence intact. Others have serious cognitive impairments and language delays; some never speak.
What is Medicare?
The Medicare program was created by Title XVIII of the Social Security Act. The program, which went into effect in 1966, was first administered by the Social Security Administration. In 1977, the Medicare program was transferred to the newly created Health Care Financing Administration (HCFA). HCFA has been renamed and is now called the Centers for Medicare and Medicaid Services (CMS).
The CMS is a federal agency within the U.S. Department of Health and Human Services. CMS runs, among other programs, the Medicare and Medicaid programs, which are the two national health care programs that benefit more than 75 million Americans.
Medicare benefits are divided into two parts, creatively named Part A and Part B. Part A is called the hospital insurance program and it is funded by Social Securitytaxes. As one might expect from the name, Part A benefits pay for basic in-hospital services, extended care services, services provided in skilled nursing facilities, home health services, and hospice care for terminally ill patients.While in the hospital, the services covered include a semiprivate room, all meals, nursing services, hospital services, and supplies as well as the cost of inpatient mental health care with a lifetime limit of 190 days. Part A benefits are provided to eligible individuals at no personal expense.
Part B benefits help to pay for the costs of doctors’ services, including office visits, but not routine physical exams. Medicare also covers outpatient medical and surgical services and supplies, any diagnostic tests, facility fees associated with approved procedures performed in an ambulatory surgery center, durable medical equipment (such as wheelchairs, walkers, etc.), second surgical opinions, outpatient mental health care, and outpatient occupational, physical, and speech therapy. Some Medicare coverage is available for approved medications.
What is Medicaid?
Medicaid is a national health insurance program aimed at serving the poor and the needy. All 50 states, the District of Columbia, Guam, Puerto Rico, and the U.S. Virgin Islands operate Medicaid plans. Medicaid was created by Title XIX of the Social Security Act and is part of the federal and state welfare system. Statewelfare or health departments usually operate the
Medicaid program, within the guidelines issued by the CMS. The Medicaid program is funded by the general tax revenues of the federal and state governments. Persons covered by the Medicaid program have no out-ofpocket expenses for coverage.
Though Medicaid expenses can vary from state to state, the program must furnish the following services that are federally mandated:
Inpatient hospital care
Skilled nursing home services for adults
Laboratory and X-ray services
Family planning services
Early and periodic screening diagnosis and treatment for children under age 21
The eligibility requirements for Medicaid benefits are set by each state, although the CMS has set some minimum standards. The people who are eligible under these standards include the categorically needy and the medically needy.
The categorically needy are a group that includes families and certain children who qualify for public assistance. Therefore, they are eligible for Aid to Families with Dependent Children (AFDC) or Supplemental Security Income (SSI). Common examples of eligible persons include the aged, the blind, the physically or mentally disabled, and children. The medically needy comprise a group who earn enough to meet their basic needs, but have inadequate resources to pay health care bills.
Is my autistic child eligible for Medicare or Medicaid benefits?
Your child can get Medicare coverage, but not immediately. Medicare is a federal health insurance program that was designed for people who are 65 or older and for people who have been getting Social Security disability benefits for at least 2 years.
Since children, even those with disabilities, do not get Social Security disability benefits until they turn 18, no child can get Medicare coverage until he or she is 20 years old.
The only exception to this rule is for children with chronic renal disease who need a kidney transplant or maintenance dialysis. Children with chronic renal disease can get Medicare if a parent is getting Social Security or has worked enough to be covered by Social Security.
Medicaid, by contrast, is a health care program for people with low incomes and limited assets. In most states, children who get SSI benefits qualify for Medicaid. In many states, Medicaid comes automatically with SSI eligibility. In other states, you must sign up for it. Some children can get Medicaid coverage even if they don’t qualify for SSI. Check with your local Social Security office or your state or county social services office for more information.
What other health care services are available for my child?
State Children’s Health Insurance Program (CHIP): Legislation passed in 1997 created a new Title XXI of the Social Security Act, known as the State Children’sHealth Insurance Program (CHIP). This program enables states to insure children from working families with incomes too high to qualify for Medicaid, but too low to afford private health insurance. The program provides protection for prescription drugs and vision, hearing, and mental health services and is available in all 50 states and the District of Columbia.
Your state Medicaid agency can provide more information about CHIP.
If your child is disabled and is found to be eligible for SSI, he or she can be referred for health care services under the Children with Special Health Care Needs (CSHCN) provisions of the Social Security Act. These programs are generally administered through state health agencies.
Although there are differences from state to state, most CSHCN programs help provide specialized services through arrangements with clinics, private offices, hospital-based out- and inpatient treatment centers, or community agencies.
CSHCN programs are known in the states by a variety of names, including Children’s Special Health Services, Children’s Medical Services, and Handicapped Children’s Program. Even if your child is not eligible for SSI, a CSHCN program may be able to help you. Local health departments, social services offices, or hospitals should be able to help you contact your CSHCN program.
Family Reimbursement Programs: These programs provide reimbursement for services not covered underother means such as Medicaid. Services reimbursed may include respite, camps, educational materials, therapies, and the like. Contact the Developmental Disabilities Council in your state for more information.
Medicare - Title XVIII of the federal Social Security Act and 42 CFR 405 to 424; insurance-like payments for medical care of persons aged 65 and over; administered by federal Social Security Administration.
Centers for Medicare and Medicaid Services (CMS) - Formerly the Health Care Financing Administration; in the U.S.Department of Health and Human Services; the federal agency charged with overseeing and approving states’ implementation and administration of the Medicaid program.
I want to care for my child after I’m gone, but I was told by my lawyer not to leave any money in my child’s name. Why is that?
In many states of USA, money in your child’s name can disqualify him or her from future state and federal financial aid. It may also trigger reclamation of past benefits that the child has received from the government, especially by Medicaid.
Before any money or other assets are left to your child with disabilities, you should first check with your legal or financial advisor. This may include any outright gifts of money or real estate or naming your child a direct beneficiary of your life insurance or retirement fund. If you have friends or family members who may want to give gifts to your disabled child, make sure these gifts do not result in more harm than good.
There are several ways to leave money for your child’s care without disqualifying him or her from federal benefit programs.
Why does a parent with an autistic child need a will?
An autistic child may require supervision and financial support long after a parent has died. A well-written will can guarantee that your instructions will be known and followed after your death.
To die intestate-that is, without a will-places both your assets and your disabled child at risk. Without a will, your child could suffer great financial and emotional hardship, even if you know people who want to care for him or her and you have enough assets to see to his or her financial needs after you’re gone.Without a will expressing your wishes, any of the following could occur:
The distribution of your assets would be determined by an unknown judge in a probate court. This process could take months to resolve, and rather than having your assets distributed in accordance with your wishes, they are distributed in the way the court feels is appropriate.
Your child could become a ward of the state. Courts would appoint a guardian who would be responsible for raising the child and administering any assets the child would receive from you or others.
Your child could lose Medicaid benefits; then could be reduced to poverty through Medicaid reclamation. The state could go back years and demand repayment for past benefits, taking all or a portion of your child’s inheritance.
Your child could lose future Social Security benefits.
Your adult (but disabled) offspring could be placed in charge of all your estate’s assets and struggle to manage an inheritance he or she is unable to manage.
Unscrupulous financial or legal “advisors” could take advantage of your child.
There is a lot to consider.To ensure the safety and protection of your child, consult a lawyer familiar with the needs of disabled children and make your wishes explicit in a written will.
Guardian - An individual who has been entrusted by the law for the care of another person, for his or her estate (finances), or for both
A wellwritten will can guarantee that your instructions will be known and followed after your death.
What is a will?
A will is a written legal document that provides instructions for the disposition of your property (also called your assets or your estate) after you have died.
The term “last will and testament” is simply a more complicated name for a will. A will is generally prepared with the help of an attorney.
A will is necessary for anyone who cares how their property is distributed upon their death, who would handle matters for those left behind, or who would serve as guardian for their minor children. The parents of an autistic child need to keep in mind that bequests made in a will can have an effect on their child’s eligibility for federal benefits. If the disabled child is a direct beneficiary of money or other valuable assets with a value of greater than $2,000, this may disqualify the child from state and federal benefits.
When preparing a will, three people need to be identified within your will to make sure your wishes are carried out. These are the guardian, the trustee, and the executor.
The guardian is a responsible adult whom you put in charge of caring for and raising your children who are less than 18 years old or any disabled adult child.
The trustee is the person who will manage any property you wish to be held in a trust vehicle, usually What is a special needs trust? A special needs trust (also called a supplemental needs trust) is a legal vehicle that harbors assets for a disabled child or adult such that the resources are not considered in determining eligibility for government benefits. Afor future use by beneficiaries.
The executor for your estate is one who will be responsible for ensuring that all of your wishes as articulated in the will are carried out.A special needs trust can be relatively inexpensive to establish and very often is a one-time investment.
Special needs trusts have become the planning tool of choice for many families of dependents with special needs. They can accomplish several goals that include:
- Providing funds for the care of the individual with special needs without disqualifying him or her for government benefits
- Keeping assets out of the child’s name and control
- Providing for the professional management of assets
A special needs trust is not like a regular trust fund. Mistakes made now in setting up the trust can be costly later.
Therefore, although any attorney can set up a special needs trust; families should contact an attorney with experience in estate planning for those with developmental disabilities to set up such a trust for their child. A special needs trust serves no purpose if there is not enough money in it to help your child when you’re gone. Once the trust is established, parents, friends, and other family members can contribute to the trust.
However, once the money is placed in the trust, it cannot be removed by the guardian or trustee, except for the specific benefit of the beneficiary. This limitation makes it common practice for parents and others to contribute little in the trust fund during their lifetime, since they may have unexpected needs for the money. Making the child’s trust fund the beneficiary of bequests in the will or the beneficiary of a parent’s life insurance policies, annuities, and qualified plans is now common. Finally, other family members and friends who want to help can put money into the trust.
Special needs - The unique, out-ofthe-ordinary concerns created by a person’s medical, physical, mental, or developmental condition or disability. Additional services are usually needed to help a person in one or more of the following areas: thinking, communication, movement, getting along with others, and taking care of self.
Now that I have a trust, who should I choose to be trustee?
The trustee controls the assets placed in trust for the benefit of the special needs child. He or she responsible for distribution to the beneficiaries or for continued management of the assets. A trustee’s duties continue for the lifetime of the child. A trust is a binding legal contract, so the trustee-whether a bank or a relative-has a legal obligation to follow your instructions and to manage the trust funds in a reasonable and prudent manner. Failure to do so can result in lawsuits by the child’s guardian. The skills and financial acumen needed by the trustee depend on the size and type of assets in the trust. For larger trusts, the trustee may require expertise in collecting estate assets, investing money, paying bills, filing accountings (quarterly or annual), and managing money for beneficiaries. For more modest trusts, the trustee may only need to know what the needs of the child are and how to write a check.
The parents generally serve as trustee as long as they are alive. When they die, a successor trustee has to be ready to take over. The successor trustee, such as a family member or friend, can be named in the parent’s or guardian’s will. Because no individual lives forever, a bank or trust company should ultimately be designated as successor trustee.
The trustee should be selected for a number of qualities: financial discretion, knowledge of your loved one’s special needs and likes and dislikes, as well as a genuine interest in the child’s future. The biggest decision to make in designating a trustee is whether to use a family member or a professional. Although a lawyer or a banker can serve as trustee and may be skilled in financial matters, lawyers and banks are expensive and do not necessarily keep track of the disabled person’s individual needs. If available, a responsible family member is usually a good choice.
What is a “letter of intent” and why is it necessary when creating a special needs trust?
A letter of intent is a written document that, although not legally binding, provides direction for the person or persons who will care for the child with special needs (the guardian) after the parents die or are no longer capable of caring for their child. Because it is not a legal document, it is a good idea for you to have it witnessed and notarized. If the child has cognitive ability, he should be involved in drafting the letter. The letter of intent helps the guardian or trustee to care for your child as you would. It should contain the parents’ specific wishes and expectations, as they relate to the future of their disabled child. It is a working document for the future caregiver to follow. There is no regular format for a letter of intent, but it should be detailed and specific. The letter of intent should contain at least the following information about your child: Medical history: The letter of intent should report any existing medical problems, any medications taken regularly, and any allergies to foods or medicines. All prior dental, surgical, or medical procedures should also be included. If you’ve had good experience with doctors or hospitals, put their names and contact information in this letter. Conversely, if you’d like to avoid certain physicians, therapists, clinics, or hospitals, state those wishes and the names of these providers in your letter of intent. Your child’s physician should be able to help you with this.
Housing arrangements: Where should the child live?
How long should they live there? Who should live with the child? Relatives? Friends? Do they need to live in a private or state institution or a particular adult home? Are there people you would not want your child to live with? Are there places or institutions you’d prefer your child to stay out of? How are the living arrangements to be paid for? The letter of intent is the place to write this information.
Education:What type of education would you like your child to get? What school should they attend? Should the child get vocational training? Religious instruction? How should the schooling be paid for?
Recreation and leisure activities: If your child loves to draw and paint and you want him or her to be able to continue to have art supplies and visit museums, this is the place to discuss that.
Legal papers: A description of the type and specific location of all legal papers that affect the child should be clearly recorded in this document. If the parents have a regular attorney, their name, address, and phone numbers should also be listed in this document. The names of your child’s trustees, coguardians, or successor guardians also should be listed.
Child’s personal preferences: Parents may be the only people who are familiar with the day-to-day things that make their child happy and comfortable. Therefore, the letter of intent should include general information and background about your child; such as their likes and dislikes regarding foods, favorite leisure activities, favorite toys,TV shows, sports, or video games. It should state the rights and values you want to preserve. Record
the names of their circle of friends as well as professionals they are familiar with, including the dentist, barber, coach, music teacher, and so forth. If your daughter enjoys getting her hair styled or nails painted once a month, mention it here.
Religious preferences: The parents should be specific about what religion and religious services the child should participate in. How much religious instruction do you want your child to receive? Whom do you want to provide the instruction? Do you wish that they would attend religious services regularly? How often should it be: weekly, monthly, or yearly? Who should be responsible for transporting your child to services?
Final arrangements: In your letter of intent, describe any specific burial arrangements or religious services you’d like for your child.
What can a special needs trust pay for?
Federal benefit programs are designed to pay for the basic needs of their beneficiaries. Under SSI or Medicaid laws, basic needs means housing, food, and clothing. If the disabled person is receiving free housing, food, or clothing from someone else, including a family member or a trust, then the government benefits will be reduced or eliminated. Therefore, the money in a special needs trust cannot be used to pay for housing, food, or clothing.
Despite this, the trust can pay for many things that will make your child’s life more comfortable. Some things that the special needs trust can pay for are:
Home expenses: The trust can be used to purchase a home and perhaps rent it to the disabled person. The trust can pay for repairs, utilities, and taxes for a home; it can purchase furnishings for the home.
Recreation: The money that goes into these trusts can be used to enhance the life of your child over and above their medical care. It can pay for vacations, summer camp, or trips. It can buy recreational or sporting equipment for the child.
Other medical costs: Money in trust can be used to supplement or augment services that Medicaid does not cover, such as certain types of dental care, upgraded medical devices, extra or more intensive therapies, and vitamins.
End-of-life costs: It can pay for funeral and burial costs.
Legal costs: There are legal emergencies that a trust can pay for. If the person is not receiving the services needed from Social Security, Medicaid, or other government agencies, the trust can pay for an attorney or other advocate to fight for the individual. Without this type of help, the person might actually become homeless. If the disabled person is involved in an accident or is accused of a crime, the trust can pay for an attorney to defend them or look after their rights in a lawsuit.
Why do I need to establish guardianship for my adult child? Am I not his guardian already?
The subject of guardianship for a disabled child who is now an adult is of concern to most parents. Parents who have a child with a disability often assume that they can continue to be the legal guardian during the child’s entire life. Although it may be obvious to a parent that their child does not have the capacity to make informed decisions, legally an adult is presumed competent unless otherwise deemed incompetent after a competency proceeding. In other words, while your son or daughter will always be your child, the courts will consider them an adult when reaching the age of 18. As an adult, your son or daughter may legally sign contracts, get credit cards, and borrow money. They can choose where to live, what doctors to see, and what surgery to undergo. Your adult child may dispose of their income and any savings that you have put in their name in any manner they choose or in any way that someone else convinces them. Most alarmingly, they may live with whomever they choose or marry without your consent or approval. The potential for acts of juvenile impulsiveness or for others to take advantage of your child is obvious.
A trustee’s duties continue for the lifetime of the child.
The trust can pay for many things that will make your child’s life more comfortable.
What is guardianship?
Guardianship is a legal means of protecting children and adults who cannot take care of themselves, make decisions that are in their own best interest, or handle their assets. When the court determines that a person is incapable of handling either their personal and/or financial affairs and appoints a guardian, the person who is disabled is referred to as the guardian’s ward. A guardian is responsible for monitoring the care of the ward. The guardian need not use their own money for the ward’s expenses, provide daily supervision of the ward, or even live with the ward. However, the guardian must attempt to ensure that the ward is receiving proper care and supervision, and the guardian is responsible for decisions regarding most medical care, education, and vocational issues. For highly unusual decisions that were not anticipated at the time of the original guardianship hearing, the guardian should ask the court for instructions. The court must make decisions involving intrusive forms of treatment, such as administration of antipsychotic medication, sterilization, and the withdrawal of life-prolonging treatments.
These unusual issues may be decided by parents and memorialized in their letter of intent for the care of their child. The court supervises guardianships; therefore, the guardian is required to report to the court annually on the status of the ward.
How do I obtain guardianship for my adult child?
If your child is not capable of caring for themselves or managing their finances, then you can seek a guardianship. However, just because you are the parent doesn’t mean you are automatically named as guardian. You, like anyone else, must go through the legal system. When establishing that your child is legally incompetent to care for themselves or manage their finances, your statement of their disabilities alone is not legally adequate. You will need to produce documentation of their diagnosis and associated disabilities. You may even need to pay to have their doctor testify in court or write affidavits concerning your child’s medical condition and their capabilities.
Although obtaining guardianship is usually not a contentious issue, it can be time consuming and will cost money. To obtain guardianship, you need to hire an attorney and go to court. Be prepared for a complicated legal proceeding designed to protect your child’s right to due process under the law. As with all guardianships, an attorney will be appointed to represent the rights of your child (the ward). A formal hearing will be held before a county judge to hear evidence whether your child is substantially unable to provide food, clothing, or shelter for themselves; to care for their physical health; or to manage their financial affairs. If so, the judge will appoint a guardian.
Because you are the one who is asking to be guardian, the court will appoint you (unless you are for some reason legally disqualified). At that point, you will have legal authority to make both monetary and medical decisions for your child. Equally important, your child’s legal authority to manage funds will be terminated so that they cannot put the funds at risk. It often makes sense to name coguardians (for example, you and your spouse or you and another child) so if one dies or cannot continue for any reason, you have a backup without going through the court process all over again.
Many states allow the legal guardian to name a successor guardian. This is an important issue that should be discussed fully with both the successor guardian and your attorney. This declaration of guardianship can be contained in your will or in a separate legal document. When you die, the person named as the replacement guardian goes to court so the judge can appoint them as guardian (unless for some reason they are legally disqualified).
Many states allow the legal guardian to name a successor guardian.
What does the Rehabilitation Act of 1973 have to do with the education of my child?
As it turns out, this act has a lot to do with making accommodations for disabled children in schools. This act, specifically Section 504 of the act, is an important federal law for people with disabilities. Section 504 is a civil rights law. Its broad purpose is to protect disabled individuals from discrimination due to their disabilities. To be eligible for protection under section 504, a child must have a physical or mental impairment that substantially limits at least one major life activity. The Americans with Disabilities Act (ADA) is a similar document. It follows the format of section 504 but broadens the agencies that must comply with the rights and procedures outlined in section 504.
It is important to realize that section 504 and ADA do not guarantee direct special education services like those provided by the IDEA. The law states that reasonable arrangements must be made for disabled students, but what are reasonable arrangements? Common accommodations made under section 504 or ADA include using assistive technology, removing obstacles to effective communications, and altering rules and policies. These accommodations may include granting children additional time for testing or allowing them to use other testing methods. Additionally, school personnel may change curriculum, materials, or architecture to meet the needs of a disabled student. Under section 504, if parents believe that their child has a disability, whether from autism or any other limitation, and the school system has reason to believe that the child needs special education or related services, the school is legally bound to evaluate the child to determine whether they are disabled as defined by section 504.
Accommodations - Changes in curriculum or instruction that do not substantially modify the requirements of the class or alter the content standards or benchmarks.Accommodations are determined by the individual education plan (IEP) team and are documented in the student IEP.
Americans with Disabilities Act (ADA) - A federal civil rights law passed in 1990. It prohibits discrimination on the basis of disability in (1) employment; (2) programs, services, and activities of state and local government agencies; and (3) goods, services, facilities, advantages, privileges, and accommodation of places of public accommodation.
School - personnel may change curriculum, materials, or architecture to meet the needs of a disabled student.
Are medications useful in treating the behavioral problems of autistic children?
No medication can cure autism. Some autistic children may require medication for a short time and others require life-long treatment to help with their behavior or other symptoms. Most autistic children require no medication at all. Many distressing symptoms and unusual behaviors can be improved without the medication. Reducing these distressing symptoms enhances the individual’s ability to participate in educational and community programs, as well as reducing the stress experienced by the parents or caregivers.
Behavioral problems in autistic children can range from hyperactivity, motor and vocal tics, difficulty with transitioning from task to task, uncooperativeness, or defiance to aggression, uncontrollable tantrums, and self-abusive behavior, such as biting of the hands and arms. Although most behavioral problems are amenable to behavior modification techniques such as ABA, refractory, severe, or dangerous behaviors may require medication to treat them effectively.
When a child develops new behaviors-especially when the onset is abrupt or the behavior is violent, parents and caregivers should be vigilant for identifiable causes of the behavior, such as conflicts at school with teachers, therapists, or classmates; allergies; physical ailments or injuries; or more serious illnesses. Even behavioral changes that occur slowly, that are sometimes dismissed as “typical autistic behavior,” can be caused by a reparable problem in the environment. Because communication is a problem with autistic children and adults, they may find it difficult to tell their caregivers that they are feeling sick or are in pain. This frustration may manifest itself as aggression or self-injury, especially if the person is pressured to continue with daily routine or work activities.
When a child exhibits a deterioration of behavior, although it may eventually be attributed to their underlying autism, parents should consider the following causes first:
Social conflict: Consult with teachers and therapists to see if there have been issues in your child’s school environment.
Infections: Physical ailments such as earaches, tooth abscesses, and influenza may be causing problems.
Unrecognized injury: Hyperactive children are prone to minor injuries and sometimes more serious injuries. An inability to communicate or explain the injury can result in unrecognized injuries going unnoticed by parents.
Dr. Quinn’s comment: Our child suffered a serious fracture of his upper arm that went unrecognized for 2 days, and whose only symptom was emotional withdrawal and decreased interest in his favorite meals.
Medication side effects: Many common medications, such as cold or allergy medication, can cause behavioral changes in autistic children. Paradoxically, medications used to improve behavior can sometimes worsen it.
Worsening of a chronic medical condition: Behavior changes may indicate a worsening of a chronic medical condition such migraine headache, stomach ulcers, hemorrhoids, rheumatoid arthritis, or Crohn’s disease.
Discussing new behaviors, as well as any other symptoms (such as fever, diarrhea, lethargy, or change in gait), with the child’s pediatrician is important. Every effort must be made in these cases to treat the underlying condition medically before treating the behaviors unnecessarily with sedatives, antidepressants, or tranquilizers.
What types of medications are used to treat autistic children?
The types of medications used to treat an autistic child depend on the symptoms as well as any other condition that may contribute to unacceptable behavior. Medications commonly prescribed to treat the behaviors of autistic children include antidepressants, anticonvulsants, neuroleptic medications (also known as antipsychotic medications), sedatives, and stimulants.
These medications all can have serious side effects and are not prescribed lightly by concerned physicians. Although most medications can be used safely for long periods of time without harm, the use of any medication is associated with health risks. Parents should be aware of the risks to the child as well as the likely benefit to the child. Treating a child with medication should only be undertaken after the parents (and the child, when appropriate) have balanced the risks and benefits of the medication. Parents need to be made aware of all the possible side effects of any new medication as they will be observing the child most closely and can aid the treating physician in decisions about adjusting the dose of medication or eliminating it.
Is there anything I should do before giving my child a medication?
Behavioral problems, such as aggression, self-injurious behavior, and severe tantrums, can keep the person with autism from functioning effectively at home or in school. Physicians can use medications to treat these behavioral problems. When your child is treated with medication, you should observe the following rules:
1. Consult experienced physicians. A child with autism may not respond in the same way to medications as typically developing children. Given the complexity of medications, drug interactions, and the unpredictability of how each patient may react to a particular drug, parents should seek out and work with a physician who has experience in treating autistic children with these medications. This physician should be able to tell the parents what the appropriate dosage for their child is and how it should be administered (e.g., pills, liquid, or injection).
2. Observe closely. Like any person taking a new medication, an autistic child should be monitored closely by the parents and medical professionals. You should ask the physician how your child will be monitored and by whom. Ask your physician about what signs or symptoms you should look for that may signal a problem or what laboratory tests are required before starting the drug and during treatment.
3. Begin with low doses. Because the amount and severity of medication side effects tend to heighten with an increase in the dose of the medication, doctors should prescribe the lowest dose possible that is effective. The doctor may begin with a low dose and then observe its effects on your child’s behavior for weeks or months. The doctor may have to make several adjustments to get the right dose that optimizes behavior and minimizes side effects.
4. Be aware of the side effects of the medications prescribed. When medication is being discussed or prescribed, ask about the safety of its use in children with autism. Ask the doctor about any side effects the medication may have and if there are any long-term consequences to the use of the medication. It is helpful to keep a record of how your child responds to the medication at what dose. The product insert that comes with your child’s medication lists the drug’s indications, side effects, and monitoring requirements; parents should read this and discuss any concerns they have with the doctor. Some people keep the product inserts in a small notebook to be used as a reference. This is especially useful when your child is prescribed several medications.
5. Be aware of drug or food interactions. The physician should be made aware of any other medications your child is taking, including over-the-counter cold medications, home remedies, or nutritional supplements. Ask the physician if there are there possible interactions with other drugs, vitamins, or foods.
Neuroleptic - A class of drug that includes Haldol and Risperdal. Also called antipsychotic medication.
No medication can cure autism.