Having a sibling can be complicated; they can be your best friend or your arch nemesis, or a combination of both. Having a sibling with autism can be doubly complicated - suddenly there are new challenges to navigate and questions to answer.
As a parent, it's important to remember that the neurotypical child should never feel responsible for the treatment, intervention, or care of a sibling with autism. They should also feel like their day, plans, and events are just as important. Time with each child, neurotypical or not, should be priority - this can feel chaotic, and at times impossible, but it will help the relationships of everyone in the family. It's also important to try to schedule time for everyone together - while a neurotypical child might not have anything in common with his brother or sister with autism, they should still spend time with their whole family as a group, so that all siblings are reminded that, autism or not, their relationship as siblings doesn't change.
Developmental-behavioral pediatricians evaluate, counsel, and
provide treatment for children, adolescents, and their families with a
wide range of developmental and behavioral diffi culties, including
• Learning disorders including dyslexia, writing diffi culties, math disorders,
and other school-related learning problems
• Attention and behavioral disorders including attention-defi cit/hyperactivity
disorder and associated conditions including oppositional-defi ant behavior,
conduct problems, depression, and anxiety disorders
• Tics, Tourette syndrome, and other habit disorders
• Regulatory disorders including sleep disorders, feeding problems,
discipline diffi culties, complicated toilet-training issues, enuresis
(bedwetting), and encopresis (soiling)
• Developmental disabilities including cerebral palsy, spina bifi da,
mental retardation, autism spectrum disorders, and visual and
• Delayed development in speech, language, motor skills, and
• Behavioral and developmental problems complicating the full range
of pediatric chronic illnesses and disabling conditions (for example,
genetic disorders, epilepsy, prematurity, diabetes, asthma, cancer)
The following medical professionals may be qualified to assess a child suspected of having autism:
Not all medical professionals are alike. Some may be more experienced in assessing and treating autism. Your child's pediatrician may be able to refer you to someone who can help. In addition, some local organizations which are dedicated to helping individuals with disabilities may also be able to point you in the right direction.However, often the most successful way to determine the right person for the job, is to ask other parents who are already raising children with autism.
The Arc is a national community-based organization which provides services and support for families of and individuals with intellectual and developmental disabilities, including those dealing with autism spectrum disorders. There are local chapters which range in size from small, volunteer supported groups to large multi-million dollar organizations. The web address is www.thearc.org. There, you can locate your local Arc chapter. In many chapters, there are advocates can walk you through the process of placing your child on appropriate waiting lists to receive funding for services such as respite care and therapies. Chapters in larger cities will be able to provide more services including daycare for adults with special needs and after-school and summer programs for children and youth.
Let's face it, no matter which course of treatment you choose to take for helping your loved one with autism, it's going to cost you. While health insurance may cover services such as occupational and speech therapy, other expenses such as ABA, respite care, and other expenses incurred are expensive. One means of finding extra funding is the the Home and Community-Based Services Waivers (HCBS Waivers Section 1915 (c)).
With medicaid waivers, an individual is allowed more diverse services and supports by "waiving" the need toget those same services in an institution. Medicaid is waived for provisions in order to allow long-term care services to be delivered in community settings. This program is the Medicaid alternative to providing comprehensive long-term services in institutional settings. Individuals who have been diagnosed with an autism spectrum disorder qualify for this program.
This program is controlled at the state level. The waiting lists tend to be several years long, so it is best to place your child on this list as soon as you have a diagnosis. To learn more, check out the website for the Centers for Medicare & Medicaid Services (part of the Department of Health and Human Services). The web address is http://www.cms.hhs.gov/MedicaidStWaivProgDemoPGI/05_HCBSWaivers-Section1915(c).asp .
States may offer a variety of services to consumers under an HCBS waiver program. These programs may provide a combination of both medical services (i.e. dental services, skilled nursing services) as well as non-medical services (i.e.respite care, case management, environmental modifications). Family members and friends may be providers of waiver services if they meet the specified provider alifications. Check out the state medicaid agency list at http://184.108.40.206/medicaid/states.html to find contact information for the waiver programs available in your state. Persons with an autism spectrum disorder are typically placed on similar waiver program waiting lists as individuals with mental retardation or developmental delays.
Most neurotypical children look forward to summertime. It's a break from the monotonous routines and rigid schedules of school. Alas, it is these very aspects which can sometimes make summer vacation long and unpleasant for families with children on the autism spectrum. Children with autism thrive on routine and structure. Changes in schedules, even a surpise, fun activity, can bring undue stress, often resulting in meltdowns. The most obvious and effective solution is to provide them with a daily schedule. Depending on your child's level of functionality, choose pictures or words to describe each activity and when they will occur. You know your child best, so adjust the schedule according to their personality. Some may need even the most basic daily routines included, such as when to get dressed or exact meal times. Other children may just need to know any activities which may be different, such as the day they have occupational therapy or swim lessons. One of the keys to a stress-free summer is consistency. Utilizing and adhering to a schedule will help to alleviate anxiety your child may have over the unexpected. Even scheduling fun activities such as a trip to their favorite fast food restaurant has its benefits. Once a child with autism has decided they want lunch at McDonald's, they may fixate on it until it actually happens. When it is on a schedule, this can lessen some of their anxiety and resulting perseveration, as they can see exactly when this event will occur. While it may seem daunting to have to "spell everything out" for your child, over time it will become second nature for both of you.