Ask the Expert
Q: As a parent, I want to help my child to have a healthy understanding of his sexuality. What is the best way to approach the subject during early childhood and later during the teenage years?
A: Most parents are concerned about teaching sex education to their child, but find resources are lacking to help them do it. First, it is never too young to start addressing sexuality. Schools don’t start teaching sex education until 5th grade, but it is recommended to start age appropriate education earlier, especially for individuals with Autism Spectrum Disorder (ASD). First, educate your child about gender differences early on (e.g., toddler and school age) through use of pictures, Social Stories™ and game playing. Remember to use different types of body sizes, hair style and clothing for both males and females. Use life-size posters, anatomically correct dolls and other hands-on visuals while teaching. Teach the similarities and differences between genders, while still encouraging non-gender stereotyped play and activities.
Next, teach about body parts using anatomically correct words such as penis, vagina, breasts, pubic hair and so forth as it is developmentally appropriate. They also need education on body fluids such as tears, mucus, saliva, sweat, blood, urine, semen and menstrual blood – explaining what body parts excrete what fluids. Again, use of pictures, Social Stories™ and other hands-on learning tools that are age appropriate will be the most helpful.
When teaching about puberty, it is extremely important to use pictures of males and females that represent body change and growth (e.g., muscle, hair, vagina, penis, etc.) throughout the lifespan (e.g., at ages 8, 12, 15 and 18). Have the child recognize what age they are in the pictures during those discussions. Many individuals report still feeling socially like an eight-year-old, even though they are in the body of a 12 or 15-year-old. Recognize that those feelings are normal for individuals with ASD.
Once the basics are taught, then you can start to teach about sexual intimacy. Sexual intimacy is very different for an individual with ASD as they typically experience a gap between “knowledge” and “experience” given their difficulties with social interactions. As they continue to grow, I’d recommend using sex education and sexual intimacy books to help with your discussions. One of my favorite resources is Davida Hartman’s book, Sexuality and Relationship Education for Children and Adolescents with Autism Spectrum Disorders which was created for professionals but can be extremely useful to parents who are proactive in teaching.
It is also important to address challenging topics (e.g., masturbation, stalking behaviors, sexting, child pornography, indecent exposure, etc.) throughout their preteen and teenage years. Many times, these topics are being addressed after the problem has already occurred, which is why we are seeing an increase in inappropriate sexual behaviors in our schools and in the juvenile detention centers. Many of these problems can be prevented by teaching your preteen or teenager about these topics with pictures, Social Stories™ and books before the behavior occurs.
-Cara Daily, PhD, BCBA
Dr. Cara Marker Daily is a licensed pediatric psychologist and board certified behavior analyst with over 20 years of clinical, research and teaching experience with autism in the home, school, hospital and community settings. Dr. Daily is the President and Training Director of Daily Behavioral Health and the Founder and Executive Director of the Building Behaviors Autism Center.
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Q: What is a STABLE Account and how do I know if I’m eligible? How can I use the money in my STABLE Account?
A: STABLE stands for State Treasury ABLE. It is an account for individuals with disabilities that is generally not counted as a resource when determining Medicaid or Supplemental Security Income (SSI) eligibility. Although STABLE is the name for the Ohio program established after the federal Achieving a Better Life Experience (ABLE) Act was passed, it is not limited to Ohio residents. A STABLE Account is not a trust. To open a STABLE Account, a person must qualify as an “eligible individual,” which means that the person developed his or her disability prior to the age of 26. Additionally, an eligible individual must be entitled to SSI or Social Security Disability Insurance (SSDI), have a condition listed on the Social Security Administration’s List of Compassionate Allowances, or be able to “self-certify” the disability and diagnosis. STABLE’s enrollment is only available online and offers an eligibility quiz to help individuals identify if he or she is eligible to enroll.
A STABLE Account can receive combined deposits of up to $14,000 per year from any source, including the eligible individual. The maximum amount that can be contributed over the eligible individual’s lifetime is equal to the sponsoring state’s 529 plan, which in Ohio is $426,000; however, the Account balance over $100,000 will be considered a resource if the eligible individual is also an SSI recipient.
The eligible individual has direct access to the funds in the STABLE Account and can even request a reloadable prepaid debit card. It is the responsibility of the eligible individual to use the funds correctly. STABLE Accounts should only be used for qualified disability expenses, which are expenses incurred when the person was an eligible individual, the expense relates to the disability, and the expense helps the eligible individual maintain or improve his or her health, independence, or quality of life. Examples include housing, transportation, education, assistive technology, employment training, legal fees, personal support services, health and wellness, and financial management. If an eligible individual expends funds from the STABLE Account for non-qualified disability expenses, the eligible individual will pay income tax, plus a 10% penalty, on the earnings of the non-qualified distribution. An improper distribution from a STABLE Account could also be counted as income when determining the individual’s eligibility for means-tested government benefits, like Medicaid or SSI, so understanding the rules and keeping accurate records is important.
For more information or to establish a STABLE Account, visit www.stableaccount.com or call 800-439-1653.
-Amanda M. Buzo, Esq.
Amanda M. Buzo, Esq., is the Executive Director of Community Fund Management Foundation, a non-profit special needs trust advisor. Prior to joining CFMF, Amanda was a special needs and estate planning attorney.
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Q: What are the most common types of medications used to treat autism? How do I know which one is the right fit for my child?
A: Currently, there are no medications which treat underlying causes of autism. Rather, medications are used to target symptoms commonly occurring in autistic individuals such as irritability, aggression, distractibility, hyperactivity, impulsivity, anxiety, mood fluctuations, depression or sleep problems.
Dopaminergic antagonists, risperidone (Risperdal) and aripiprazole (Abilify) are used to treat aggression and irritability. ADHD symptoms (distractibility, hyperactivity and impulsivity) are treated with stimulants methylphenidates (Concerta, Focalin, Metadate, Ritalin, Quillivant and others) or amphetamines (Adderall, Vyvanse and others), atomoxetine (Strattera) or alpha-agonists (guanfacine and clonidine). Anxiety may be treated by SSRI’s such as fluoxetine (Prozac), sertraline (Zoloft) or the non-benzodiazepine anxiolytic, buspirone. Depression, mood irritability or OCD may be benefited by SSRI’s, sleep problems by melatonin, diphenhydramine (Benadryl) or clonidine; and, tics by guanfacine, clonidine or dopaminergic blockers. No medications have been shown to treat stimming or repetitive autistic behaviors (as opposed to repetitive behaviors driven by OCD which may respond to treatment with an SSRI).
Typically, one identifies symptoms which may benefit from medication, prioritizes them and selects a medication to target that symptom. The prescriber takes into account a variety of factors including secondary symptoms, behaviors, other individual characteristics and responses to prior medications. For example, it may be acceptable for an obese child to have the side effect of decreased appetite while this may not be acceptable for an individual who is already having difficulty gaining adequate weight. An individual with ADHD and anxiety tendencies may have exacerbation of anxiety from stimulant medication and lessening of anxiety when his ADHD is treated with atomoxetine. One also considers practical issues such as cost and whether the child will more readily tolerate a pill which must be swallowed whole, a chewable or liquid medication?
Which medication is right for your child is determined by a process of educated trial and observation since any individual’s therapeutic response and acceptable side effect profile may be unique. All medications may have adverse effects though, happily, the overwhelming majority of side effects are not dangerous or irreversible if prescribed and monitored appropriately. Unfortunately, people on the autism spectrum are frequently more prone to side effects. A cardinal rule in dosing medications for people with autism is, “start low and go slow.” Regular communication between the parents, teachers and prescribing physician or nurse is key to finding a medication and dose which works for your child.
It is important to remember that optimal interventions for individuals with autism are multi-modal. That is, a combination of behavioral, educational, recreational, social, language, medical and others. When medication is warranted, parents and practitioner need to remember it is highly unlikely that finding the “perfect dose” of “just the right medicine” will be the entire solution they are looking for. If the parent’s and/or doctor’s perspective is so narrow that the only questions being considered are, “Is this the right medicine?” “Is this the right dose?” “This medication has helped his attention. Now, which medicine do we need to help his anxiety?” the child will not make the gains one would hope for.
For a good resource on autism and medication, refer to the recently-released Autism Spectrum Disorder: Parents’ Medication Guide published by the American Academy of Child & Pediatric Psychiatry. Click here to read the full document.
— Dr. Steven Wexberg
Dr. Steven Wexberg is a board certified pediatrician who is on staff at the Cleveland Clinic Pediatric Institute. He received his medical degree from Case Western Reserve University School of Medicine and has been in practice for more than 30 years.
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