What Grandparents Should Know About Medication for Autism

Because we’ve lived a lot longer, we autism grandparents usually have much more personal experience with medications than do the parents of our grandchildren. We know that medications can be extremely helpful, and we also know that almost all medicines are accompanied by one of those small-print documents that tells about all sorts of side effects and contraindications.

So even if we are not personally on the autism spectrum, we can, and should if our opinions are welcome, offer our wisdom regarding the use of medications to treat our autistic grandchildren.

Medicines have been effective with persons on the Autism spectrum in reducing self-injury, aggression, irritability, repetitive behaviors, anxiety, tantrums, depression, obsessive-compulsive behaviors, hyperactivity, withdrawal, lack of focus, panic disorders, seizures, etc.

There are ten basic things that we need to know and should share with our grandchildren’s parents if our input is welcome.

1. No medication cures autism. Even though some medications can help with problem behaviors, no medicine has yet been found effective in totally eliminating any problem behavior.
   

2. All of the few dozen medicines that are prescribed for autism behaviors come with negative side effects, some with very serious side effects.
   

3. All medicines for autism are most effective when combined with non-medicine therapies (such as ABA).
   

4. Medicines for autism are always prescribed on a trial basis. It may take weeks or even months to determine whether a specific medicine is helpful and what dosage maximizes its effectiveness.
   

5. Most of the time it is best to use only one medicine at a time.
   

6. Medicine should be tried only if non-medicine therapies have been ineffective.
   

7. Medicines for autism are expensive, so you should see if insurance pays.
   

8. There are five major reasons for using medicine if other therapies have not helped sufficiently. Aggression and/or self-injury, too much stress at home and/or elsewhere, problems at school, problems with community activities, problems that affect learning, and problems that affect sleep.
   

9. The following four things are usually not helped by medicines: following directions, slow learning, communication skills including talking, social skills.
   

10. All members of the child’s “team” should be informed about the child’s medicines: teachers, therapists, caregivers, healthcare providers, etc.

Autism Grandparents and ABA Therapy

Whether or not we autism grandparents are involved with our grandchildren, we should be knowledgeable about ABA therapy – autism’s most widely used and proven therapy. ABA therapy has the evidence-based “best practice” recommendation of the U.S. Surgeon General and the American Psychological Association. Scientific research has confirmed the effectiveness of ABA therapy.

The number of newly-introduced “miracle therapies” for autism seems to continually increase as autism becomes more prevalent. Unproven therapies usually have three calling cards. First, they make use of amazing anecdotal stories (“My child experienced a miracle cure from autism). Second, their advertising and marketing materials are heavy on fantastic claims. And third, they site zero scientific evidence. (I just now Googled a few companies that provide ABA therapy, and none uses amazing anecdotal stories or fantastic claims.)

One way to expose an ineffective autism therapy provider is to Google the therapy company’s name accompanied by the word, “controversy.” That often leads to damaging information provided by courts, claimants, and watchdog entities.

Our grandchildren’s parents need to be aware that ABA therapy is probably unique in the amount of positive scientific study and scrutiny it has received.

My first encounter with ABA therapy took place when I visited my 2-year-old granddaughter’s prospective “school” – an ABA therapy provider. They showed me a series of clipboards – one for each child – that had lots of blocks and lines and numbers and phrases and dates and times. The clipboards contained meticulous documentation of ongoing micro-strategies and results. If, for example, a micro-goal was for the child to make eye contact with the therapist when the therapist said her name, the clipboard would document every prompt and result and, if successful, the positive reinforcement. I learned that ABA therapy is one-on-one therapy that includes ongoing documentation of goals and results.

Each ABA program is customized for the specific child. ABA utilizes lots of techniques – all focused on what happens both before and after a specific behavior. A custom mixture of techniques is developed according to each child’s abilities, challenges, and personality. ABA has been proven to be helpful for language and communication, attention and focus, social skills, self-control, self-help, motivation, etc. And it can be helpful in replacing problem behaviors (tantrums, aggression, self-injury etc.) with positive behaviors.

The overall strategy of ABA therapy is to use positive reinforcement techniques in a way that can be carefully measured and documented.

ABA therapists are of course human, and some are “better” than others, so it is important to ask for references from other parents. Also, there are “trained” ABA therapists and “Certified” ABA therapists. By law, “trained” ABA therapists must be supervised by Certified ABA therapists. (ABA therapists who are not Certified should be expected to be just as effective as those who are.)

Although not required, parents and caregivers are sometimes provided with enough ABA training to do various ABA techniques at home. This often entails parents being available to receive an hour or two of instruction per week. But again, this type of parental training isn’t required, and progress can be expected without it.

The final advice of course is that with autism, each child is different. Although ABA therapy “works” on most children, there are rare cases when other types of therapies are more appropriate. Again, “rare.”

Those of us who participate as caregivers for our grandchildren can be knowledgeable about our grandchildren’s therapies and determine whether there is a way for us to participate when our grandchildren are in our care.

Autism Grandparents and IEPs

IEP stands for Individualized Education Program. Every child who is eligible for special education is required to have an IEP. The school that she attends organizes an annual meeting to determine the IEP. Grandparents are allowed to be extremely involved in the process – that is, of course, if that’s what the parents want and if the grandparents are available.

I am involved in my granddaughter’s education, and when I attended my first IEP meeting I made lots of mistakes. My biggest mistake was thinking that all I needed to do was show up and allow the IEP experts to develop an appropriate program for her.

I now have a much better handle on how to have the best involvement. The following information and suggestions cover the basics.

The U.S. government requires that every child receive “free appropriate public education . . . in the least restrictive environment.” And, thanks to a 2017 Supreme Court determination that centered on a student with autism, IEP goals for special education students must be “appropriately ambitious.” That is, schools are not allowed to aim for simply minimal progress. “Every child must have the chance to meet challenging objectives.”

Your grandchild’s school has the responsibility of determining whether he is eligible for special education and associated services. The school does this via an evaluation process – an evaluation process that is initiated by parent request. The evaluation covers a lot of ground, and if the evaluation determines that the child is not eligible for special education, the parents can request that the school district conduct an IEE (Independent Education Evaluation).

After the student is determined to be eligible for special education, the school will arrange for a meeting to determine an IEP: Individualized Education Program. The meeting attendees typically include the child’s case manager, the school’s special education teacher, a general education teacher, a school administrator, perhaps a school psychologist or social worker, and perhaps other teachers and/or therapists who know the child. Parents attend the meeting and can bring others with them who know the child: therapists, doctors, close friends, attorneys, grandparents, etc.

The parents (and grandparents if involved) can prepare for the IEP meeting by knowing (and listing) the child’s strengths and weaknesses both in and out of school, by doing research on the various types of programs and supplemental aids (e.g. speech therapy, assistive technology, special seating, etc.) that might be appropriate for the child, and listing their own goals for the child’s school year.

Parents (and grandparents) should always be aware that THEY know the child best, and should be advocates for what THEY believe are the best components for an appropriate IEP. And parents should come to the IEP meeting with a positive attitude and very high expectations.

The IEP goals should be measurable, and there should be a clear understanding of how and when progress will be measured for each goal. Goals should be measured at least quarterly. And any recommended supports and services should be clearly defined.

Beginning when children enter middle school, the IEPs should begin addressing plans for transitioning into adulthood.

I knew none of this in advance of my first IEP meeting for my granddaughter. It was simply an education meeting that her parents asked me to attend. It was both intimidating and unnerving to sit there and hear a half-dozen “experts” talk about my granddaughter’s strengths and challenges, and observing them determine a best-case education program for her. They were all nice and well-meaning, but their in-person involvement with my granddaughter had been far less than mine. And so was their knowledge of her abilities. Had I come prepared I would have been able to provide valuable input to the IEP development.

One interesting thing is that if there is not a public school that can accommodate the child’s IEP, the child can attend an appropriate private school at public expense.

How involved should parents/grandparents be in the child’s education and IEP development? VERY! And what is the best way to be very involved? Be involved in the school and have good relationships with the appropriate teachers and administrators. The best way to be involved with the school is to take part in school activities and volunteer for school events. And the best way to be involved with the teachers is to ask them, and comply with, what sort of communication (and how often) they want from you: e-mails, meetings, telephone, etc.

So if you, like me, have in-person involvement with your grandchild’s education, you can play an important role in establishing a best-case IEP with best-case results. And if you are not involved with your grandchild’s education, you may want to let your grandchild’s parents know that you’re willing to share some research and guidelines with them regarding establishing and maintaining a productive education program.

There is of course a lot of information about IEPs on the Internet. Autism Speaks’ website is a great place to start: www.autismspeaks.org.