Raising a child with autism and epilepsy can be challenging; here are 10 tips that can effectively help you, your family, and your child.
Parents often feel overwhelmed when their child is diagnosed with autism. When their child receives a further diagnosis of epilepsy, those feelings may intensify. Currently, approximately one in 26 people will develop some form of epilepsy in their lives. Studies suggest children with autism may be slightly more likely to also have epilepsy.
Here are 10 simple tips for helping your child with autism and epilepsy
1. Do your homework
Prioritize obtaining a proper diagnosis from your pediatrician or pediatric neurologist. Not every child who has a seizure has epilepsy. There can be other reasons for a seizure such as sudden fever or extremely low blood sugar. A diagnosis should be made by a medical professional, who will take all facts and the child’s background into consideration.
Many of us grew up hearing terms like grand mal, petit mal, and absence seizures. However, in 2017, the International League Against Epilepsy (ILAE) developed a new way to organize and describe seizures and epilepsy. New terms include:
- Generalized Epilepsy: These used to be referred to as “Grand Mal” seizure and typically involve loss of consciousness. Generalized Non-Motor Epilepsy used to be referred to as “Petit-Mal” seizures or “Absence” seizures
- Focal Epilepsy: This used to be referred to as “Partial” seizures
- Generalized and Focal Epilepsy: Doctors may refer to your child as having this type of epilepsy if they have both Generalized and Focal Epilepsy
- Unknown: Doctors may utilize this term if they can’t determine if your child’s epilepsy is either Generalized or Focal Epilepsy
Knowing these new terms and what they mean will assist parents when explaining their child`s type of epilepsy to others.
Some people in your life may not know how to react when your child with autism has a seizure; they may find it scary. Therefore, it’s extremely important for you to remain calm and model the proper approach to dealing with your child’s seizures.
If you model a calm demeanor while caring for your child, others will not be afraid to interact with him/her for fear of having to deal with a seizure.
3.Health care plan / 504 Plan
If your child’s epilepsy impacts their attendance at school or their academic ability, your child may require a health care plan or a 504 Plan. It will be important for you to work with personnel from your child’s school, especially the school nurse. You should inform and educate personnel about any medication your child may need to take at school.
4. Educating the educators
You may discover your child’s teacher has worked with students with epilepsy in the past. Like autism, epilepsy tends to present itself differently from person to person.
Your child may have very different needs compared to another student with epilepsy. You will need to educate the teacher on the specific triggers that may cause your child to have a seizure. These could include flashing lights, fevers or a sudden onset of illness, lack of sleep, stress, your child’s menstrual cycle, missing a dose of his/her medication, and any other potential triggers. Knowing these triggers will help your child’s teacher to manage your child’s epilepsy
Teachers and nurses also need to know when it is appropriate to call the emergency services. This may include situations such as: your child stops breathing, he/she gets injured during the seizure, the seizure lasts for more than five minutes, or another seizure occurs before your child regains consciousness.
Be sure to check each year that the school has your correct cell phone number in case of an emergency. Should an emergency occur, the school will be able to notify you immediately.
5. Medications and side effects
Medications for children with epilepsy are important. Monitoring your child’s use of his/her medication is equally important. Patients often feel so much better after taking epilepsy medication that they may be tempted to stop. This could be a risk for future seizures and parents should therefore help their child take medicine as prescribed.
As a parent, you need to work with your child and explain that the reason he/she feels well is because he/she is taking their medication as prescribed.
Parents also need to be educated about the possible side effects of various medications their child with autism may be taking to manage their epilepsy.
Parents should monitor their children carefully to see if there are changes in their overall appetite, sleep patterns, and weight loss or gain. Such information needs to be shared with your child’s teacher as well as your pediatrician.
6. Know the symptoms
There are many different symptoms associated with epilepsy. However, as a parent, it is important that you are aware of the symptoms that are particular to your child. Such symptoms may include:
- Loss of consciousness
- Stiffness in their arms or legs
- Fumbling of hands or feet, etc.
Your child with autism may be aware of his/her epilepsy symptoms and triggers; this awareness could help him/her reach out when he/she feels a seizure coming on. If your child on the spectrum is nonverbal, however, you may need to educate those in your life about his/her specific triggers to help keep him/her safe.
7. Dealing with myths
As a parent of a child with epilepsy, you may be surprised at how many people still believe myths about epilepsy. For example, a common myth is that placing a ruler or a wooden spoon in the mouth of someone having a seizure will keep them from biting their own tongue. You’ll need to remind people that they should never attempt to place anything in the mouth of a person experiencing a seizure.
Others may want to approach your child during a seizure and hold him/her down. You’ll need to explain that instead of this being helpful it can actually be dangerous to your child. Trying to restrict his/her movement during a seizure could contribute to him/her having a physical injury such as a broken arm or other bone.
There are some helpful things that can be done during a seizure:
- Furniture can be moved so your child doesn’t hit his/her head
- If he/she is lying on the floor, turn him/her on their side
- If possible, loosen or unbutton clothing around his/her neck
8. Clean and extra clothes
After a seizure, your child on the spectrum may experience confusion or feelings of exhaustion. He/she may also be embarrassed, especially if the seizure occurred in front of his/her peers or in a classroom. A child may soil themselves during a seizure. You can help your child by having a clean change of clothing at school. He/she can go to the nurse’s office, get cleaned up, change his/her clothing and then go back to the classroom. Most students experiencing a seizure at school want to return to a sense of “normal” as quickly as possible.
9. Timing seizures
Many people may approach you and ask how they can help while your child is experiencing a seizure. Parents will often politely dismiss such an offer. However, something a bystander can do that can be very helpful for your child is to assist you with timing the length of the seizure.
While assisting their child, parents may forget to time the seizure. Around 20 seconds may feel like 20 minutes to a parent dealing with such a crisis. Knowing the actual length of the seizure can provide valuable information to the child’s pediatrician.
10. Enjoying your child
An autistic child with epilepsy may present some unique challenges to your family. It is important for you to teach and model for your child that while “autism” does not define them, neither does their “epilepsy.”
While being knowledgeable and supportive of your autistic child and his/her epilepsy, remember to also enjoy him/her as just your child. He/she needs to learn how to love who and what they are. Your child will be better equipped to do so when he/she senses and sees your unconditional love.
This article was featured in Issue 120 – Epilepsy: High Risk for ADS Kids