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It doesn’t hurt for us autism grandparents to be knowledgeable about autism sleep disorders – whether or not our grandchildren ever sleep with us. If they do have overnighters with us, we can put our knowledge into action, and if they never do, we can let their parents know that we’ve done some sleep research that may be helpful.


It’s common for persons on the autism spectrum – children and adults – to have chronic sleep disorders: difficulty falling asleep and difficulty staying asleep. A 2019 research study found that 80% of pre-schoolers experience abnormally disruptive sleep. Another study showed that children with autism spend 15% of their sleep time in the REM (rapid eye movement) stage, while neurotypical children average 23%. REM sleep is critical for learning. And too little sleep exacerbates autism challenges such as stimming and social behaviors.



But there are some things that can be helpful. The first thing to do is to get a medical analysis. For example, is your grandchild taking a medication (such as for ADHD) that contributes to sleep problems? Are there gastro-intestinal problems (common with autism)? You can even get a professional sleep assessment, but it takes place in a laboratory and includes a variety of wires and sensors – an environment that doesn’t appear to be sleep-friendly and thus may not be appropriate for many persons.


Once a medical analysis has been completed, the next thing to consider is the sleeping environment. Is the lighting too dark or too light? Some children with autism respond well to wearing a sleep mask. What about sound? Some persons sleep better with zero sound, others with a soft “white” noise such the sound of a gentle rain. Headphones or earplugs can be tried. What about the temperature in the room? For most persons colder is better than warmer. What about dolls or stuffed animals? Many children sleep better when holding a favorite “friend.” Constant experimentation with the sleeping environment can eventually result in a condition that greatly approves sleep.


Most professionals recommend that an established bedtime “routine” is helpful for sleep – a routine that begins from 15 to 30 prior to sleep time. They also recommend that the routine be written, or demonstrated by pictures or objects – in a way that the child can comprehend. The pre-sleep routine should not include television or any sort of tablet or computer screen. It should include normal pre-bedtime things such as brushing teeth, putting on pajamas, going to the bathroom, etc., but should also include calming things such as reading or listening to music. And once a routine is established, the recommendation is to stick to it until it becomes ingrained.


Regarding food, it is almost unanimously recommended that there be no meals within at least a couple of hours prior to bedtime.


There are other unanimous recommendations that may seem obvious: don’t allow late afternoon naps; get lots of physical exercise during the day; and no caffeine (including that found in chocolate and some sodas) within 5 hours of bedtime.


Adults with autism may be able to take Ambien for improved sleep, but children shouldn’t take it. Melatonin supplements may be helpful for children.


If your child has developed a need for a parent to sleep in the bed with him, it is beneficial to wean him of this need. This can be done very gradually. Begin by telling him that you will sleep with him for most of the night, but not all of it – and that he’ll be fine by himself after you leave. You may want this initial stage of weaning to include only a 10% reduction in the time you stay in the bed. Then gradually increase the amount – with appropriate praise each morning – until you stay in the bed only until he falls asleep.


The next stage is to begin bedtime with you sitting on the bed, perhaps with your arm around the child. Then after a few nights of lessening this, begin bedtime with you sitting in a chair next to the bed. Then over the coming days move the chair farther and farther away while giving the child less and less attention. You get the idea. The duration of this weaning process varies from child to child – sometimes taking as long as several months. But successful weaning will have long-term benefits.


Autism Speaks (www.autismspeaks.org) has website information on sleep problems, and one gimmick that is suggested is a “Bedtime Pass” – a coupon that the child can use just one time during the night in exchange for a kiss or hug or drink or water or whatever. And if the child goes the entire night without using the Bedtime Pass, he might be rewarded with a sticker in the morning. And then a certain number of stickers might result in a store-bought prize.


Sleep patterns usually change with adolescence – the biggest difference being the need for a later bedtime, usually an hour or so.


One of the best ways we autism grandparents can be helpful, even if we live a thousand miles away, is to be knowledgeable. Our grandchildren’s parents are usually so busy with day-to-day responsibilities that they simply don’t have as much time as we do to search the Internet or read books to find possible solutions for their children’s challenges. When our children lament to us that our grandchildren are experiencing difficulties, we can volunteer, “Would you like for me to do some research on that and let you know what I find?” Sometimes this type of third-person advice is even better received than us saying, “Well, if he were my child, I would . . .”

Autism Speaks has prepared a document, available free on their website (www.autismspeaks.org), entitled, “100 Day Kit for Families of Young Children Newly Diagnosed with Autism.” It’s a 21-page document for guidance immediately after diagnosis, “to help you make the best possible use of the next 100 days in the life of your child.”


I don’t recommend the kit as a first-100-day guide. It is great at providing a lot of good information but is short on recommending an actual day-to-day to-do list. Plus, it offers far more than can be accomplished in 100 days. And the document is especially lacking in that it has no recommendations regarding talking with or involving grandparents.


Following is my suggestion for a “First-100-Days-After-Diagnosis List for Grandparents.”

This is a list specifically for grandparents. The 8 items are listed in priority order – and, if schedule allows, in the order they might be accomplished. And it is reasonable to expect that all can be accomplished in 100 days.


ONE – Resolve your issues regarding denial and blame. Denying an accurate diagnosis will be counterproductive for your grandchild because denial will result in delayed therapies. Accepting an autism diagnosis that may later prove to be wrong won’t do any harm at all. Even if therapies begin, they will be equally helpful to a child who is later found not to have autism. It’s useless to assign blame for autism, because nobody yet knows what causes autism. The one thing that is known is that genetics very likely play a role.


TWO – Have a talk with your grandchild’s parents about the following three things.


Lifetime Responsibility of Time and Energy – Discuss with the parents how much you can participate regarding your time and energies.

Lifetime Financial Responsibility – Discuss with the parents how much you can participate regarding money.

Lifetime Social Needs – Discuss with the parents how much you’re willing to participate trying to gather friends and persons who will love your grandchild through activities with others (faith organizations, sports teams, support groups, etc.).


THREE – Offer ways that you are willing to help beginning NOW – such as providing money for specific needs, providing caregiving as per your specific availabilities, doing online research (finding therapy providers, learning “solutions” for specific symptoms such as meltdowns, investigating schools, etc.)


FOUR – Start telling friends. Our friends regularly ask us grandparents about our grandchildren. Immediately after the diagnosis is the time to begin saying, “She has recently been diagnosed on the autism spectrum, and we are so grateful for the diagnosis. That explains some of her challenges and we can now start engaging appropriate therapies to help.”


FIVE – Join your local nonprofit autism organization (if there is one) and plan to get involved by volunteering for something. You’ll meet good folks and learn good things!


SIX – Join the following autism grandparents support group on Facebook: Grandparents of Children on the Autism Spectrum. It’s well run, informative, and has Zoom meetings that are helpful and supportive.


SEVEN – Order and read Nancy Mucklow’s book, Grandparent’s Guide to Autism Spectrum Disorders.


EIGHT – Familiarize yourself with the website of Autism Speaks: www.autismspeaks.org. It’s the BIG national autism organization and the website has information on just about everything.


The longer we grandparents wait on accomplishing this list, the more difficult it can be. Our involvement can provide significant benefits for our grandchildren – the sooner the better!


Gene Perret once said, “What a bargain grandchildren are! I give them my loose change, and they give me a million dollars’ worth of pleasure.”


I’m sure you understand exactly where he is coming from. But perhaps you are looking for a way to provide for your grandchild with some of your loose change. An ABLE (Achieving a Better Life Experience) account is a great vehicle for grandparents and family members to save for their loved ones with a disability.


What is ABLE?

The ABLE ACT was signed into law in 2014. Since its passage, 44 states and D.C. have established programs that provide tax-free savings accounts for individuals with disabilities. These programs allow for individuals with a disability to save without impacting resource-based benefits such as SSI, SSDI, or Medicaid.


Nationwide, 101,000 ABLE accounts have been opened, with an average savings in each account of $8,600 and a total amount of $874 million dollars.



How do ABLE accounts work?

ABLE accounts are limited to $15,000 in annual contributions unless the individual is working and not contributing to a retirement plan. Accounts can have up to $100,000 in balances without impacting SSI or SSDI and these funds will not affect Medicaid. If the individual is not receiving SSI or SSDI, they can save more than the $100,000 (amount depends on what state plan you open).


What can the funds be used for?

ABLE participants may use the savings for a wide range of qualified disability expenses - from medical costs to education, assistive technology, service animals, housing, transportation, basic living expenses and more.


Alabama ABLE Savings Plan

The Alabama ABLE Savings Plan has a low annual fee of $35.00 and is administered by the State of Alabama Treasurer’s Office. Contributions into the account can be deposited into an FDIC savings account or one of three Vanguard portfolios. Contributions may also be deductible for Alabama residents up to $5000.00 per filer on their state income tax. Remember to check with your own state for any tax benefits or fee expenses.


With greater savings comes increased financial security and flexibility for the disability community – so that loose change in your pocket can lead to some big change in your grandchild’s future. ABLE accounts provide a great way to make those dreams into a reality.


About the Author

Anita Kelley is the Savings Director for the Alabama State Treasurer’s office which oversees the Alabama ABLE Savings Plan. Visit alabamaable.gov or call 1-833-711-2253 to learn more and start investing in your loved one’s future.

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