7/6/22

It is not uncommon for children with ASD to have difficulty sleeping.  Some of the reasons may be lack of routine, anxiety or sensory overload.  I have worked with several clients who complain that their child is not going to bed at a regular hour or are waking up several times during the night causing them to have difficulty waking up in the morning or falling asleep during the day.  Another common problem presents when the child wants to sleep with their parents; sometimes all night or at some hour during the night.  All of this then impacts the parents sleep and this exhausting cycle can lead to a parent’s desperate cry for help.   From a study published in  2021 by the National Library of Medicine, entitled, A community-based sleep educational intervention for children with autism spectrum disorder it mentions that, Bedtime resistance, anxiety, sleep onset delay and daytime sleepiness may be related to the core symptoms, but not be related to the developmental level in ASD children… sleep hygiene education is as important as the treatment of biological factors.

These sleep problems can cause a series of effects. Sleep disorders may adversely affect children’s daily function, affecting behavior, learning, memory regulation and cognition [17–20]. It may also cause emotional problems such as aggression, irritability, over-reactivity and depression [21, 22]. Moreover, disorders also negatively impact ASD symptoms. For example, ASD children with sleep problems showed more severe social skills deficits, and they scored lower on social tests 

Because it is difficult to know what factors are causing the trouble for your child, you might feel lost.  In 2019 from Bmj Journals comes An evidence based study entitled: Sleeping sound with autism spectrum disorder (ASD): Sleep problems are a characteristic feature of children with autism spectrum disorder (ASD) with 40% to 80% of children experiencing sleep difficulties. Sleep problems have been found to have a pervasive impact on a child’s socio-emotional functioning, as well as on parents’ psychological functioning. 

But there are some changes that you can make to increase the likelihood that your child will sleep successfully and regularly.   The approach that I want to address here is behavioral and follows the idea of creating a set routine for bedtime that encompasses several variables which when done with consistency and being mindful of how your child is reacting you can respond accordingly and lead them in the direction of sleeping alone and sleeping more fully.  When behavior and environmental changes don’t help there may be cause to speak with your physician about a pharmacological approach. 

Again from the 2019 BMJ study, Both behavioral and pharmacological interventions are commonly prescribed to treat sleep problems in ASD; however, we have much to learn about the efficacy of these treatment approaches.

Association for Child and Adolescent Mental Health in March of 2022 relates that

While pharmacological interventions such as melatonin are commonly prescribed to assist families in reducing sleep problems, the National Institute for Health and Care Excellence (NICE) guidelines recommend behaviourally based sleep interventions as a first-line treatment (NICE, 2013). Nevertheless, empirical evidence for the efficacy of behavioral sleep interventions in autistic children is limited.

My first inclination is to create a behavior program that is specifically targeted at changing undesirable behaviors or practices.  That said, when medication or herbal remedies (I am not promoting either) are recommended by a physician, you have to decide what’s best for your child and your family.  Never feel pressured.  It’s all about 2 things; your child’s health and your ability to cope. 

When establishing a set routine for bedtime just be mindful that the longer you wait to do so the harder it will be down the line.  It is an initial sacrifice of time and sleep deprivation to some degree,  but you will get past that by being committed and consistent and your child will adapt. 

Implementation of nonpharmacotherapeutic measures such as bedtime routines and sleep-wise approach are the mainstay of management.

These treatment strategies along with limited regulated pharmacotherapy can help improve the quality of life in ASD children and also decrease the family and parental distress.

It is also common for ASD children to want to sleep with their parents.  The best thing for you to do, if this is a problem, is to encourage your child to sleep in their own bed.  To do that you’ll want to create an inviting and calm environment along with a consistent routine.

It is helpful to acknowledge that you understand that your child does not want to sleep alone and reassure them that sleeping in their room with the door open and your door open means that you are all still connected.  But Mom and/or Dad need(s) to sleep in their bed and they need you to sleep in yours.  And you will help to make this happen.

The following routine is suggested.  You can alter it however you’d like and add in steps that you know will appeal to you child.  

Routine: 

1. Wind down ½ hour before bedtime; no ipads, etc.  
2. Review the routine that can be printed out in steps or read as a Social Story. 
3. Give a 10 minute warning.
4. Proceed with pre-bedtime prep; wash up, change clothes, brush teeth, etc.
5. Dim lights in the room. 
6. If possible (and desired by your child) have some quiet music or environmental sounds playing. 
7. Start a sand timer (20 minutes or whatever you prefer)
8. Read a calming book
9. Foot massage or some kind of relaxing pressure
10. *Lay with her (see below) *#10: In the first several days laying with your child is ok but you will want to gradually, over the course of the coming weeks, move away from your child using a chair, creating distance and giving as little direct contact as you can, according to Andrea Babich from Autism and Sleep. Ten possible strategies: Gradually distance yourself from your child once they have gotten into bed, then keep your visits back to their room brief. Gradually decrease the amount of attention you direct toward your child such as talking, eye contact, facial expressions, etc. while you are increasing your distance away from them.” until you are able to say goodnight and leave the room.
11. When timer runs out you will leave with the door open

Just a quick note about the timer indicates how long you’ll stay with your child before leaving. The 20 minutes encompasses the massage, a story and laying with them. I would start on a Friday night so if you don’t sleep much you have the weekend.  It’s important initially to keep the same routine on the weekends. 

From a study on Autism and Sleep Disorders in 2015, After the bedtime routine is done and the child is in his bed or crib- but is upset and obviously not sleeping, wait a few minutes and then go back into the child’s room to check on him/her. Checks involve going back into the child’s room and briefly (not more than a minute, preferably less) touching, rubbing, or maybe giving a “high five,” “thumbs up,” or hug for an older child who better responds to these gestures. Gently but firmly say, “it’s okay, it’s bedtime, you are okay”

If you are able to get your child into bed and leave the room that’s great but we all know that it isn’t so easy and it’s not overnight. Andrea Babitch again states, Training your child to fall asleep alone should be done gradually over the course of a few weeks. 

A great idea I came across from Autism Speaks is A Bedtime Pass. According to their article on the subject: 

Some children have a difficult time staying in bed. The parent puts the child to bed and, before you know it, the child is crying out or up again. One effective tool to help children learn to stay in bed is the “bedtime pass.”1 A bedtime pass is a card that is given to the child at bedtime that may be exchanged for one “free” trip out of bed or one parent visit after bedtime. If the child does not use the card during the night, he/she may exchange the card for a special reward in the morning. The bedtime pass can be traded for a drink or to get out of bed. If I ask for a drink of water or get out of bed, I have to give them the bedtime pass. When I am able to stay in bed all night, I get to keep the bedtime pass. This is a good thing! In the morning I can trade the bedtime pass for a treat.

Here’s are 4 practices to follow at bedtime: 

1. Set a consistent bedtime each night. 
2. Before bed review the routine and ask your child to retell it to you so they begin to internalize what is expected (if they are non-verbal you can use pictures from their communication device, social story or a picture schedule that you’ve created).  
3. You can ask how they feel each night and again, acknowledge their feelings and assure them that you are there for them.  
4. Building a reward system into bedtime to help with this transition is a great idea. Earning something very special can be highly motivating. 

As mentioned it may be necessary to incorporate a pharmaceutical intervention in more severe cases, but I truly feel that if you can be consistent with an established routine you will see an acclimation in general cases of ASD.  I have attached a link to an Autism Speaks page on tips for improving sleep in your ASD child on the resource page of my website. 

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It’s time now for: A Tip Of The Cap: your Exceptional Needs Parenting Tip 

Today’s tip comes from Autism Speaks and it is related to bedtime routines and Schedule Boards:

Some children are not able to use a visual schedule that uses words, photos, or icons. It may help to use objects instead.

Here’s an example: Here is how to use an object board. A sample bedtime routine might include using the toilet, taking a bath, washing hair, brushing hair, getting a massage, and listening to music. You would then put the following items near the bathroom or bedroom: a roll of toilet paper, a bar of soap, a bottle of shampoo, a hairbrush, a bottle of lotion, and a CD. Your child would get each object before the start of an activity and use this to guide his or her actions. It may be helpful to save a special object just for bedtime. This might be a special blanket, pillow, or stuffed animal. Once your child has this favored object, he or she should go into his or her bed. Even if you do not use objects, write down your child’s schedule so that you are going through the same steps each night and staying with a routine. Use single words or two-word phrases to label or describe what you are doing (“Bath time”, “Wash hair”, “Go sleep”, etc.).

Peace and Keep Rising!

6/13/22

What I love about this profession is the myriad of issues that can arise and still challenge me in new ways.  Because I was in the classroom for most of my career there were scenarios that parents had to deal with outside of school that didn’t cross my path. But now that I am dealing directly in homes or virtually with moms and dads like yourself, I am being presented with your daily challenges and some of them are obviously upsetting for you as you learn your child and wonder what to do when these situations arise. 

Hoarding, according to the American Psychiatric Association when referring to hoarding disorder is explained as, People with hoarding disorder have persistent difficulty getting rid of or parting with possessions due to a perceived need to save the items. Attempts to part with possessions create considerable distress and lead to decisions to save them. The resulting clutter disrupts the ability to use living spaces 

In the first example I’d like to share, a parent has been trying to manage her child’s hoarding of clothes and toys and his need to take everything out of the closet and drawers and cover the bed leaving only a small space for his body.   We have spoken about labeling the drawers and closet with pictures of the articles inside so that her child knows where things are in hopes of reducing anxiety over their whereabouts.  And by having the spaces identified, when the clothes and toys are out, he will know where they go if it’s possible to get him to put things away.  The thinking for this is if it is known that everything goes in the same place it will also reduce the anxiety of disorder.  

A possible problem arising from this approach is that this solution is not satisfying the need to be surrounded by everything he owns that he must see and possibly even need to feel.  

Another suggestion was to try and set a time limit for allowing his things to be out and adorning his bed.  This way it is understood that there is a beginning and an end point.  Built into this would be a reward system that recognizes cooperation in successfully putting away everything at the designated time in it’s designated place.  

This could include earning a small reward at the moment the desired behavior occurs or by accumulating tokens over an agreed upon time interval, for example every two days which can then be widened to every several days, and so on, as the behavior begins to improve, leading to a more meaningful reward.  For example, if you decide that you will collect tokens after two days of successfully following the behavior plan, then your child can get ice cream or something comparable.  This can gradually expand to every 4 days and then expand again.  You will know when to increase the time between rewards when you see the behaviors change.

Here as well, you can begin with allowing the clothes to be out for 12 hours and then reduce the time frame after a week and then again as you witness the hoarding diminish.  

The goal again, as always, is to have the desired behavior without needing to reward with tangible sources, but that takes time, consistency and patience. 

And know that this is no magic pill and depending upon the severity of the behavior there may exist other underlying dysfunction that may then require the intervention of a psychiatrist.  And there is nothing wrong with that.  It’s just where your child is.  It’s ok:)

From Autism Speaks, according to psychologist Micah Mazurek, of the University of Missouri’s Thompson Center for Autism and Neurodevelopmental Disorders : Generally, professional help is needed when hoarding becomes so extreme that it interferes with a person’s daily functioning. If you sense that this is the case with your son, I strongly recommend working with a psychologist or other behavioral health professional with expertise in treating compulsive behaviors including hoarding.

This treatment could include medication or cognitive behavioral therapy which can help with the anxiety by helping the individual, “ learn to discard unnecessary items with less distress—diminishing their exaggerated perceived need or desire to save these possessions. They also learn to improve skills such as organization, decision-making, and relaxation;” according to the American Psychiatric Association.

During the time working with this case I proposed the idea of attempting to recycle old clothes that the mom wanted to get rid of which were being hoarded, by donating them.  The idea would be that the mom would select something of her own and bring her child to a donation facility and hand in the article of clothing to see how clothes are reused and modeling that it is ok to let go.  

My idea was to donate “clothes” plural.  The mom came up with the idea of one article at a time, which is brilliant, and we decided on her proposal of taking an article of clothing each; one from Mom, one from her child and one from sibling, and each day driving to donate the piece.  Afterwards there will be a reward, which again, you can decide what is realistic and financially practical for you.  This can be a choice of rewards that you decide on and offer to your child.  

Some reasons for the hoarding can be associated with anxiety and depression, the inability to make a decision on what to keep and relinquish or the stress of not knowing how to organize one’s space.  These can paralyze your child and cause them to act out when you suddenly step in and try to get rid of things you know to be either junk or old or even dangerous.  

Well planned strategy with a clear explanation of the cleaning and relinquishing process is critical to children and adults who possess an inability to live without things being a certain way.   Including social stories is a great way to show a process and reduce stress.  Modeling the behavior you want to see can be helpful.  Have your child help you clean your room.  Showing videos of cleaning up a bedroom or going to a donation center to see where clothes go can expand experience and understanding and possibly help to reduce the anxiety of “losing” an object when knowing it has a place and is not “gone.” 

It’s not easy to know what might trigger the hoarding behavior but by paying close attention to your child you may notice that something is happening to cause heightened stress, anxiety and depression leading to your child turning inward and needing to secure their environment. 

From the National Library of Medicine in an article on Hoarding in Youth with Autism Spectrum Disorders and Anxiety in May of 2016; hoarding severity was associated with increased internalizing and anxiety/depressive symptoms, externalizing behavior, and attention problems. Discarding items was associated with internalizing and anxious/depressive symptoms…Hoarding decreased following cognitive-behavioral therapy.

Hoarding is different from obsessions. From Clutterhoardingcleanup.com; obsession are Recurrent and persistent thoughts, urges, or images that are experienced, at some time during a disturbance, as intrusive and unwanted, and that in most individuals cause marked anxiety or distress. These thoughts attempt to be neutralized by performing a compulsion.

• Hoarding is the Persistent difficulty discarding or parting with possessions, regardless of their actual value.
• This difficulty is due to a perceived need to save the items and to distress associated with discarding them.

From MentalHealth.org;  individuals with hoarding disorder often describe their acquisition behavior as a compulsion, experienced as strong urges. They feel driven to acquire the desired items and experience significant anxiety if they do not. A difference between OCD and hoarding disorder is that in hoarding disorder the compulsive acquisition of items results in a “pleasurable” feeling. This is not the case for compulsions in OCD.

In another example of hoarding behavior, I have a client who has a room filled with paper bags spilling over.  The bags are sponging up the space making it difficult to move around in the room and are a source of distress for the mom.  The child likes to play “school” in the room and recently the mother discovered that the bags are acting as “backpacks” for the “students” the child is pretending to teach.  These bags will not be parted with and any conversation of such causes resistance that could lead to a tantrum.  

Knowing the reasons for things is a tremendous help. Whereas with the first example, we don’t necessarily know the cause of the hoarding.  We have some ideas but because the child is, for the most part, non verbal when expressing the whys of her behavior, the second child is verbal and may be able to say or hint at what is triggering the hoarding.  

With this new information I suggested that hooks be installed in the bedroom and cheap, synch bags take the place of the paper bags.  Acknowledging that not everything can fit, the hope is that when the bags are presented as more realistic examples of “school bags,” the child will appreciate that and accept it’s capacity limitations.  I will follow up on how this goes and let you know. 

As with attempting to harness behaviors of all kinds it is important to pay attention to your environment and make needed changes that may be causing sensory disruptions in your child leading to anxiety that may domino into different forms of obsessions and compulsions. Structuring your home is also so important in creating a safe and predictable space affecting stress reduction in your child. Structuring activities is helpful at redirecting consuming compulsions.  And from the National Autistic Society, Set boundaries: If you need to, set clear, consistent limits – for example, ration an object, the time a person should spend talking about a subject, or the places where they can carry out a particular behaviour. Behavioural change is most likely to be successful and the person less likely to be distressed if you start small and go slowly. Increase time restrictions and introduce other limits gradually. 

I see the toll taken on the nerves of parents regarding hoarding.  I want you to be comforted knowing that this behavior is common and that there is a reason for it.  Also, that there are solutions.  If you can give yourself time to observe antecedent behaviors you will have a jump on how to intervene best.  If you find that the behaviors persist or get worse, don’t be afraid to ask for help.  It is out there.  You don’t have to reinvent the wheel and, most importantly, you have a right to it.  If there is anything you feel I can help you with, feel free to reach out.  

Peace and Keep Rising!