What are the autism diagnosis levels?

The Diagnostic and Statistical Manual of Mental Disorders, 5th Edition, defines Autism Spectrum Disorder with three levels to help healthcare professionals, parents, educators and others determine the amount of support and treatment or therapies a person on the spectrum needs. It’s not a perfect system, but it is better than trying to define the amount functionality an autistic person has.

Here are the three levels:

• Level One: Requires Support
• Level Two: Requires Substantial Support
• Level Three: Requires Very Substantial Support

What do the autism levels look like practically?

So, it’s great to have the autism levels, but what do they mean and how do they look in a practical sense to help you and your child’s doctor define where your child falls on the spectrum?

Autism Level One: Requires Support

Autistic children on Level One require some support but not a lot. This is where my son J falls on the spectrum. He was originally diagnosed with Asperger’s Syndrome (no longer its own diagnosis), so we used to note he was “high functioning.” Yet, that didn’t really accurately describe him because in some ways he was but in other areas he needed more help. We obtained that help for him through speech therapy during elementary school, occupational therapy, cognitive behavior therapy, medication and job coaching.

How does Autism Level One translate practically? Those on Level One generally:

• Need some help in improving their communications with those who are neurotypical, especially their peers
• Speak well, in complete sentences and comprehensively, but they tend to fatigue during long back-and-forth conversations with neurotypicals
• Tend to mask long-term to better fit into their environment (which can lead to autistic burnout)
• Have difficulty knowing the right thing to say or do in social situations
• Find they have a lack organizational and other executive function skills
• Focus on special interests
• Have some challenge in shifting from one activity to another and can be inflexible in actions and thought patterns at times
• Tend to persevere, or focus on something longer than necessary
• Experience some sensory issues
• Will usually become independent eventually, but it may look different than their neurotypical peers

Those on Level One will need some therapies and treatments to help them function and communicate better in the world. They also will need some accommodations at school to help them be more successful academically.

Autism Level Two: Requires Substantial Support

Individuals who are on Level Two require substantial support. Traits and abilities in these individuals can include:

• Have difficulty communicating in ways that neurotypicals understand, using fewer words and noticeably different speech patterns
• Socialize in ways that neurotypicals don’t comprehend, such as walking away from a conversation and many times missing facial and body language cues from others
• Are focused on very specific interests that may be considered strange or even bizarre by someone who is neurotypical
• Tend to have more challenge shifting from one activity to the next one
• Use more excessive stimming behaviors to self-regulate
• Have more substantial sensory issues

Those on Level Two will require more support than those on Level One. They will need more school accommodations, and additional therapy and treatment will be needed to help them function better.

Autism Level Three: Requires Very Substantial Support

Those on Level Three are more severe or profound in their autistic traits and have lower capabilities. Most autistic people who are Level Three will need others to care for them their entire lives.

Individuals on Level Three may:

• Be non-verbal or only use echolalia to communicate, which may require them to use an augmented and alternative communication (AAC) device to help them communicate
• Interact with others on a limited basis, mostly to have a need met
• Prefer to do things alone instead of with others
• Have significant social deficiencies and little interest in developing friendships
• Show more stimming needs such as rocking, spinning and  other such behaviors
• Become distressed when switching tasks or activities
• Be unable to mask and fit in with others
• Have difficulty completing daily living activities by themselves

Autistic children and teens on Level Three are most likely to be in special education classrooms at school or even receive only one-on-one instruction to help with basic academic and more life skills. They also will benefit from a greater array of therapies and treatments.

Why are the levels better to use than functionality in explaining autism to others?

As a parent, I find using the levels can be better in explaining my son and his abilities to others. Trying to use high or low function to describe our autistic children’s capabilities is difficult. That is because they can be higher functioning in some areas, and then need much more support and considered lower functioning in other areas. And then what does high functioning or low functioning really mean and what about all the people who are in the middle of those two bookends?

So many people who aren’t educated about autism tend to rely on stereotypes they see in the media. I did my capstone project for my master’s degree on evaluating the types of descriptions that media use to characterize autistic individuals. My research showed three primary characterizations: patients, savants and victims. Even though “patients” were the most common type, the media primarily portrayed those with more Level Three autism in their stories. Being able to use these more defined levels can help parents better understand and explain where their child falls on the spectrum.

Using the levels is also how the medical community now determines the level of support a person needs. It can help you as a parent know more about the types of care and services you will need for your child.

Do you use the autism levels to better understand and explain to others about where your autistic child falls on the spectrum? What has been your experience? Leave a comment below so that we can share and encourage one another on this journey.

Additional resources

Looking for more information? Take a look at these resources available.

Autism Spectrum Disorder (ASD): Autism Types, Diagnosis, Symptoms, Treatment, Causes, Neurodevelopmental Disorders, Prognosis, Research, History, Myths, and More! Autism Explained (affiliate link)

Not Atypical Motherhood: The Guide for Navigating a Child’s New Autism Diagnosis (affiliate link)

Talking with Your Child about Their Autism Diagnosis (affiliate link)

My Awesome Autism: Helping children learn about their autism diagnosis (affiliate link)

Navigating the Spectrum: A Guide for Autistic Parents of Autistic Children (affiliate link)

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What is hyperfocus for people with ADHD?

A pediatric behavioral health specialist at the Cleveland Clinic Dr. Michael Manos describes hyperfocus as “the capacity for a person to engage in a task or an activity to the exclusion of everything else.” The Cleveland Clinic website notes, “Some people describe hyperfocus as similar to dissociation — a feeling of disconnection from themselves and their environment. Others describe it as laser focus, a kind of tunnel vision. Still other people describe hyperfocus as euphoric.”

While anyone can have hyperfocus at times, it’s different with those who have ADHD. ADHD is inherently about the lack of control of focus – which is why it’s called “attention deficit.” Anyone can get into the “flow” of focusing on a single thing. However, they could move their attention easily to something else if they need to do so. It’s different for someone who has ADHD. They get hyper focused on something, and they cannot easily focus on something else even if they want to.

The downside of hyperfocus is that the person can be fixated on the activity for so long that they do not complete tasks or tend to relationships that need to be done. Children with ADHD may be reluctant to stop doing their activity to do things that need to be done. That could include schoolwork or homework, time with family, meals, chores, bathroom breaks, or other tasks that cannot wait.

I see this with my son J, who has both ADHD and autism. He may get so focused on something that it’s all he can do and think about. He really struggles with putting his attention on another task.

How is hyperfocus different or similar to special interests for autism?

When you have a child who has both autism and ADHD, you are dealing with both special interests (some refer to those as hyperfixations) and hyperfocus.

With autism, many have special interests that usually last a long time. Some of those interests can last for years, while others may be only months. My son J’s first special interest was garbage trucks, and that began at age 3 and lasted well into elementary school. While it’s not a primary interest for him anymore, he still gets excited to see garbage trucks on the road or in our neighborhood (and he is in his late teens now). 😀 Special interests usually include a lot of different activities related to the interest topic.

Hyperfocus is narrower to a particular task or activity and the period of time the person does it. It can definitely be related to the special interest. My son’s interest right now is on personal computers (PC) and gaming. He loves to research and talk about building PCs and everything that goes into it. He also loves gaming, and he can easily spend hours playing online with friends. That can be hyperfocusing on the specific activity he is doing.

How can you help your child with ADHD manage hyperfocus?

So how can you as a parent help your child manage their hyperfocus so that it doesn’t keep them from doing the things that need to be done? Here are some suggestions.

1. Use a timer

You want your child to do things they enjoy, but there may need to be some limits on how much time they spend on it. If your child is playing a video game, let them know how much time they have and set a timer. Once the timer goes off, then they need to complete homework, chore or whatever else may need to be done. Remember that transitions are difficult for autistic children with ADHD, so be sure to give them a sign before their time is up to make the transition easier.

2. Agree on timing of activities when your child tends to be hyperfocused

If your child usually becomes hyperfocused when doing a favorite activity, build it into their routine and agree on when they can do the activity. For example, maybe your child can watch a favorite show after they complete a portion of their homework or after they take their bath in the evening. Routines are really important to autistic/ADHD children, so building the activity into their routine can be helpful.

3. Make boring tasks fun

We all have a hard time focusing when a task is boring. Instead, make it fun. Let them turn on their favorite music while they do their chores. Turn chores and tasks into a game. Hide treats and treasures for them to find. For some more creative ideas, check out this article.

Does your child with autism and ADHD hyperfocus on certain activities? What has worked in helping them to better manage it? Leave a comment below so that we can share and encourage each other on this journey!

Additional resources

Want more information about parenting a child with ADHD? Check out these resources to learn more.

ADHD Parenting a Complex Child: Guiding Your Child with Love – A Journey to Become a Yell-Free and Frustration-Free Parent (affiliate link)

What Your ADHD Child Wishes You Knew: Working Together to Empower Kids for Success in School and Life (affiliate link)

Parenting ADHD Now!: Easy Intervention Strategies to Empower Kids with ADHD (affiliate link)

ADHD Decoded- A Comprehensive Guide to ADHD in Adolescents; Volume 2 (affiliate link)

The Frazzled Parent: Learning 19 essential skills to teach yourself and your Pre-Teen ADHD Child to successfully navigate today’s short attention span world (affiliate link)

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How do you define “aggression”?

First, let’s define aggression. According to the American Psychological Association’s (APA) dictionary, aggression is “behavior aimed at harming others physically or psychologically. It can be distinguished from anger in that anger is oriented at overcoming the target but not necessarily through harm or destruction.”

From an emotional perspective, the APA dictionary notes “affective aggression involves an emotional response that tends to be targeted toward the perceived source of the distress but may be displaced onto other people or objects if the disturbing agent cannot be attacked.”

From what I’ve seen, when autistic people become aggressive, it’s more related to “affective aggression” rather than hostile aggression, which is “when such behavior is purposively performed with the primary goal of intentional injury or destruction” (APA Dictionary).

Is aggression more prevalent in autistic children?

According to SPARK (Simons Powering Autism Research), they have found in their research that autistic children can tend to have more aggressive behavior. However, being aggressive is not a trait or sign of autism.

On their website, they note, “Aggression, such as hitting, biting, scratching, hair-pulling, or kicking another person, is relatively common in children on the autism spectrum. A study of children and teenagers with autism found that 68 percent had been aggressive to a caregiver, and 49 percent had been aggressive to someone else, at some point. More than half of the youth studied were currently having mild to severe aggressive behavior.”

They also stated, “In the general population, young children often become less aggressive as they get older and learn better ways to express themselves. But for some with autism, aggression persists through the teen years into adulthood. One study found that 15 to 18 percent of adults who have autism and intellectual disability showed aggression. Another study of autistic adults found that 5 percent of women and 14 percent of men had aggressive behavior over time.”

What causes aggression in some autistic children?

So what could be causing aggressive behavior in your autistic child? There are a few consistent reasons why autistic children and teens could become aggressive:

• For children who are non-verbal or have difficulty communicating, aggression is a way for them to communicate their needs or their dislike for something.
• Sometimes, aggressive behavior comes not from the autism but from depression, anxiety or other mental health problems or conditions during an emotional breakdown. Some autistic people have these conditions in addition to autism. (Research has shown that aggression is more linked to psychiatric conditions rather than autism.)
• Aggression can be a result of sleep issues and inattention.
• Some autistic people tend to dwell on negative feelings and thoughts, and they may renumerate those in their head and verbally. This could lead to aggressive behavior.

Our son J has aggressive behavior occasionally, but we believe it’s more related to his depression than autism. While I won’t share details because they are too personal to him, I will say from a parent perspective, it’s so hard to go through these times. Our first concern is that he doesn’t harm himself or one of us. We try our best to de-escalate his emotions and help him gain control of them. For parents who go through this continually with their child, teen or young adult, I understand just how devastating and life changing it can be for them.

What are the signs my autistic child may become aggressive?

So what signs or triggers should you be looking for that could result in your child having an episode of aggressive behavior?

• If your child’s routine or ritual is interrupted, that could result in some aggressive behavior because your child is unhappy about it and wants to continue the routine they prefer.
• Your child or teen may show aggression if they are upset and lose control of their emotions.
• They could become aggressive if they are experiencing high anxiety in a situation.
• Your child may have aggressive behavior if they are angry and have difficulty expressing their anger verbally.
• They may become aggressive if they are frustrated over a problem they cannot solve.
• Your teen or child may feel aggression if they have sensory issues that are bothering them and cannot relieve the overwhelm from them.

What should I do when my child becomes aggressive?

Ideally, the best way to handle aggression is to try to avoid triggers that can cause it to begin. That could include:

• Allowing your child to stick to their routines as much as possible. If you need to change them, give your child plenty of notice and talk about the reasons why they have to change. You can also offer some type of reward if they handle the change well.
• Providing therapy or other services to help your child improve their communication and social skills.
• Teaching your child how to identify and name their emotions along with coping skills such as deep breathing and other ways to calm themselves if they feel like they are losing control.
• Identifying a safe place for your child at home, school and other places where they can go to calm down if they feel overwhelmed.
• Offering a pillow or punching bag to hit or kick if your child is angry can help them alleviate their aggression in a way that won’t hurt themselves or others.
• Talking to your child’s doctor if the aggression is extreme to determine if there are treatments that may be beneficial to your child that you have not already tried or considered.

What should you do if your autistic child or teen is in crisis?

As our children get older, they are bigger and harder to manage if they are very aggressive. In those cases, their behavior can become extreme and put themselves and you in danger. If that happens, you can call 988 or 211 for help, anywhere in the United States.

988 is the national suicide hotline and mental health crisis lifeline number from Mental Health America. When you call, counselors can help you through a mental health emergency. Their website notes you can “call or text 988 or chat 988lifeline.org. You can also reach Crisis Text Line by texting MHA to 741741.”

211 is a resource hotline from the United Way available in most states. Their website notes “if you need assistance locating long-term mental health resources, talking through a problem, or exploring mental health treatment options, call 211 to speak with a live person who can help.”

If your situation is an emergency in which you or your child is in imminent danger, you should call 911 for immediate assistance. You can explain your situation and that your child or teen has autism. Also be sure to ask if they have a mental health counselor or other person who can help with assisting first responders. More first responder agencies are making them available.

Additional resources

If you need more information to dive deeper into this topic, take a look at some of these resources available.

People with Autism Behaving Badly: Helping People with ASD Move On from Behavioral and Emotional Challenges (affiliate link)

No Fighting, No Biting, No Screaming: How to Make Behaving Positively Possible for People with Autism and Other Developmental Disabilities (affiliate link)

15-Minute Focus: Anger, Rage, and Aggression (affiliate link)

Breathing Exercise Cards for Kids: Calm and Focus (affiliate link)

The Anger Workbook for Teens: Activities to Help You Deal with Anger and Frustration (affiliate link)

What has worked for your autistic child if they become aggressive? Leave a comment to share and encourage one another along this journey.

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Why children with autism and ADHD have difficulty controlling negative emotions

I have written a lot lately in my blog posts about executive function skills. Believe it or not, emotional control is also part of that skill set. What research has shown (and our own experiences as parents have proven!) is that our children with autism and ADHD usually lack executive function skills, and this is another one of those.

Our children on the spectrum are dealing with a lot of situations that can cause negative emotions. It could be a social situation they misinterpret with friends. A child at school could be teasing them about their stimming. They may be dealing with sensory issues that cause them distress. Your child may be feeling autistic burnout and emotional exhaustion.

Emotional control is one of our son J’s executive function skill deficits, and he is well aware of it. It is something he actively is working on, and it’s improved over the years. His speech therapist in elementary school worked a lot with him on emotions, which helped him to better identify emotions both in himself and others. While it’s been a struggle, he has gotten better about understanding when his emotions are getting out of control and some things he can do to calm down and gain control of them. Sometimes, he will go outside and walk around the yard. Other times he takes a walk in the neighborhood. At times, he will listen to music to calm down.  J will do some deep breathing if he is in a situation where he cannot walk away from it. At school, he has learned to seek out help from his resource teacher or guidance counselors. I’m glad his school offers a Zen room where he can go as a safe place when needed.

Ways you can help your child gain control of their emotions

If your autistic child is dealing with a negative situation, how can you help them learn to gain emotional control? Here are some ideas.

1. Help your child identify the emotion they are feeling

Sometimes, children with autism do not understand the emotion they are feeling. This happens often when they are younger. You can use feelings charts or social stories to help them understand different types of emotions while they are calmer and open to learning. When they are in the moment, try to stay calm yourself and help them name the emotion they are feeling.

2. Teach them that feelings pass

When we are feeling a negative emotion, we can think it will last a long time. Yet, it will pass within a reasonable amount of time in most cases. (If you think your child is dealing with chronic depression or anxiety, that is another matter, and you should seek professional help for your child.)

3. Assist your child with learning coping skills

Certain actions such as deep breathing or counting to 10 can help give our minds and bodies the time needed to calm down. If your child is angry at another person, teach them to walk away and go into another room until the negative emotion subsides. Need some other ideas for coping skills to teach your child or use with them? Check out this article.

4. Model emotional control yourself

Children learn from the adults around them. If you cannot control your own emotions, then it’s difficult to expect your own child will do it. If you have problems controlling your emotions, then seek help with a professional or through self-learning.

5. Role play “what if” scenarios

Role play can be an effective learning tool with autistic children and can help them learn to gain emotional control. Write down several scenarios in which your child may encounter and have negative emotions. Role play each of them and discuss what actions they could take in each to be in control of their emotions.

Resources

Need more information about emotional control for your autistic and ADHD child or want additional ideas on teaching them regulation? Check these out.

I’m Just a Kid: A Social-Emotional Book about Self-Regulation (affiliate link)

The DBT Skills Workbook for Teens: A Fun Guide to Manage Anxiety and Stress, Understand Your Emotions and Learn Effective Communication Skills (affiliate link)

MySELF – Feelings & Cooperation (affiliate link)

Have you had success teaching your autistic and ADHD child emotional control? If so, leave your tips in the comments so that we can share and encourage one another on this journey!

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What is perspective taking?

Perspective taking is a person’s ability to understand someone else’s emotions, thoughts, needs and wants.

It is related to Theory of Mind. The American Psychological Association defines Theory of Mind as “the understanding that others have intentions, desires, beliefs, perceptions, and emotions different from one’s own and that such intentions, desires, and so forth affect people’s actions and behaviors. Children show the rudiments of theory of mind as toddlers, have a limited understanding of the relation between belief and action by age 3, and can begin to infer false beliefs in others by around age 4.”

Many people with autism have difficulty with Theory of Mind and perspective taking due to deficits in their social and communications skills.

Importance of Theory of Mind and perspective taking

Theory of Mind and perspective taking play important roles in relationships and the ability to interact well with others. Developing these is imperative to understanding others’ feelings and intentions, responding appropriately in social situations, communicating effectively, managing conflict and more.

Our son J has struggled with both Theory of Mind and perspective taking throughout his life. As he has gotten older, it has improved some. While he has much more awareness now of his own thoughts, feelings and beliefs as a teenager, he still has a difficult time sometimes understanding how and why others may feel differently about a situation than he does. My husband and I spend time with him talking through situations and helping him to better understand why someone else thinks and feels differently than he does in certain situations. He has a much better grasp of it than he did when he was younger, and I think this will continue to improve as he continues to mature and has more life experiences.

How can you help your autistic child learn perspective taking?

The good news is that perspective taking can be taught. It will take time and repetition through many conversations and perspective taking exercises, but your child or teen can improve their perspective taking skills. Here are four ways you can educate your autistic child or teen about perspective taking.

1. Teach your child how to read facial expressions

Reading facial expressions and body language of other people is essential to understanding how someone feels. There are many tools and apps to help you teach them. Your child’s speech therapist may use worksheets and other items to help your child learn about facial expressions.

Here are some resources to help:

Dealing in Feelings Flashcards (affiliate link)

Faces: A resource for helping children understand emotions (affiliate link)

2. Ask your child questions about how they feel in certain situations and why

Part of learning how to understand others is to understand ourselves better. When a situation arises that causes emotion in your child (and it’s not a meltdown or something that causes a strong emotion in which you need to help your child calm down), ask them what they are feeling and why they feel that way. This brings awareness to thoughts and feelings your child or teen is experiencing. It makes them think about the why behind what they think and feel.

3. Help your child think about what others may feel like in different situations

After you talk about your child’s emotions and reactions to situations, take the opportunity to then talk about how others may feel about that same situation. For example, if you saw a mother and boy arguing in the store, when you go to your car, talk about it. Ask your child how they felt about the situation. Then talk about it from the mother’s point of view and the boy’s perspective. If your child disagreed with their teacher about a situation at school, talk about what your child thought and felt about it. Then evaluate the situation from their teacher’s point of view. You can discuss all types of situations – positive and negative – and how others could think and feel about them.

4. Play games and work through perspective taking exercises

Games and perspective taking exercises are a great way to help your child learn about how others think and feel in situations. One of the behavior therapists our son J worked with in the past had him and his brother play a game in which they answered a list of questions that were designed to show they had different perspectives on the same situations. It was a helpful exercise and really helped them understand each other better.

For some game or exercise ideas, check out this list from And Next Comes L.

Have you taught your autistic and ADHD child or teen about perspective taking? What tips do you have to offer? Leave a comment so that we can share and encourage each other on this journey!

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What is stimming?

Stimming is self-stimulating behaviors, which are often repetitive in nature and can be movements or even sounds.

Repetitive motor behaviors are part of typical development in a person. When infants and toddlers are developing, it’s normal for them to repeatedly kick their legs, flap their hands in excitement and rock while they are playing. It helps their brains figure out how their bodies work and develop coordination.

Almost everyone stims to some degree. However, when a neurotypical person stims, it is usually for short periods of time. They also are more aware if their stimming behavior is bothering others and will stop if it’s disruptive.

Types of stimming

Stimming can come in different forms. Generally, they are auditory, visual, tactile, vestibular, olfactory (smell) and taste stims.

Auditory (sound) examples include:

• Repetitive speech
• Humming
• Snapping fingers
• Tapping of ears or objects

Examples of visual stimming include:

• Staring at a particular object
• Lining up objects
• Blinking repeatedly
• Turning a light off and on
• Hand flapping

Some tactile stims can include:

• Tapping fingers
• Opening and closing hands
• Rubbing hands or an object
• Chewing on a shirt

Vestibular (perception of body position and movement) stims may be:

• Twirling
• Rocking back and forth
• Rolling
• Bouncing or jumping

Olfactory (smell) and taste stims could include:

• Smelling objects
• Licking hands or objects
• Tasting unusual objects

My son J has exhibited many of these stims throughout his life at different times: smelling objects, tasting, rolling, cracking knuckles and other joints, bouncing and staring at objects. I find that some have stayed consistent, but others change over time.

Why do autistic people stim?

So why is stimming so common for autistic people, and why is it different from neurotypical individuals? How does stimming affect your autistic child?

Stimming is a known trait in people with autism. Usually, this type of behavior is a coping mechanism for autistics. You may not know the reasons why your autistic child is stimming, but common ones include:

• Adapt to sensory overwhelm or the need for more stimulation
• Reduce anxiety
• Calm themselves when they are upset
• Acclimate to a change or new environment
• Express frustration or anger
• Avoid an activity they don’t want to do
• Ease physical discomfort

For many autistic people, stimming is an everyday activity and can last for hours.

How can I help my autistic child control their stims?

Stimming usually isn’t something to worry about in your autistic child, unless it starts to interfere with their learning, cause social problems or becomes harmful or destructive.

If you find your child’s stim is causing one or more of the negative consequences listed above, then it’s best to try to limit or eliminate it. You can work with your child’s behavior therapist to come up with a plan to reduce a certain stim.

Some steps to try can include:

• Determine the trigger for the stimming behavior and try to eliminate or reduce it for your child (this is probably the most effective way)
• Try to stick to your child’s routine
• Look for an alternative activity for your child such as squeezing a stress ball or using a fidget toy
• Encourage acceptable behaviors
• Help your child look for ways to use self-control of the stim or other ways to self-regulate
• Urge your child to exercise (it can produce endorphins that can be similar to what they are receiving from the stim)
• Use the stim as a reward for completing a challenging task or activity

Should you encourage or discourage stimming?

Overall, stimming serves an important function for your autistic child. As long as it is not harmful and not causing problems socially or inhibiting learning at school or home, you don’t need to do anything. You don’t necessarily need to encourage it because your child will do it anyway for the reasons mentioned above. However, discouraging a stim if it has no negative consequences can cause your child distress unnecessarily. Some experts even advise stimming with your child as part of their treatment.

What has been your experience with stimming in your autistic child? Leave a comment so that we can encourage and share with each other along this journey.

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What is alexithymia?

The Merriam-Webster Dictionary defines alexithymia as the “inability to identify and express or describe one’s feelings. People with alexithymia typically display a lack of imaginative thought, have difficulty distinguishing between emotions and bodily sensations, and engage in logical externally oriented thought.”

In other words, a person with alexithymia may not understand their own or other’s feelings and have a hard time distinguishing the difference between a feeling and bodily sensation. For instance, if a person with alexithymia has “butterflies in their stomach,” they may not recognize that as anxiety, nervousness or even fear. They may just think they have hunger pangs or that something else is happening in their stomach.

Prevalence of alexithymia among autistics

Alexithymia is not considered a core trait of autism, however, prevalence within autistics is higher than the general population. Studies estimate that up to 50 percent of people with autism have varying degrees of alexithymia. Other research indicates it could be as high as 85 percent of autistics also have alexithymia. That means not all autistics have alexithymia, and people who do not have autism also may have alexithymia.

Characteristics of alexithymia

So what are the characteristics of alexithymia and how do you know if your child may also have it? To be sure, you will need to talk to your child’s therapist or psychiatrist and request an assessment.

Characteristics of alexithymia include:

• Difficulty with identifying, describing and processing one’s own feelings
• Lack understanding of others’ feelings
• Hard to distinguish feelings from bodily sensations during emotional provocation
• Inability to detect changes inside their bodies, called interoception (a person’s internal state). For example, they may not realize their heart is racing or that they have a full bladder.

Does this mean people with alexithymia don’t experience emotions or understand they are experiencing emotions? No, they just have a difficult time naming it. For instance, a child with alexithymia could be depressed but not be able to differentiate it from other negative emotions.

In addition, people with alexithymia struggle to understand others’ facial expressions and body language to interpret what others may be feeling. They may see someone is angry and know it’s a negative emotion. Yet, it still may be difficult for them to identify exactly which emotion: is it anger, frustration, disappointment or something else?

What causes alexithymia? Experts haven’t found the exact cause, but studies point to it being genetic and also sometimes associated with trauma or neglect from when a person was young.

Empathy and alexithymia

How does alexithymia affect a person’s empathy?

According to this Psychology Today article, empathy is “the ability to recognize, understand, and share the thoughts and feelings of another person, animal, or fictional character. Developing empathy is crucial for establishing relationships and behaving compassionately. It involves experiencing another person’s point of view, rather than just one’s own, and enables prosocial or helping behaviors that come from within, rather than being forced.”

Having empathy is challenging for those with alexithymia because they have a hard time relating to someone else’s feelings as well as identifying their own. Does this mean they don’t care about others? No, they do but struggle with understanding the emotions and how to help another feel better – or even how to decrease the distress they are experiencing themselves. This makes it difficult for them to respond empathetically to others’ emotions and situations.

Treatment for alexithymia

Currently, the best treatment available for alexithymia is cognitive behavioral therapy, group therapy or talk therapy.

If you think your autistic/ADHD child may also be struggling with alexithymia, then talk to your child’s doctor about a referral to a psychologist or psychiatrist for evaluation. If your child is diagnosed with alexithymia, then you can integrate treatment into any current behavioral therapy (if your child is already working with a therapist) or find a therapist who can help your child.

Looking to find out more about alexithymia? Here are some books that might help.

Emotionally Dumb: An Overview of Alexithymia (affiliate link)

Alexithymia, A World without Emotions (affiliate link)

Alexithymic Parenting: The Impacts on Children (affiliate link)

Does your autistic/ADHD child also struggle with alexithymia? What has your experience been with getting help and support for your child? Leave a comment so that we can share and learn from one another on this journey.

References:

Poquerussse J., Pastore L, Dellantanio S. and Esposito G. Alexithymia and Autism Spectrum Disorder: A Complex Relationship. Frontiers in Psychology. 2018. 9:1196.

Scheerer, N., Boucher, T. and Iarocci, G. Alexithymia is related to poor social competence in autistic and non-autistic children. Autism Research. 2021. 14:1252-1259.

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What is self-regulation?

The Merriam-Webster Medical Dictionary defines self-regulation as “the act or condition or an instance of regulating oneself or itself” or “the bringing of oneself or itself into a state of order, method, or uniformity.”

Self-regulation is an executive function skill. What is executive function? The Merriam-Webster Dictionary defines it as “the group of complex mental processes and cognitive abilities (such as working memory, impulse inhibition, and reasoning) that control the skills (such as organizing tasks, remembering details, managing time, and solving problems) required for goal-directed behavior.”

In other words, these are necessary skills for being successful in school, work and “adulting” in the future. If our kids are struggling with these skills, it’s so important that we as parents, caregivers and teachers work with them to improve their executive function capabilities.

Self-regulation falls into three categories:

• Sensory regulation – This entails a person being able to sustain a sense of arousal to respond to sensory input or be able to control their reactions when they receive too much sensory stimulation.
• Emotional regulation – This is the ability to control our emotions to appropriately react to social cues and rules.
• Cognitive regulation – This enables a person to use the appropriate mental processes to solve a problem, complete a task, learn and pay attention.

Self-regulation is definitely an area that our son J has struggled with over the years. Thankfully, as he has matured into a teenager, he is improving. We still have days when his emotions get our of hand, and distractions (especially when doing schoolwork or homework) are an ongoing struggle. I still continually need to work with him on learning how to self-regulate, but I know it’s one of the most important things I can teach him.

Why is self-regulation so important?

It is incredibly important that we teach our autistic and ADHD children self-regulation so that they can be better accepted by their peers and be able to one day have the social skills to hold a job and fit into their community.

What happens if someone isn’t able to self-regulate? They tend to react to situations with inappropriate emotions, experience more negative emotions for longer times, have a short temper, and suffer from mood swings. They also will have a hard time completing tasks, problem solving and paying attention. These could lead to negative consequences in their lives.

How can you teach self-regulation to your autistic and ADHD child?

Are there ways you can teach self-regulation to your autistic and ADHD child? Luckily, there are many. Here are 14 that you can try with your child.

1. Use an emotions chart

If your child has been working with a therapist (cognitive, speech, ABA or others), they probably have been exposed to an emotions chart (affiliate link). It is a helpful tool to help them identify their and other people’s emotions.

2. Discuss appropriate emotions for different situations

Children who do not self-regulate will have inappropriate emotions for situations. It is important that you discuss what is the appropriate range of emotions for different situations or scenarios. For example, what is acceptable if they are playing ball with a sibling or friend, and the child will not throw the ball to them? It’s okay to be frustrated, a little mad, disappointed or even sad. It would be inappropriate to go into a rage, screaming and yelling at the other child.

3. Help your child assign emotional levels for scenarios

Along the lines of appropriate emotions for situations, it is also helpful to talk to your child about the level of emotions for different scenarios. A certain emotion may be appropriate for a situation, but at only a certain level.

4. Assist your child with identifying their sensory triggers

Most children with autism and ADHD struggle with sensory issues. Help them understand their sensory triggers so that they can deal with them before the issue becomes too much for them.

5. Teach your child coping strategies for emotional and sensory triggers

If your child is dealing with a strong emotion or being triggered by sensory input, teach them coping strategies. Those could include deep breathing; walking away; putting on sunglasses if bright lights are bothering them; talking to a parent or teacher; asking for help; or learning to compromise.

6. Increase your child’s self-awareness

Self-awareness is a big step toward self-regulation. We need to be aware of our emotions and triggers for them before we can learn to take control. Talk to your child about what is going on their life and ask about how the feel and think about situations.

7. Help your child improve their communications skills

One of the best things you can do is help your child improve their communications skills. Many times, strong emotions happen because the child doesn’t know how to express themselves with words or other forms of communications. Helping them communicate better will assist them with self-regulation.

8. Use social stories

Using social stories can be a wonderful way of teaching your child about emotions, how to problem solve and more. A couple of great resources to help include:

“The New Social Story Book, Revised and Expanded 15th Anniversary Edition: Over 150 Social Stories that Teach Everyday Social Skills to Children and Adults with Autism and their Peers” by Carol Gray (affiliate link)

SkillEase Story Cues Skilled Sequence Cards an Educational Therapy Game for Storytelling, Social Skills and Critical Thinking Skills for Home Fun and Education, Tele Therapy, or Teaching (affiliate link)

9. Show empathy

Showing empathy for your child and how they feel is really important. Let them know that everyone feels angry, upset and sad at times. Once they are calmed down, you can talk about the situation and discuss the appropriate emotion and level so they can learn from the experience.

10. Model appropriate behaviors yourself

We know that children often imitate the adults around them. Therefore, if we expect our kids to learn self-regulation, we need to show them by modeling it ourselves. Then, when we mess up, we need to be willing to admit it and talk to our children about it so they can learn with us.

11. Teach calming techniques

When our children have high emotions and sensory overwhelm, it’s important they learn how to calm themselves down. Teaching our children calming techniques such as counting to 10, breathing deeply or walking away is essential for them to learn self-regulate.

12. Provide a safe place for cooling down

It’s important to have a safe place – both at home and at school – for your child to go and cool down when they are overly emotional or overwhelmed. This can help them get control of themselves and be able to rejoin activities. My son J would go to the special education director’s office at school to cool down. Many times, she would read him a story to help him get control of his emotions.

13. Role play and practice

To help teach your child appropriate emotions and reactions, role play different situations with them. This allows them to practice different scenarios before they encounter them.

14. Try to keep your child’s schedule as consistent as possible

Routines are incredibly important to people with autism and/or ADHD. To help your child better self-regulate, try to keep their schedule as consistent as you can – especially meal and bedtimes.

Do you have any helpful tips to teach self-regulation to an autistic and ADHD child? If so, share them in the comments below so that we can support one another on this journey!

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What is executive function?

First, what is executive function? The Merriam-Webster Dictionary defines it as “the group of complex mental processes and cognitive abilities (such as working memory, impulse inhibition, and reasoning) that control the skills (such as organizing tasks, remembering details, managing time, and solving problems) required for goal-directed behavior.”

In other words, these are necessary skills for being successful in school, work and “adulting” in the future. It’s so important that we as parents, caregivers and teachers work with them to improve their executive function capabilities.

What are the primary aspects of executive function?

Executive function has several primary aspects. Those include:

• Planning – Skill needed to think of a project or task that needs to be done and then break it into smaller steps to complete the project/task by a deadline.
• Working Memory – Ability to remember short-term thoughts and information needed to complete a task or function.
• Problem Solving – A key capability needed to identify a problem and solutions to solve it.
• Reasoning – Ability to comprehend, analyze and think critically about problems or concepts. Then it’s important to be able to relay them verbally to others.
• Attention – Skill that allows a person to focus on the task at hand and recall information from working memory to be able to complete it.
• Initiation – Ability to self-start an activity, task or project.
• Inhibition – The ability to tune out distractions or thoughts that get in the way of completing a task. This is basically impulse control.
• Cognitive flexibility – Skill that allows someone to “go with flow” or adjust their plans or thinking when needed.

Why do people with autism and ADHD lack executive functioning skills?

Research conducted in both autism and ADHD revealed a lack of executive function skills in both people with autism and/or ADHD. Researchers have theorized that this is result of the genetic make-up of people with have autism and/or ADHD.

Generally, people with autism and ADHD lack skills related to impulse control, planning, flexibility, working memory, monitoring, inhibition, concept formation and others related to executive function.

I know our son J has struggled with executive function since he was young. Because we have worked with him, he is getting better, especially with planning, working memory, initiation and organizing. He still really struggles with problem solving, flexibility, inhibition and attention. Improving his executive function is a big focus for him since he is a teenager and needs these skills to become more independent.

Why is executive function so important?

Executive function is hugely important for success in school, work and “adulting” in general. It is critical to help them function normally in life. Developing these executive skills for our children with autism and ADHD is key to them living successful lives – not only now through school accomplishments but also in the future for their careers and ability to live independently.

(Download this free Life Vision Workbook to help you dream today to enable your child’s success in the future. Add your plans for helping your child develop executive function skills to those capabilities they need to develop. Then provide an action plan to help them.)

How can you help your child or teenager improve executive function?

So. what can you do to help your child or teenager with autism and ADHD improve their executive function? First, I recommend two books that can really help parents with practical plans and advice.

“Smart but Scattered: The Revolutionary “Executive Skills” Approach to Helping Kids Reach Their Potential” by Drs. Peg Dawson and Richard Guare (affiliate link)

“Smart but Scattered Teens: The “Executive Skills” Program for Helping Teens Reach Their Potential” by Drs. Peg Dawson and Richard Guare (affiliate link)

Along with reading those books, here are 12 ways you can help your child with autism and ADHD develop executive functions skills:

1. Teach your child to use a planner for school and other activities to keep track of their homework assignments, projects, extracurricular activities and due dates. This is a big one and truly will be used throughout their life.
2. Request preferred classroom seating in your child’s individualized education plan (IEP). Having preferential seating near the front of the classroom or wherever is the best location for your child can really help with attention, inhibition and more.
3. Use assignment sheets to track homework and submission. This has been very effective with our son J in high school, and it helps his resource teacher be able to quickly check that he has completed everything.
4. Repeat instructions. Our kids with autism and ADHD many times need to hear instructions repeated more than once. (I know this takes patience as parents to do this one!)
5. Help your child break down projects into smaller tasks so they can learn how to better plan and organize projects so they will be completed on time.
6. Use visual schedules to visually show steps of a task or routine. We used to have one for J’s morning routine and for other tasks like taking a bath. They were really helpful for him learning the steps needed and improving his working memory.
7. Find apps that your child will use for organizing. It may be to-do apps, reminders or calendars. Whatever will work for your child or teenager to help them with planning, organizing and other skills.
8. Provide checklists to help remind your child of tasks that need to be completed or steps of a project. We used to have an after-school checklist for J, and he still uses a weekly chore checklist to remind him what to do each day.
9. Build in break and margin times into their daily schedule. Lack of executive skills and inattention to time are a real struggle for those with ADHD. Be sure to build in breaks and margin into your child’s day so that you don’t feel like you are running from one thing to another.
10. Post reminders where your child will see them. This may be on a wall or bulletin board in their room, on the bathroom mirror, notes on the table, etc.
11. Teach your child backwards planning. Help your child learn how to start with the end in mind for a project, break down the tasks/actions needed and put them on a calendar so that everything is completed on time.
12. Create an organizational system for their room by labeling shelves/baskets and even post a photo of what a clean room looks like and where everything goes. This can work too for a “launch” area to keep all their school and other items needed daily for activities.

Does your child with autism and ADHD struggle with executive function? What have you found that works for your child? Leave a comment below to share and support one another!

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Our son J thrives with routine. When he was younger, keeping as close to his routine as we could (even while travelling) was the key to better days. He is better at adapting when his routine changes now that he is a teenager. He even creates his own routines because he is more in charge of how he spends his days. Of course, he has requirements such as school, meals, showers, chores and other necessary tasks. He works in his time for his special interest, which happens to be video games at the moment.

Routines are a bedrock for people with autism. Why? Here are 14 reasons.

1. Promote predictability

Our world can feel chaotic and unstable. Routines provide our children with autism and ADHD the predictability they crave in life. Each day is easier to face when we know what our daily schedule will bring. 

2. Feeds the need for repetition

Children with autism need repetition. Many tend to say phrases or words over and over again, or they repeat an action. Having a routine can feed this need for repetition in their lives.

3. Helps them deal with depression and/or anxiety

Many of our kids also may be dealing with depression or anxiety. Routines can provide some stability and help reduce both of these feelings.

4. Provides a sense of well-being and stability

A routine can help our children feel well and stable. They feel more stable when they have routines and know what is coming next in their day.

5. Gives them a sense of order

Our kids with autism crave order in their lives. (Okay, I’m not on the spectrum, but I admit that I like some order in my life too, so I can relate!) In a world that can be unpredictable and chaotic, having a sense of order can help our kids better handle the challenging situations they encounter.

6. Relieves stress

Both autism and ADHD present a lot of challenges for our children and teenagers and having routines can help relieve stress. If your child has stress relief, then that also helps your whole family too. I know as a parent that when our son J is not dealing with a lot of stress, then it is more peaceful in our home. I too have a greater sense of calm.

7. Comes naturally to them

Children with autism naturally lean toward and embrace routine. It feels normal to them.

8. Makes things easier to learn

When a child is under less stress and feels stable, they are better able to learn new things and retain that knowledge. Routines make it easier for a child to work on improving a behavior or learning a new task or social skill.

9. Helps them through change and transition

We all know that it’s hard to go through changes and transitions. It’s especially difficult for our children with autism and ADHD. Routines help our children feel more settled, so they can better handle changes or transitions from one activity to another. They also can manage through bigger changes if their routines are in place.

10. Reduces power struggles

The consistency of routine can help reduce power struggles between you and your child.

11. Improves cooperation

Routines can improve your child’s cooperation when you ask them to do something. 

12. Creates a stronger parent-child relationship

With less stress and more stability, routines can help you develop a stronger relationship with your child.

13. Thrive in environment of structure

Routines provide structure for your child’s day. People with autism tend to function better within a strong structure, and it allows them to learn and thrive in their lives.

14. Fosters security

A routine provides security for your child. They feel safer within the boundaries of their routines because they know what is next in their day.

Helping your child be flexible when needed

While there are many benefits and reasons why routines are important to your child with autism and ADHD, it’s also important that they can be flexible at times when they need to change.

Communication is the key to informing your child in plenty of time that their routine has to change and why. It could be a short-term or even a one-time change due to a special activity or visit from family or friends. Or it could be a longer term change such as a move to a new home or even a new city. Whatever the reason for the change, let your child know ahead of time.

Two good tools for helping with this communication are visual schedules and Social Stories™. Visual schedules can assist in letting your child know what changes will happen in their day and what activity will be displace their normal routine. Social Stories can be helpful in explaining why. It may be a fun reason like a visit to the park with family friends that changes their lunch and early afternoon routine. It could be going to see a play at the theatre that causes their bedtime routine to start later. The new activity could be a doctor’s appointment that displaces part of their day’s normal activities. Whatever the change, advanced notice of the change will help them adapt easier.

What are the reasons routine is so important for your child with autism and ADHD? How have you helped them when their routine has to change? Leave a comment below, so we can encourage and support one another on this journey!

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