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Hypotonia in Kids on the Autism Spectrum

“My 10 year-old child with high-functioning autism is very smart, but he is very, very poorly coordinated. He has difficulty riding his bike, bowling, catching, hitting a tennis ball, kicking, shooting a basketball, diving in a pool, swinging a bat, and throwing. He can't run fast without tripping, and he has terrible posture. As an infant, he was a later walker (almost 17 months). He was a very sloppy eater, and still has trouble cutting with a knife or the edge of his fork. Also, he had some speech articulation issues. We were hoping he would grow out of all this, but he hasn't. I wonder if there is anything we could do to help him be less awkward. Does what I've described sound "normal" for some children with autism? Or does it sound concerning? How physically uncoordinated should he be before we try to get professional help for him?”


Many children with High-Functioning Autism (HFA) have a comorbid condition called Hypotonia, which is sometimes referred to as "floppiness." This is because the muscles are meant to help support the skeletal system and are designed to prevent certain kinds of motion. Because the muscles are not especially tight, children with Hypotonia frequently experience "hypermobility" (i.e., the ability to move limbs into awkward positions). They often find that they're able to very easily carry out feats that require flexibility, but not strength or balance (e.g., splits, back-bending, shoulder rotation, etc.). Also, they may display uncommon flexibility in other joints (e.g., fingers).



This kind of flexibility comes with a price. HFA children are generally very uncoordinated and awkward. In running, this plays a role in the so-called "unusual gait." A myth is that muscle tone just impacts the large muscles, but this is not the case. Muscle tone impacts all activities requiring muscles (e.g., speech, pencil grip, writing, etc.).

Hypermobile joints are less stable than usual, which means that the HFA youngster needs stronger muscles to support the body. The increased compliance (i.e., give) in the connective tissue also affects the blood vessels and internal organs, which can lead to constipation, trouble with bladder control and voiding, and low blood pressure.

Hypermobility affects the development of motor control in many ways. Since the joints are naturally less stable, more muscle strength is needed for proper posture and movement control. Young people with hypermobility have difficulty climbing, gripping a pencil for drawing and handwriting, hanging from monkey bars, managing stairs, running, sitting erect while working at a table, and walking long distances. Also, these kids often have tight muscles in the hips and shoulders, which affects shoulder movements needed for drawing and handwriting, as well as sitting comfortably on a chair or cross-legged on the floor.

==> Parenting Children and Teens with High-Functioning Autism

Due to tightness in the hip muscles, the affected child will often experience pain in the legs following exercise, or when he or she is going through a growth spurt. The youngster often has an increased tendency to respond negatively to discomfort, which can make night pain related to exercise very troublesome. In addition, toe walking is often seen in these children, which is associated with tightness in the calf muscles and the muscles crossing over the back and sides of the hips and legs. In most cases, children who walk on the toes have hypermobile joints. 

Fine motor skills are hard to learn if you have autism. These fine skills are essential for drawing or coloring, grasping objects, riding a bike without training wheels, zipping-up jeans, and tying shoelaces. However, when muscle tone is low, these skills are much harder to perform properly.

When an HFA child isn't proficient at something (e.g., riding a bike), but all his friends can do it, this deficiency can create a sense of isolation in the child. Imagine watching all the other kids in your neighborhood doing various activities very easily while you don’t appear to have the same abilities. Consequently, HFA children can start thinking they're “dumb.” This is definitely not the case. Intelligence has nothing to do with it!

HFA children often slump a great deal when seated or standing for long stretches. Occasionally, they'll stand with their legs crossed in what seems to be an uncomfortable manner. Even though this appears painful, this is really an extremely comfortable position for these kids. Additionally, they frequently sit with their head and shoulders rolled forward, and will often lean on walls, furniture, door frames and desks. Moms and dads of kids on the autism spectrum will probably be very familiar with being "leaned on."

Hypotonia doesn't prevent HFA kids from enjoying themselves, however. They are able to run and have fun with other kids without feeling any harmful effects. The issue is that they are a little slower and tire easier. Consequently, team sports (e.g., soccer, basketball, football) are often not suitable to these children.

While the slumping and leaning habits are not necessarily good posture, they are not particularly harmful to the child, unless of course the position is adopted for very long intervals without proper breaks.

Usually, kids are believed to have Hypotonia because they have poor postural stability and poor performance on movement tasks. The presumption is made that these issues result from Hypotonia, but this isn't always the case. HFA children may have problems with understanding movement skills and obtaining basic strength needed for action for a combination of reasons (e.g., joint hypermobility, a fearful temperament, difficulty with the thinking skills needed for learning, difficulty predicting what happens next, the inability to learn from watching other people and from their own experience, etc.). Thus, the real issue is not what you can do for an HFA child with Hypotonia, but instead what you can do to improve overall performance on age-appropriate movement tasks. This depends on the underlying reasons for the child’s problems, which may or may not have anything to do with Hypotonia.

Children with HFA (ASD level 1) can have a comprehensive assessment by a physiotherapist and/or occupational therapist to determine the nature and degree of the problem. Listed below are a few of the areas where motor clumsiness is evident, and some ways of improve specific skills:

1. Rapid Movements— Research has noted that, while engaged in activities that require motor coordination (e.g., cutting out shapes with a pair of scissors), a significant percentage of kids with HFA were known to hurry through the task. They seemed to be impulsive, unable to take a slow and calculated approach. With such haste, errors occur. This is often infuriating for the child and the teacher. The child may require guidance and reassurance to work at a suitable pace, having time to correct mistakes. Occasionally the youngster can be asked to slow down by having to count between actions and using a metronome to indicate a suitable pace.

2. Manual Dexterity— This area of movement skills involves the ability to use both of your hands (e.g., learning to dress, tie shoelaces, eat with utensils, etc.). This may also extend to the coordination of feet and legs (e.g., learning to ride a bike). If the HFA child has problems with manual dexterity, a good technique to help is "hands on hands" training (i.e., a parent or teacher physically patterns the child's hands or limbs through the required movements, gradually fading out physical support).

3. Locomotion— When the HFA child walks or runs, the movements may seem awkward or "puppet" like, and many of these kids walk with no associated arm swing. There may be deficiencies in upper and lower limb control. This particular feature can be very noticeable, and other kids may mock the autistic child, resulting in his or her desire not to take part in running sports and physical education in school.

==> Parenting Children and Teens with High-Functioning Autism

A physiotherapist or occupational therapist can develop a remedial plan to ensure the child’s movements are coordinated. Therapy can include the use of a large wall mirror, video recording, modeling, and imitating more "fluid" movements using music and dance. An intriguing fact is that the ability to swim seems least affected, and this exercise can be encouraged to allow HFA kids to experience genuine proficiency with movement.

4. Handwriting— A teacher may invest a lot of time interpreting and correcting the HFA youngster’s illegible “chicken scratches.” The child may also be aware of the poor quality of his handwriting and may be hesitant to take part in activities which involve extensive writing. Unfortunately, high school instructors and potential employers consider the neatness of handwriting a way of measuring intelligence and character. As a result, the young person on the spectrum may get embarrassed or upset at their own inability to write neatly and consistently. The child may need an assessment by an occupational therapist and remedial exercises, but today's technology can help reduce this issue.

Kids on the autism spectrum are often very competent at using computers and keyboards, and they may prefer typing over writing homework and exams. In this case, the presentation of their work is then similar to the other kids. A parent or teacher could also act as the youngster’s scribe to guarantee the legibility of her written answers or homework. The ability to write longhand may become a lot less important in the future.

5. Basic Skills— Catching and throwing precision seems to be especially affected in HFA children. When catching a ball with two hands, the arm movements of the child are often badly coordinated and affected by problems with timing (e.g., the hands close in the correct position, but a fraction of a second too late). One study noted that children on the spectrum would frequently not look in the direction of the target prior to throwing. Clinical observation additionally indicates that they have poor coordination in their ability to kick a ball.

One consequence of not being proficient at ball games is the exclusion of the HFA child from some of the most well-liked games on the playground (i.e., kick ball). These “special needs” children may avoid such games simply because they understand they lack proficiency, or are intentionally excluded since they're a liability to the team. As a result, they're much less able to improve ball skills with practice. From an early age, mothers and fathers should help their child practice ball skills in order to guarantee that he has fundamental proficiency to be included in the games. The child can be enrolled in a junior soccer or basketball team to enhance coordination and to learn to play specific games. It's also vital that you have your child’s eyesight examined to determine whether wearing glasses enhances hand-eye coordination.

6. Balance— In HFA children, there can be an issue with balance, as tested by analyzing the ability to stand on one leg with eyes closed. A number of autistic youngsters are not able to balance when placing one foot in front of the other (i.e., tandem walking, which is the task of walking a straight line as though it were a tightrope). This may affect the child's ability to use some playground equipment and activities in the gym. The child may need practice and encouragement with activities that require balancing.




Here are some exercises for babies and younger children with Hypotonia to develop fine motor skills:
  • Use deep pressure massage on the hands and feet, focusing on the pad of the big toe and each of the fingertips.
  • Talk to your child often. Tell him what you're doing, especially when bathing, grooming, dressing or changing him. Verbally repeat each step in the process often. Play mimic games with your child, repeating the sounds he will naturally make. Encourage him to make sounds by making faces, singing, and talking nonsense syllables.
  • Rub the hands and feet together, first left hand to left foot, then right hand to right food, then across the body.
  • Resist any thrust of your child's legs while you're holding her, and hold her often in a standing position while supporting her well in the torso. 
  • Play patty cake and patty foot to bring hands and feet into the center of the body.
  • Place toys or objects at the midline of the body and encourage drawing the limbs in to pick these objects up successfully.
  • Use small beanbags for weights and movement training.
  • Place child-safe mirrors on crib walls or down near the floor where your child can see himself often. This helps increase his self-image and self-reflection.
  • Make a safe place for your child in every room of your house, and bring her along as you go about your normal routine. The frequent changes in environment and constant contact with you will help stimulate your child's mind and awareness.
  • Lightly brush from the heel to the toe on each foot and from the base up to the fingertips on each hand with light massage strokes or a soft 1-inch paintbrush.
  • Hold bright or desirable small objects out, encourage reaching for it and praise any attempt or success to do so.
  • Help your youngster to do occasional rounds of heel walking, where all of her weight is balanced on her heel and her toes stick in the air.
  • Give your baby a lot of smiles, hugs and cuddles. This both increases emotional bonding and stimulates his senses.
  • Use a backpack with books or toys in it for weight training.
  • Expose your child to as many different pleasant stimuli as you can think of (e.g., mobiles, wind chimes, patterned cloth for crib sheets and bumpers, musical or noise toys in bright primary colors, etc.). Primary colors are bright red, blue and yellow. Babies see high-contrast things the best, and love these colors. An effective tactic that some parents have used is to cut out suitable pictures from magazines and placing on the baby's walls, which allows the frequent change-out of pictures needed to give stimulation without breaking the bank.
  • Draw feet up to the baby's mouth, circling the mouth with each big toe. Repeat with hands and fingertips in order to increase awareness of extremities and oral motor control.
  • Create tape recordings of your child's own sounds, the sounds of your family, and appropriate music. Play these tapes often, and dance your child around rhythmically in your arms during music or sounds. This helps her to become aware of her own body.

 ==> Parenting Children and Teens with High-Functioning Autism

Treatment—

Speech and language therapy: A speech and language therapist can assess your HFA youngster’s feeding and swallowing, and help identify swallowing problems that can sometimes be associated with Hypotonia. The therapist will also be able to make recommendations about feeding support.

Occupational therapy: Occupational therapy teaches the child the skills needed to carry out day-to-day activities (e.g., the therapist may focus on improving your child’s hand and finger skills needed for dressing and feeding). Your child will also be taught exercises and tasks she can perform on a daily basis. Equipment to help her move around more easily may also be recommended (e.g., ankle or foot supports if the child’s ankles or feet are affected by Hypotonia).

Physiotherapy: A physiotherapist will assess your youngster’s muscle tone and ask him to carry out a series of exercises and tasks. In treating Hypotonia, the main objectives of physiotherapy are to strengthen the muscles around the joints of the arms and legs so they provide more support and stability, and to improve posture and co-ordination to compensate for low-muscle tone. The therapist will design a program that includes a range of exercises for your youngster to do on a daily basis. Therapy will be integrated into your youngster’s daily routine and everyday activities, both at school and at home.
COMMENTS:

 •    Anonymous said…   Lots of kids with ASD have movement issues due to the lack of priopercepitation, the input from the environment to their bodies. Spatial awareness is often affected. Anytime you have an issue with sensory processing you will issues with the "body in space" concept. Lots of kids seem to have hypotonia but actually have a lack of sensory input from their body. Hypotonia can be comorbid. So can Dyspraxia (dyspraxia is on the Developmental Coordinator Disorder Spectrum), but Dyspraxia is literally the abscence of any other explainable reason for movement oddities, so most kids will only get that DX at an older age.
•    Anonymous said…   My son 9 is exactly the same he can't dress himself, ride a bike, swim do his own shoes etc even though we practice every night.
•    Anonymous said…  It's unfortunately normal. My 13 yr old son has HFA and still can't tie his shoes, prefers to eat with his hands (even with this he still uses what I call a "mitten hand" grasp), and just cannot play team sports. Being in middle school and having these difficulties is devastating, particularly because he is very intelligent and in all advanced classes. We are fortunate enough to have two boys right in our neighborhood who have accepted his quirks and give him a ton of leniency when they try to play kickball, but if anyone else joins he usually just quits rather than be embarrassed. He's always been a toe walker and routinely complains of pain in his hips too. I hate it but there isn't really anything I can do that I haven't already done...
•    Anonymous said…  Kids on the spectrum tend to have difficulties with bilateral coordination. The OT I spoke with about my daughter said she suspected its due to the limited communication between the two hemispheres in the brain.
•    Anonymous said…  My 19 year old struggles to spread peanut butter with a knife. He does his best, but it's a mess. Sometimes to anoint of frustration for him. We keep supporting him to be independent...meaning we clean up the counter often!!
•    Anonymous said…  My 27 month old daughter just started crawling (after lots of PT). Her hypotonia was diagnosed when she was 13 months old. Hypotonia can actually effect some parts of the body than other. She mostly has issues in her legs; her feeding and fine motor skills have not been affected whatsoever. There's a supportive Facebook group called Hypotonia Parents that has been useful.
•    Anonymous said…  My 9 year old daughter is HFA and just learned to tie shoes. She is also uncoordinated and seems to trip over her feet a lot. She did some OT and that helped her a lot.
•    Anonymous said…  My Aspie boy just finished 15 mo. of intense Occupational Therapy/Physical Therapy and Speech Therapy. He is showing some improvements in all areas. I've been told by both of his physical therapists that swimming and rock wall climbing next would continue to improve his balance, bilateral coordination and endurance. He's been given yoga ball activities for home maintenance.
•    Anonymous said…  My daughter is 10 and has the same issues. Sports, gymnastics, riding a bike, skating etc are all things she has no coordination to do. She can however swim. She is very clumsy, can't tie shoes or even a simple knot. Her vocabulary has always been extensive. And she is super smart. But exercise is simply not her thing...except for swimming. She does ride a bike now but just learned last year.
•    Anonymous said…  My son had some minimal improvements with OT and speech, but not a significant amount. These therapies aren't cure-alls... and I'm sure most of us have tried OT (for years). I'm hoping to hear other suggestions...
•    Anonymous said…  My son has asperbergers. Most of your issues fit however my son was an early Walker and taller with an extensive vocabulary. I had to pull him out of high school is junior year because of sensory issues. He's 22 and still can't ride a bike, tie his shoes or skip. He is in college this year with a 4.0 GPA. One thing to remember about these kids is that they don't fit into a box. They are all unique.
•    Anonymous said…  My son has had some of these delays. He still can't swim. He's finally riding a bike. I noticed that he was sort of like a wet noodle on his bike - very hunched over and all over the place and I kept talking to him about keeping his back straight. That concept seemed very foreign to him and I don't think it's something you typically have to tell kids. It made me wonder if something like horseback riding therapy would be or would have been helpful. I think balance and core strength could be a big issue. I haven't done it but I've heard wonderful things from other parents about it.
•    Anonymous said…  My son has this as well. He walked at 22 months and still struggles with sloppy eating, riding a bike, etc. He is almost 9
•    Anonymous said…  My son was advised to throw a tennis ball against the wall...this has really helped his coordination so much..
•    Anonymous said…  Occupational and Physical therapy can help address these issue. Please seek help as soon as you can. Sooner is better.
•    Anonymous said…  Occupational and physical therapy will help. Also, hitting a ball off a T, as in t-ball helped my son.
•    Anonymous said…  Read some stuff by sally Goddard. It helped me find a therapist that works on the mid line coordination as well as other things  :)
•    Anonymous said…  Team sports have been disastrous.
•    Anonymous said…  The definitions of disabilities changes more often than the public knows. There's actually a government handbook of these. Schools can provide speech, occupational therapy, and social skills class Three of my kids go to these. My daughter diagnosed with Aspergers is 11. She has none of those problems but my other two do. My son can't do buttons and lacks fine motor skills. I had always thought it was because he started video games at two and is obsessed with them. Other parents with gaming kids don't have that problem mostly. Speech helped a lot BC her teacher makes it fun n I didn't stop harassing school until they did it there too. All kids are different, that's why theirs a spectrum theory. Too many symptoms are available.
•    Anonymous said…  The Masgutova Method has saved my kid's life
•    Anonymous said…  We have spent the last year with frequent medical tests trying to find the reason why our 20 year old with HFA / Aspergers is having spine, joint issues... this describes her as a child exactly and now as an adult i am beginning to understand that the hypotonia has become a long term contributor to major issues she is now struggling with... we didn't get a clear diagnosis until a couple years ago!
*   Anonymous said... My 9 year old HFA/AS son still can’t manage a bike- even with training wheels. I just explained to him that everyone has different talents and there are a lot of children that are good at sports but they can’t recite all the presidents (including years of their presidency and how they died!) )like he does... Strengths and weaknesses are in each one of us. 

Post your comment below…
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COMMENTS & QUESTIONS [for March, 2017]

 Do you need some assistance in parenting your Aspergers or HFA child? Click here to use Mark Hutten, M.A. as your personal parent coach.

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Mark,

I find there a lack of supports where I live. Since he's been kicked out of school (behavior and substance use)and now having to attend the At Risk Youth Program for schooling, I am still concerned that my son is not getting what he really needs which is:
-Coping Skills
-Learning realistic thinking and emotional regulation skills
-Learning to take responsibility for his doings/ and show remorse.
-pro-social communication
-learning self control and how to control his impulses
-Problem solving
With being 6 months away from being 18 (considered an adult here in Manitoba Canada) he is no more near appropriate acting age which scares me. I worry that he has few anti social traits and will turn into that for adulthood.

What are your thoughts on Dialectical Behavior Therapy for ADHD and ODD?

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Mark,

I try, I'm all about structure since he was little after my schooling in child psychology.

Funny you say military, we are a military family... This is why I believe we struggle with patenting. My husband is very drill sargent authoritarian and I am authoritative... I've always been the parent to sit my kids down and discuss stuff, talk about what we did wrong, how we can make better choices and what kinds of ideas we can do next time we're in that situation.....

So far my week with him has been fabulous.
He managed to only disrespect my rules once of the drugs being done in my house, and actually did when his dad was home, which dad in return flushed down the toilet. My son proceeded to call him a effing dink. Normally my husband would have reacted hugely and done something, but instead he says he has followed through with ignoring the behavior.

I hope and pray I'm on the right track, not sure how much longer I can live in chaos.

Thanks for your words, advice and direction.

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I am emailing to see whether your program will work for me. In a nutshell, I have more behavior problems from my husband that is worse than both of my children put together. He has been diagnosed with ADHD in the past and i am constantly having to talk with him about his behavior and the destructiveness it causes in the household. Whenever I do try to engage him in a mature manner he gets worse. He deliberately does exactly what you ask him not to do and when I ask him to stop he makes rude noises, gestures, he twists it and it is always my fault. I feel so frustrated because I already have two children and there are many days that are completely and totally taken up with him and his behavior to the point my other two children get left out or subject to the best mustered up care I can give them under the circumstances. If i am working with one of my actual children, he will come along and undermine everything i am doing. I often feel robbed of a household other women take for granted. I do not have the luxury of having relaxing evenings at home, and anytime he does happen to be up in the mornings during the week, he creates chaos. I literally have to wait till he goes to work before i can get anything done around the house and find myself having to hide my attempts at running an effective household or he meddles and nothing i try to accomplish becomes a reality. He makes very little attempt to behave in an adult way, yet expects intimacy like an adult. I am at my wits end.

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Dear Mr. Hutten,
I must start by expressing my immense gratitude for all your work. Your articles, books, and videos have been a life saver and an impotence for me to try again to repair my marriage.
My husband and I have been married for almost 25 years. We have 8 children together. Our oldest is married and has his own baby. We have stayed committed to the relationship albeit a challenge from the very beginning.
The first fifteen years of my marriage were primarily dictated by my husband's (obsessive) studying. I was very supportive of his efforts, and  our families helped us out financially. I took on all of the family responsibilities. I single handily took care of the children, shopped for everything, payed  the bills ,and managed all our vacations and outings.
When we did spend time together there were always misunderstandings. He was very rigged in his thinking and I spent so many years negotiating  to get him to be flexible about almost everything. He is a loner personality. So convincing him to reach out for advise or help has been my biggest challenge.
I thought he suffered from ADD, OCD, and social anxiety.
The last 10 years have been a mini hell on earth. Our families wanted us to become financially independent. Naturally I took on that burden once again. My husband has never had a job. I was pregnant with my last child when I started to deteriorate emotionally. My husband was going through a depression. I think he was finally coming to terms with his limitations. He could no longer hide behind a book.
This was around 2008. Our investments were not producing and money was difficult for everyone. At that point I was living over seas. My extended  family had moved back to the US and I was left with a large family to care for by myself. Of course   my husband was by my side but more like a child than a partner. In addition he required that I treat him like a partner and with an unusual amount of respect. He was so insecure that everything I said was consistently misinterpreted.
When I would get angry or hurt, he would then retreat and I became the aggressor.
I started experiencing postpartum depression. I got on medication but it made me very tired. The family started falling apart and my mother insisted we come back to live near her in Florida.
It was traumatic to move an entire family. Many of my children did not read or write English. I had to find a job and I was coming with 3 children who were challenging. Two with ADHD and one who we finally got diagnosed (several month ago) with AS/HFA.We moved to Lakewood, NJ for the many resources available to families in our Orthodox Jewish Community.
After facilitating every opportunity, I waited and waited for him to get a job. It never happened. I was attached to him in an unhealthy way showing signs of co dependence. I tried to get help for myself. We tried marriage counseling. He tried getting help for OCD. We tried imago therapy. But as much as we wanted to make it work that is how much it just didn't.
We separated and it was painful for everyone. My kids were just relieved that there was no more fighting, meltdowns, and crying fits. I have started repairing.
At first we were not having any communication I was worn out and he cut himself off from me. My sister started becoming the go between and she brought it to my attention that he has Aspergers. I had always suspected it, but I was in denial, mainly because I really didn't know enough about the syndrome.
My AS son sees a nurse practice monthly for medication refills. Several months ago we saw her and I told her about our separation. She also sees my husband regularly for Prozac and Vyvanse. She assumed I knew he had Aspergers and started discussing it with me. I wasn't sure how it was so clear to her. So I started googling and reading and I came across your u tube videos. What an eye opener!!! An understatement.
I started to understand that everything I knew in my heart that wasn't right, had a name and a reason for it. Something beyond my capacity to change.
I downloaded your Ebook on Living with an Aspergers partner. I am 40% through it.
I can't believe all this time has gone by. I have been so hurt and my children have been in so much pain. My husband is 49 years old and I hope we can still save the rest of our lives. I know things will never be the way I thought they should be but I am ready to embrace a new reality and work to get the relationship to a happier and healthier place.
My husband is still having a hard time accepting his diagnosis but his nurse practitioner was very straight out with him.
My husband is not living at home but looking for work and admits to needing to help himself first and foremost.
I need a therapist to help us as a couple to move forward. How can you help us?
We have done therapy through skype in the past.
If you are not available who are the resources you recommend in New Jersey.
I have reached out to my son's social skills therapist but there is no one in our community who deals with Aspergers and especially the way you do!
Thank you again for your life altering work,

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My name is Kay. To be honest, I'm not sure if you're who I should be contacting regarding this. For the past year or more, I've suspected I may have Asperger's or another spectrum disorder but haven't been sure what to do about it. I've periodically Googled for resources, but it's difficult to find any for adults and the process for getting diagnosed as an adult is still unclear to me. (I am a 27yo female.) I happened to find your page (http://www.myaspergerschild.com/2014/08/skype-counseling-for-adults-with.html?m=1) and wondered if you are capable of diagnosing someone or if you may be able to point me in the right direction in that regard. Thank you very much in advance for any answers you may have and I hope you have a pleasant weekend.

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I have a 15 year old who was adopted 4 years ago and lived with me for a year before
that as a foster child (she is actually my niece -- but did not really know me much before hand)

We have other daughters older and one younger then her.

She just will not do what she is told, she will not interact with others in the family, and when
we have company over she acts like an angel...so her behavior is by choice.

I have taken everything away, I have tried time out, I have tried having her write sentences, essays, letters of apology -- nothing is working.

I have made her sit out of family actives, and with advance warning of her consequences she has even gone to a theme park with the family and not rode on one single ride all weekend because she will not apologize for actions, or would rather not participate in a birthday party/cake/ etc vs. just saying the words Happy Birthday to a sibling.

I am at the end of my rope, I have tried counseling and they drop her because she refuses to participate and will not speak, to therapists and psychiatrists.

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My 10 yo daughter has recently been diagnosed with aspberger's traits/tendencies. She is having trouble with school and her social circle, and her teacher is also at a loss, despite being so very helpful with her for the past year and a half. She has been in therapy for a number of years and two social skills groups, and it has just been recently that this has been suggested, and her new psychiatrist does concur.

She's incredibly bright and bored.  Home seems to be pretty stable, but we do have bumps in the road.  She is in 4th grade. we have dealt with it on and off. She did 18 months of neurofeedback and about 8 months of a token economy.  My husband says that he was just like her when he was a kid, and he could very well be aspberger's(now a successful engineer), and aware that he has some of these same tendencies.

She already goes to a public, yet alternative (open program) school.  The girls in her class as much more socially sophistocated, not necessarily in a good way, but she doesn't get it.  The more she acts out, the worse they treat her (of course), and the worse she gets.  Her teacher is great, but is about to pull his hair out.  Whenever there is a sub, she makes a point of telling them that she doesn't have to listen to them because they aren't her teacher, and it's not their classroom. He, too, has difficulty at times. She's dangerously close to puberty, as well.  It will be within the year, based on her development.

Her teacher even said we should go out for a beer to brainstorm.  That's the best kind of teacher, from my point of view!  I would love to have some ideas in mind before we meet.  Better yet, have some changes already in place, if possible.  Things seem to be worsening.

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Dear Parenting Coach:

My name is Scott Pralinsky. I'm a psychologist who works with troubled teens. I've been living and working in Costa Rica for 15 years now, and run a summer camp for teens. 

Here are the details for this years's sessions. 

We have had amazing success over the years with our youth who attend the camp. I'm very proud of what we've been able to accomplish over the years.

I'd love to have some help in promoting this experience. I'd be willing to offer you a 15% commission on any teens you could send our way who book and pay. 

I'm available to speak via phone or Skype if you'd like some information. 

Thank you for the work you do. I really feel the frustration from the parents I work with. And I'm glad you're able to support them in meaningful ways!

Warm regards,


Scott Pralinsky      
Founder & Executive Director           
Phone:  +1 218-506-TICO (8426)

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I just found your website and I am so thankful! I have a couple questions before I purchase the e-book. My daughter is 4 years old, and have a vision impairment (optic never hypoplasia) and her behavior has gotten worse and worse. Socially she is amazing! She talks to everyone and loves interacting, but when can't get her way or is removed from a place she is enjoying, all hell breaks loose, seriously. She bangs head, bites her hands or me, kicks, cries, screams at the top of her lungs, throws anything in site. This can last anywhere between 5 min to 30,40 minutes. It's exhausting. All therapist have always said she is misbehaving and frustrated bc of vision, but we just saw another one, and they feel she is on the spectrum. Is it possible for a child with Aspergers to socially be awesome and have no issues, but have horrible behavioral issues? In the beginning of school she  as being sent to the office throwing fits, throwing chairs, banging head and ect, and once she realized the routine she changed, and is not wonderful in school. At home, it's a struggle is uncontrollable fits everyday and I seriously need help. Does this sound like something your book can help me with?
I just need someone to give me guidance and stop saying it's just temper tantrums. It's been 4 years and getting worse each day.

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Dear Mark
We found your webpage incredibly interesting and hopeful and am currently subscribing to it so a huge thankyou to you for this.

My son is 17 and has AS and is struggling with anger to the point of it debilitating him, rage, stomach cramps, headache, shakes. He manages it fantastically He doesn't shout or hit anyone (he hits a punch bag or focuses on his breath) but it's the fact he manages it so well that causes the problem! He just pushes it down so every surge of anger is a response to not just that moment, but by more and more past negative experiences.
Although my husband and I want to be able to support him as best we can hence our interest in your site, we also want support for him. Do you ever come to the UK? Do you do intense focused wortk with teens with AS over in the USA? Or can you recommend any one you know who actually understands and works with teens with AS in the UK? Any help you can give us would be so gratefully received. He's so full of potential yet is terrified of himself and what he believes he could do if he lost control.

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 I am a single mom and we live in NYC. I was searching the web/Facebook for some kind of guidance/answers and OPS came up.  Quite frankly I'm  addressing you at this time out of desperation, frustration and perhaps a bit of fear for my 16 year old daughter.
She is currently an almost junior in HS, and I say almost because she didn't have the best start at HS during her 9th grade, and is now behind on quite a few credits. After many cuts, absences, IEP meetings, a visit to a neurologist where she was diagnosed with ADHD and is currently taking Adderall, summer school, Saturday school, etc. etc. things seem to get back on track. Junior year however brought unsafe sex, going to parties, smoking weed once in a while, staying out all night at unknown friend's out of retaliation (a one time thing to date), steeling a few dollars here and there out of my purse, quitting her job after only three days (not sure if she was let go instead), lying, being completely disrespectful, lack of empathy for me or any family member for that matter, outbursts of anger, cursing a lot more often and let's just say it what seems to be just plain meanness (although I know it's more profound than that). Last night I kind of hit rock bottom when she didn't show up home until 8:30pm (mind you she leaves school at 1:30pm) with no apparent reason in other words we hadn't argue nor there was an indication of specific problem/
trouble. During this period she didn't answer her cell phone, responded to any of my texts, had turned off her iPhone tracker, and so on. And the list goes on and on as you probably have heard it all over an over again in this line of work you have dedicated yourself to.

I have never attended any kind of online counseling, meetings or anything of the sort. I'm not savvy with it but I am willing to learn anything at all. She was going to therapy, I should mention but not only did she not want to pursue  it, I believe the therapist was not the right one for her either and it completely discouraged her. I am currently undergoing therapy myself and I'm hoping to bring her to one of my sessions on false pretense like my therapist needing family input or something like that, which I'm not proud of but I feel it might work and it's worth a shot. And speaking of therapist, she is the one that is suggesting I get a PINS warrant to protect myself legally and help her. I am not sure nor clear on this, and I'm certainly not too convinced on the repercussions of it.

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Mark - You write and record some great information for parents of adult children with Aspergers.  Do you also consult - via phone, Skype of FaceTime?  If so, are you available in the evenings or on weekends?

I have a son who will turn 46 years old in two weeks, and I am pretty sure he has Aspergers, but he has never been professionally diagnosed.  His mother and I divorced 20 years ago, but we are both interested in learning ways we can be of help to our son.  He's having a tough time now. Your articles are very helpful, but we'd really appreciate the opportunity to consult with you.

One thing we are concerned with is that we have never discussed the possible diagnosis of Aspergers with our son.  But there are several other things going on with our son now, and we would really like the help of a professional - for us, as his parents.  He is seeing a psychiatrist weekly, but she will not see his parents.  We live in Kansas City, and ideally would like to find a professional for us to see in person.

Thanks for all the great work you do, and I hope we have the opportunity to talk soon.

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 Hi Mark,

I run the Wives and partners of aspies page with another mental health worker.
love your work and the more people creating awareness the better, people like you Steph Holmes, Grace Myhill, kathy marshack are amazing and of course our very own Aussie Tony Attwood.

You should really come down under and hold one of you tough message to hubbys seminars...Your words, changed my life as my hubby related to you, he is a very blokey bloke with tatts,loves his V8 cars and motorbikes, and his footy..He could not relate to any of the engineer guys that is sooo stereotyped in our early days of research..

He was the guy that self medicated with alcohol from 15 and loved being social, actually a real ratbag lol

Keep up the briliant work .

 I highly respect your opinion.
I've had several ladies state their husbands and several children have also been dx with this.

I too didn't feel it was ASD specific but most likely a separate dx on top rather than crossover!

Although more and more is being understood and perhaps those with sensory issues like this may have trouble verbalising it as a difference due to it being their normal, alexithymia or even anxieties mask many truths.

Very interesting and fascinating.

Thanks ☺

Oh I'm serious about coming to Melbourne Australia, you have a gift and a way of speaking that absorbs into people and reaches them and that creates real change, that is a rare quality among ASD aware therapists.

I'm sure Tony Attwood would support and help market that adventure!

Many find it difficult to get appropriate support, and it's so painful to watch couples and families finally reach out and be told "No, your hubby is not ASD, they are far too social or not sensory enough, or they make eye contact"
Completely disregarding learned behaviours and masking skills.
I offer my time for free, I'm so passionate about educating those in NT/ASD relationships, guiding and helping those find their own balance and happiness.

My day job is a nurse lol yep another empath! We also own a garden & building supplies.

It's uncanny out of 786 ladies within the group 90% are in carer roles of some sort, many nurses, social workers, teachers, holistic guides, doctors, and therapists of all areas..

We actually laugh now when ladies introduce themselves and say they are a nurse etc

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By

Recently Diagnosed Children with High-Functioning Autism: Tips for Newbie Parents

“My 6 y/o son Josh was recently diagnosed with high-functioning autism (2 weeks ago). I have always noticed there were some issues, and now things are starting to make sense. I have a mixed bag of emotions right now. I’m new to all of this and have quite a bit to learn. I’m not sure where to start or what parenting changes I should make – if any. My question is - what methods should you use to discipline your kiddos when they have misbehaved (e.g., hitting friends, annoying his sister, has screamed at teachers… just to name a few)? Right now we are using a simple "reward" chart, which doesn’t seem to have much of an impact (so far). Any tips for a newbie will be greatly appreciated. Thank you!”


While it may be heartbreaking to say goodbye to the son you thought you had (i.e., a “typical” child with “quirks” rather than some “disorder”), you can say hello now to the son who needs you just as much - if not more - as you get to know his unique personality, and you can fall in love with your newly-diagnosed child with High-Functioning Autism (HFA) – formerly referred to as Asperger’s – all over again in ways you could have never imagined.



Acceptance-levels vary among parents. When their child is recently diagnosed with HFA, some parents come to acceptance almost immediately -- and even feel a sense of relief that there is a name for what has been going on. Other parents need more time to arrive at acceptance, and that's O.K. Then there are a few parents who seem to never accept the fact that their child has special needs and struggle with the diagnosis for a life-time.

In the beginning, be sure to look at your grief. It doesn't help to pretend to be positive when underneath you may be lonely, afraid or sad. The longing for the typical youngster or a typical existence may endure. You have to learn to live with that yearning.

Take some breaks for yourself. Your son’s treatment is important – but it isn't everything! As you get involved in the HFA community, your isolation will lessen. Granted, it is not what you were expecting, but the experience can be very rewarding and meaningful.

As you begin to get more involved in the HFA community, there will be more activity and company of others. This involvement will help you feel more “normal” because it provides more chances for interaction with other parents who are in the same boat as you. Over time, life and ideals change, and you will begin to dream new dreams for your real world.

==> How to Prevent Meltdowns and Tantrums in Children with Aspergers and HFA

Here are some simple – yet very important – “parenting changes” you will want to consider (some of these strategies will be new to you, others won’t):

1. Your HFA son must learn to appropriately communicate the cause of his aggression and get his needs met through that insight. The use of “social stories” is a great way to accomplish this goal. More information on this subject can be found here.

2. Your son will need clear routines, and if there have to be changes, he will need lots of warning.

3. You should let school staff know if your son is sensitive to certain sounds, smells or being touched. This will help them develop appropriate plans for him.

4. You do not have a “typical” child. You can view the issue as a disability, or you can view it as wonderful uniqueness – or you can view it as both! The "disability” viewpoint will help because it eliminates blame, sets reasonable expectations thereby minimizing anger, and points the way for you and your son’s teachers to see themselves as "therapists" – not victims. The “wonderful uniqueness” viewpoint will help because you really are in for a special – and often quite enjoyable – experience as a parent of an HFA child.

5. Be sure that you fully understand the difference between tantrums and meltdowns. More information on this subject can be found here.

6. Try some behavior modification. You must determine what need the “bad” behavior is fulfilling, and then teach your son a replacement behavior that will satisfy the need.

7. Think of the social world as a variety of "relationship road maps" that your son needs to perceive accurately and use talking tools to be able to follow.

8. Plan ahead. Give warnings before transitions. Discuss in advance what is expected, and what the results might be. Have your son repeat out loud the terms he just agreed to.

9. Pick your fights carefully. Is the issue at hand worth chipping away at your relationship with your son? Can your son really control the offending behavior at this moment?

10. Offer ways of understanding humor or typical childhood banter that uses available environmental cues.

11. Negotiate, negotiate, and negotiate. Moms and dads need to model negotiation, not inflexibility. You always gets to decide when negotiation is over and which compromise is accepted.

12. You did not cause autism in your son, so do not blame yourself.

13. Know that HFA kids are emotionally younger than their chronological age. So if your 6-year-old is still acting like a 3-year-old on occasion, things are going as expected.

14. Keep a sense of humor!!!

15. It may be helpful for you to arrange to attend a staff meeting to inform school staff about HFA and what this means for your son.

==> How to Prevent Meltdowns and Tantrums in Children with Aspergers and HFA

16. Be glad you discovered your son has HFA when you did – he’s only 6! It is better to find out that a child has the disorder now than to wait until he or she is much older. There are many things you can do to make your son’s future the best it can be. The sooner a parent gets the child into treatment, the better his or her future will be.

17. Instead of punishing wrong behavior, set a reward for the correct behavior you would rather replace it with. Rewards should be immediate, frequent, powerful, clearly defined, and consistent.

18. If the pressure on your son to conform in school is too great, if he faces constant bullying/teasing/rejection, or if your principal and teaching staff do not cooperate with you, then it may be time to find another school. If you decide to work within a public school system, you may have to hire a lawyer to get needed services. Your son should have an Individual Education Plan (IEP) and accommodations for the learning disabled. This may mean placement in small classes, tutors, and special arrangements for gym and lunchtime. Also, he should receive extra time for tests and examinations.

19. Teach your son to find a "safe place" at school where he can share emotions with a trusted staff member. The safe place may be the school nurse, guidance counselor, or psychologist.

20. If anxiety is so overwhelming that it is interfering with your son’s ability to manage normal activities, medication may be helpful. See your doctor to discuss this.

21. Know that “High-Functioning Autism” is just a label …it’s not a death sentence.

22. Help your son’s teachers to think about the best way to teach him and make changes to the classroom that will help his learning experience. Teachers will also want to know about the ways that you have learned to manage your son's behavior and any special routines or interests that he has and how he communicates.

23. Get to know your son’s teacher and meet regularly, along with your son, to talk about any issues that arise.

24. At the end of a “bad” day, forgive your son – and yourself. You didn’t ask to live with the effects of HFA any more than he did.

25. Find a support group. There are many organizations that want to help parents with “special needs” kids.




26. Fatigue after school is often a problem, and facing up to homework at the end of the day can be very stressful. You may need to negotiate with your son’s teachers about the learning objectives of homework and what he actually needs to do. Since many children with HFA can focus well in some classes (especially those that are built on “facts”), they may not need the repetitive learning tasks that other children need for some subjects.

27. Consistent behaviors and expectations will help reduce your son's negative behaviors. Daily routine creates stability and comfort for HFA children. Also, it helps to lessen their need to make demands on parents. When you establish a routine, you eliminate some of the situations in which your son becomes demanding (e.g., by building in regular times to give him attention, he may have less need to show aggression to try to get your attention).

28. Don't be ashamed or try to “hide” your son’s disorder. Most people know someone or love someone with autism, and speaking openly about it may help in finding others who need and want to talk about the disorder and their children.

29. Don’t argue or nag. Instead, either (a) decide that the issue is aggravating, but not significant enough to warrant intervention, or (b) simply issue a consequence.

30. Do you want to understand your HFA child`s actions? Just ask yourself: “What behavior would make sense if you only had 10 seconds to live?”

31. Celebrate your son’s unique humor, creativity, and passion.

32. Be "concrete" with your son. Tell him that the inappropriate thing he wants, or the unacceptable behavior that he is demonstrating, is not allowed. He needs to follow structured, consistent rules that will assist in modifying his behavior. Don't give in to hitting, throwing things, or yelling, no matter how hard it is not to.

33. As other children become more sophisticated with interpersonal relationships, it can become more difficult for a child with HFA to be involved in friendship groups, although they may be able to participate well in special interest groups (e.g., science groups). When managing social interactions is difficult, some solitary time can be needed and should not be seen as a “problem'.”

34. You will make it through this – you have no choice. Always keep the following ideas in the back of your mind:
  • this is hard work – and it is also hard work for your HFA child
  • the child who needs love and understanding the most will always ask for it in the most unloving ways
  • the client in autism is the whole family
  • negative behaviors usually occur because the HFA child is spinning out of control, not because he is evil

In conclusion, please resist your impulse to strive and struggle to CHANGE your HFA child …don’t strain to get desired results. Instead, enjoy the process of the work you are doing in raising him. The results you so desperately desire will come independently of your striving for them. Why? Because (a) you are doing a great job of parenting in spite of your opinion about your “parenting-skills” and (b) kids on the autism spectrum are late-bloomers. They “get it” eventually.

Enjoy the journey. Take heart. And don’t forget to take care of yourself!!!


Resources for parents of children and teens on the autism spectrum:
 
 


COMMENTS

•    Anonymous said… ABA therapy did wonders for my ASD kiddo, and for myself. It helped outline what I should and shouldn't be doing and gave me step by step instructions on how to obtain the results I wanted.
•    Anonymous said… Also recently diagnosed kids but we've been following positive parenting approaches loads of positive praise and generally turning our back on bad behaviour which is attention seeking. We make sure to remove him from any situation where he can hurt others.
•    Anonymous said… Check out "The Autism Discussion Page" on Facebook. Bill has lots of very specific advice based on years of experience. He's also turned his posts into books. They were so helpful to me when my son first received his diagnosis.
•    Anonymous said… He's 15 now, and has grown fond of praise but has a much greater affection for sarcasm and practical logic.
•    Anonymous said… I'd look for local support groups both on-line and in person. Other autism moms are going to be your best resource for information. The city I live in has both an Aspergers and a autism group that we belong to. As far as educational support that really depends on your situation. Our son has an IEP but medical diagnosis does not automatically mean school support. The rest depends on what challenges your kiddo has and you go from there. We do OT, psychologist, and psychiatrist for med management. Also do a great special needs gymnastics class which teaches social skills. Good luck it's overwhelming in the beginning figuring out where to get the support to help your child.
•    Anonymous said… If he was just dx then the phsychologist/phsychiatrist should refer you to behavior therapy and all other needed servi es.
•    Anonymous said… I'm in the learning stage too as my six year old son is currently being assessed for Autism and other disorders. It has really been rough for the family since he turned six. I just want to help him so that he can grow up as a functional man.
•    Anonymous said… My advice is. Go easy on the discipline because these issues are complex. Best to remove your child from the situation for cool down time. After he collects himself, talk to him about making a better choice next time. My 10 yo boy was diagnosed Aspie one year ago.
•    Anonymous said… My daughter was diagnosed a month ago. Where is the support for these kids?
•    Anonymous said… My son always identified positive praise in a negative way. Someone who shuts down when recieving too much attention is not receptive to positive reinforcement. I could tell he knew we were being patronizing and he didn't deserve rewards for acting
 •    Anonymous said… Pick your battles . Never become confrontational....if possible work on the reward chart with him so it's aligned to his need. We found with our son 12yr aspie that we had to constantly change the chart as boredom set in.
•    Anonymous said… Try removing him from the 'irritation' and engaging him with his 'go to/calming' activity (be it a comforter toy or a book or ...?) and then before he re-enters a similar situation talk to him about what he could do instead of getting overwhelmed.
•    Anonymous said… We use job cards and they have been working. It also helps having him know how to take care of and do things when and if he lives in his own someday. Nothing huge, but little tasks seem to work.
•    Anonymous said…I agree with easy on the discipline. Disicpline for our son has rarely worked at all. Our approach has been more of a rehearsing. We practice different situations and talk about how he should handle it if/when it happens. We practice calming techniques. We practice giving him the words to say. That way when he is in a situation we can calmly remind him how he could respond. There are some times when a consequence obviously has to happen. We outlined beforehand what those consequences would be witb input from our son. Reward charts have never worked. Our son is mow almost 12 and was also diagnosed at 6. There is no fool proof answer, and for us we just have learned as we go. Good luck.  :)

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