More articles for parents of children and teens on the autism spectrum:
Social rejection has devastating effects in many areas of functioning.
Because the ASD child tends to internalize how others treat him,
rejection damages self-esteem and often causes anxiety and depression.
As the child feels worse about himself and becomes more anxious and
depressed – he performs worse, socially and intellectually.
Meltdowns are not a pretty sight. They are somewhat like overblown
temper tantrums, but unlike tantrums, meltdowns can last anywhere from
ten minutes to over an hour. When it starts, the Asperger's or HFA child
is totally out-of-control. When it ends, both you and your child are
totally exhausted. But... don’t breathe a sigh of relief yet. At the
least provocation, for the remainder of that day -- and sometimes into
the next - the meltdown can return in full force.
Although Aspergers [high-functioning autism] is at the milder end of the
autism spectrum, the challenges parents face when disciplining a
teenager on the spectrum are more difficult than they would be with an
average teen. Complicated by defiant behavior, the teen is at risk for
even greater difficulties on multiple levels – unless the parents’
disciplinary techniques are tailored to their child's special needs.
Your older teenager or young “adult child” isn’t sure what to do, and
he is asking you for money every few days. How do you cut the purse
strings and teach him to be independent? Parents of teens with ASD face
many problems that other parents do not. Time is running out for
teaching their adolescent how to become an independent adult. As one
mother put it, "There's so little time, yet so much left to do." Click here to read the full article…
Two traits often found in kids with High-Functioning Autism are
“mind-blindness” (i.e., the inability to predict the beliefs and
intentions of others) and “alexithymia” (i.e., the inability to
identify and interpret emotional signals in others). These two traits
reduce the youngster’s ability to empathize with peers. As a result, he
or she may be perceived by adults and other children as selfish,
insensitive and uncaring. Click here to read the full article...
Become an expert in helping your child cope with his or her
“out-of-control” emotions, inability to make and keep friends, stress,
anger, thinking errors, and resistance to change.
A child with High-Functioning Autism (HFA) can have
difficulty in school because, since he fits in so well, many adults
may miss the fact that he has a diagnosis. When these children display
symptoms of their disorder, they may be seen as defiant or disruptive.
Because it can be exasperating for parents to deal with the behavioral challenges of a youngster with Asperger’s (AS) or High-Functioning Autism (HFA), it can be reassuring for them to know that some of the negative behaviors of their son or daughter often become positive traits in adulthood.
For example, the child who doodles and draws all through school may well become an artist; the most manipulative youngster often turns out to be a remarkable leader, entrepreneur or politician; the most obstinate youngster often turns out to have fierce determination; and the youngster who argues all the time (like a jail house lawyer) may actually become a lawyer someday.
This pattern has been evidenced again and again throughout my experience in working with families affected by autism spectrum disorders:
One bright child with AS and ADHD who was impulsive, highly distractible, and had a poor attention span, grew up to be an exceptional emergency healthcare specialist. In an emergency, his adrenaline was apparently stimulated, so he became highly focused, able to put his analytic abilities to use while doing several tasks at once.
One very hyperactive youngster with AS turned out to be a very enthusiastic, productive entrepreneur.
Another child who sold his mom’s jewelry for 50 cents apiece grew up to be a real estate tycoon.
One child who was an incessant tinkerer, taking everything apart, became a mechanical engineer.
One boy who tried to help his peers avoid arguing, and who was teased because he was always trying to keep the peace and never projected any opinion of his own, became a mediator.
Another child who was very inflexible became an airplane controller who could focus intensely on the task at hand.
Self-care needs to be a priority for moms and dads of kids on the autism spectrum. For example:
Parents need to find supportive relatives and friends.
They need to locate a support group or an online parent support community that will provide a place for them to vent frustrations and obtain valuable suggestions and parenting strategies.
Parents need to develop a strong sense of humor. The youngster with AS or HFA needs to feel that it is not the end of the world that he has a disorder – and he needs to be able to laugh at life’s odd twists and turns, rather than taking life too seriously. Moms and dads, too, need resilience and humor. When they can have fun, and be silly with their child, everyone benefits.
Moms and dads themselves need nurturing to help nurture their youngster on the spectrum.
They need more sleep than other parents do, because the child with “special needs” can sap his parents’ energy; his disorder demands constant assistance.
And, parents need to go out and have fun regularly – away from their child.
It’s challenging to be a parent of any child, but it’s even more difficult to be a parent of a youngster with an autism spectrum disorder. In these special cases, parents need to become an organizer, interpreter, analyst, advocate, a spiritual advisor, psychiatrist, problem solver, notetaker, lawyer, a friend and companion, a disciplinarian, and a cheerleader. That’s certainly juggling a lot of balls all at once! But the payoff will be worth it.
Someday, your high-functioning child may very well start his or her own business, become the Mayor of your city, the CEO of a major company, an engineer, or a medical professional. So, when your AS or HFA child becomes successful in adulthood, don’t be surprised – and remember I told you so.
Resources for parents of children and teens on the autism spectrum:
“My 5-year-old son with high functioning autism suffers with poor planning abilities and disorganization. It’s feels like the most difficult job in the world to keep him on task. Any tips on how I can help him cope better with the everyday responsibilities and routines that are expected of him, such as keeping track of time, completing chores and online homework, not being so messy, and so on?”
Time and space are organizing procedures involved in every aspect of life. However, due to poor organization skills, central nervous system dysfunction, and neural immaturity, many kids with Asperger’s (AS) and High-Functioning Autism (HFA) are very disorganized (e.g., appearing lost in time and space, likely to lose belongings frequently, unable to accomplish even the simplest task in a timely fashion, difficulty following instructions, unable to keep their rooms clean and orderly, etc.).
Difficulties with “sequencing” explain why these young people have trouble remembering things (e.g., the seasons, the alphabet, days of the week, the order of tasks and instructions, etc.). These issues are why they have trouble starting projects, sustaining them, and completing them.
Poor organization skills often affect home life, relationships with peers (who will take only a certain amount of forgetting and lateness), and academic life (e.g., forgetting to bring home their homework, not having the time-management skills to meet deadlines, difficulty establishing priorities, difficulty knowing what is most important to study - and what is less so, etc.). Sometimes, this disorganized behavior can appear to parents and teachers as simple defiance, when actually it stems from the very nature of the disorder.
12 ways to help children on the autism spectrum develop time-management and organization skills:
1. Make use of picture schedules. Kids with AS and HFA prefer having a routine. Having a visual schedule to refer to will make your son more aware of his routine and help him cope with changes when they occur.
2. Developing clear and reinforced routines can help with structuring time. Breaking routines and other tasks into manageable chunks and communicating what must be done first, next, and last is crucial. For example, if the youngster has to read a book and write a report, the manageable chunks would be: (1) locate the desired book, (2) read the book, (3) write down the basic book report information, and (4) summarize the book in writing.
3. Color code items (e.g., put some blue tape on a math text book along with blue tape on the math note book).
4. Set up specific areas for different activities (e.g., homework area, art and craft area, etc.). Also, get the appropriate tools for each area (e.g., a comfortable chair and a bookshelf in the reading area, shelves for puzzles and games in that area, tables for the child to work at in the art and craft area, etc.).
5. Planning is essential to time-management. For example, if you are going to the museum, have your child make a list of what exhibit he wants to visit first, second, third, and so on.
6. Parents - and teachers - can assist these “special needs” kids by engaging them in planning activities (e.g., organizing what needs to be done to collect food for the homeless, planning a garden, planning celebrations, and planning that involves developing lists, going shopping, checking off the lists, and then charting the tasks still to be done - which can then in turn be checked off).
7. Make use of visual timers so your child can see how much time is left. This will teach the concept of time in minutes or hours.
8. Help your child to organize his own stuff by category (e.g., cars and trucks together, specific types of games together, etc.) in large baskets or bins. Label the baskets with pictures so he will remember which baskets are for which category.
9. Every day, set a special time for the child to put things away, make notes in his planner, and clean up his work space.
10. Some AS and HFA children have language learning disabilities (i.e., trouble deciphering language, listening, following instructions, etc.). Thus, it is helpful if parents and teachers limit the number of words used in giving directions (e.g., making use of simple phrases such as “go upstairs” … “close the window” … “come down” …etc.).
11. Get a simple daily planner or agenda book and have the child write down everything each day (e.g., homework assignments, chores, favorite television shows, etc.).
12. Lastly, there's a variety of time-management apps that go beyond simple list-makers. Here are some of the best ones available today:
Evernote (iPhone, iPad, iPod Touch, Android, Kindle Fire, Nook HD): The child can access his notes, images, lists, sounds, and links from any device or computer with this productivity app.
Skitch (iPhone, iPad, iPod Touch, Android, Kindle Fire): An Evernote add-on that allows the child to annotate and share images (e.g., maps, photos, original sketches, etc.).
My Video Schedule (iPhone, iPad, iPod Touch): This scheduling app teaches structure, time-management, and motivation.
Remember the Milk (iPhone, iPad, iPod Touch, Android, Kindle Fire): A task-organizing app to stay on top of everything that needs attention.
TextMinder SMS (iPhone, iPad, iPod Touch): The sound or vibration of a text message serves as a one-off or recurring reminder.
Time Timer (iPhone, iPad, iPod Touch, Android): This app teaches time-management skills while encouraging the child to work efficiently and stay on task.
Timers4Me - Timer & Stopwatch (Android, Kindle Fire): The child can use his own ringtones and images with this app for multiple timers, stopwatches, and alarm.
All of these apps are useful, engaging, and have the hidden agenda of developing time-management and organization skills.
More resources for parents of children and teens with High-Functioning Autism and Asperger's:
“My son Noah age 10 has been diagnosed with autism (high functioning). He has always been difficult at home, and now I am getting repeated bad reports from his online teacher. Honestly, I feel like I’ve failed my son. I feel like I'm losing my mind at times just trying to make his life easier. Add my other kids too, and it is just pure chaos or eggshells to try to keep Noah from an episode. I’ve tried everything I know to do to help, but my son still remains a mystery at times. All I know to do is keep trying and try to be patient, calm, and strong. I would be curious to know if there are any other parents that feel like they ‘should have’ done a better job. Is it normal to feel like a ‘bad’ parent in this case?”
Discovering a youngster’s special needs is often a puzzling and agonizing process for parents. It’s no surprise that your son with High-Functioning Autism (HFA) often mystifies you. As with all children on the autism spectrum, your son has many skills – and deficits. Also, you may have great difficulty understanding how much of his behavior is the nature of the disorder versus how much is simple defiance.
Due to the fact that parenting “special needs” children can so confusing at times, it’s easy for parents to fall into the trap of feeling inadequate and discouraged (e.g., “My child has so many unresolved problems, therefore, I must be a bad parent”). Most parents raising “typical” children do not realize how difficult it is to be a mother or father of a child on the spectrum… until they become one of those parents.
Since the symptoms of an autistic child who is “high-functioning” can be so subtle, multiple and difficult to pinpoint, it’s hard for a mother or father to know whether things are normal or not. For example: What are the indications of a child being off course in his or her ability to listen and follow directions? What is the difference between the youngster who is a little clumsy and one who is having significant motor skills problems? What is the difference between a healthy, very active child versus a hyperactive one with HFA? Are my expectations for my child unreasonable? It will take some time for the parent to recognize and articulate concerns about such a child.
Even after a diagnosis, the parent may face a multitude of feelings before she can grasp effectively with the glaring truth that her youngster has a developmental disorder. The parent may even move through a grief cycle that Kubler-Ross described: (a) denying there is a problem, as well as rationalizing why it’s not a problem; (b) dealing with the fear, anger and guilt of having a youngster who experiences many problems; (c) blaming others for the difficult situation; (d) bargaining (e.g., thinking that changing neighborhoods, schools, or physicians will make the situation better); (e) grieving for “what might have been”; and (f) finally coming to acceptance regarding the youngster’s strengths and weaknesses, as well as trying to figure out an effective plan of action.
One of the biggest challenges caretakers may face is the big gap between what their youngster can do – and what he can’t do. Oftentimes, the HFA or AS child is very smart, can reason well, knows a great deal about his favorite subject, yet can’t read or write. Your child’s teacher – and even you, the parent – may be telling the child to “try harder.” But in many cases, the “special needs” child is trying his heart out. These kids often tend to work 10 times harder than their peers, but are still called lazy, spoiled, or “a brat” by some people (e.g., extended family members who have no clue how difficult the challenge is).
Another piece of the puzzle for the parent lies in how difficult it can be to differentiate between a youngster who “can’t” do something versus a youngster who “won’t “do something. For example: “How much parental control should I exert?” … “How far should I ‘push’ my child?” … “How much should I reduce my expectations?” In this uncertainty, the parent may even ask herself “what is wrong with me?” – instead of asking “what trials and tribulations is my youngster having to face?” Shifting this focus can be beneficial for both the parent and child.
The HFA youngster may seem to be having behavior problems when, in fact, she is simply struggling to accomplish a task. She may experience a meltdown or a shutdown when a task is too demanding. When the child says she hates something, it’s very difficult for the parent to know if she is being defiant – or simply finds the task to difficult or impossible to complete. For example, if the child hates math or reading, these are likely areas of difficulty. If she loves dance, music, or art – but hates drama – it could be that she has a speech or language problem. On the other hand, what she likes and wants to do usually serve as an indicator of her strengths.
While a formal diagnosis can help, the task of sorting-out these problems on a day-to-day basis is quite a challenge. On a planning level, uncertainty can occur because the child’s teacher, doctor, psychologist or social worker may disagree not only on the diagnosis – but on the optimal treatment strategies or programs for the “special needs” youngster.
This can be aggravating and stress-provoking for the mom or dad who has to pull all the information together and decide what to do – right or wrong. In addition, at home and elsewhere, the parent has to anticipate problems and sense when her child is frustrated, tired, or about to explode. The parent has to trust her gut as to how long her youngster can last at a party, be pleasant with visitors, or sit in a restaurant.
Moms and dads of kids on the spectrum are continually trying to figure out what’s working, what’s not working, what causes the youngster’s aggravation, and what brings the youngster enjoyment. The parent must (a) think carefully; (b) support the youngster’s development; (c) reflect on activities of each day; (d) problem-solve to recognize her youngster’s strengths, interests, and areas of difficulty; (e) come up with plans for managing the youngster’s behavior; and (f) analyze everything! All of this takes time and energy that can be draining at times.
Parenting strategies that include structure without rigidity, nurturing the youngster’s strengths and interests, constant approval of positive behavior, and clear/concise instructions will go a long way in overcoming the obstacles associated with parenting a child on the autism spectrum.
It will take time for both the parent and child to embrace the idea that “being different” does not mean “being inferior” – and in fact, can be a good thing. The parent needs to be nurtured and praised too in order to help her nurture and praise her HFA youngster. You may find that you have used almost every resource you have to help your youngster succeed, but still worry that you are not doing a “good enough” job. But you are! You’re doing the best you know how given the circumstances.
Resources for parents of children and teens on the autism spectrum:
• Anonymous said… Hang in there. A good school to support you really helps. Every child is wired differently. I have had people yell at me and even was escorted from a mall. I love my son with all my heart. I forgive those people. There is hope. My son is 17 now and he has learned some coping skills. We don’t get out much but that’s ok. He gets out sometimes. God is our strength and our hope. I will pray for you.
• Anonymous said… he is now at a small private school specifically for kids who just don't do well in the public school system. In Florida, there is a scholarship called the McKay Scholarship for kids which basically gives you the money that the public school system would have used on your child and lets you use that money for private school, so it is free.
• Anonymous said… I can totally relate to this parent. My son is seven with aspergers. The last two terms has been so bad that the school even calls us to say he need not attend today or call us to come and fetch him. We also have a baby that's also demanding and trust me some days you feel like your only options are to either climb in your car and drife away from the mad house or collapse into a shivering bundle on the floor in a fetal position. As he gets older it feels like the meltdowns and struggles become worse. Where we had 2 bad days in a week or two now we have 2 or 3 good days in a week. We both feel on a daily basis that we are failing our son but you must just pull yourself together and try again the next day. Feeling like a bad parent comes naturally to any parent even ones with children without conditions. Dont beat yourself up.
• Anonymous said… I do know how you feel. My son is ten and has been diagnosed with ODD and ADHD but was first thought to have Aspergers which I still as his mom, ( living in East tx. There are maybe ten or less specialist, 3 take this disability insurance) think he has the violent form of absorbers I've often read about! Maybe it's ODD/absorbers combined?!! Patience, lots of it and do NOT forget the struggles of the siblings. It's very hard on them too. Mine cry often and have separate therapy bc We want to help but our hands are tied! Demand the school adjust or you sue!! Many lawyers are dying to take a discrimination case!! Bc they have to have a program to fit your child's needs. Mine made one and low and behold filled it with 5 other kids a similar issues, poor kids!! Stay strong and always know you aren't alone. My son gets restrained before school quite often n complete strangers come up to me n hug me. Others do care !
• Anonymous said… I felt that way all the time throughout my son's elementary school years. However, since starting middle school and removing him from public school (which I realized was causing a lot of his problems) he has made soooo much progress. It definitely get easier as they get older and can explain how they feel and what bothers them, etc. I think when my son was younger not only did I not understand a lot of his behavior, he didn't even understand what he was feeling and doing half the time. He's got a much better grip on things now, and we have a great understanding between us now. So, there is hope! Those first few years of school were the absolute hardest for us. Just be there for him and listen to him. ❤️
• Anonymous said… I just exhaled, thank you all. I try to ignore this nagging feeling odor doing right by my son. He is fourteen and I have been homeschooling him for two years. I couldn't take the morning meltdowns every day and withdrew him from public school. The meltdowns are better but now I never get a break and miss those few hours at home alone when he was in school. Then I wonder how effective I am at homeschooling and whether I'm doing the right thing. Sometimes I get mad at him and wish he could just be normal then I get mad at myself for even thinking this.
• Anonymous said… I think we all have moments where we worry that we are failing our child or should be doing something differently. I think that is normal to be honest. There are emotional days (for us and him), but also days of fun and laughter and silliness. You have to take the good with the bad I guess? Hugs to all of you going through this. Sometimes it feels so lonely
• Anonymous said… I wish I could talk to this person directly. I am going thru the same thing.
• Anonymous said… I'm at a loss and don't know what to do anymore. My son disobeys me and now tells me things that hurt so much. How did it become this bad?? Am I such a shitty parent that he now tells me he hopes I die?? Ugh.. 😠😠ðŸ˜
• Anonymous said… I'm so grateful to hear others struggle this way too. It is exhausting and hard for the whole family. Watching our child have meltdowns, and watching what it does to our other children, I've started to feel hopeless and like a failure.
• Anonymous said… My daughter got diagnosed at age 3, she has great support at school and also at home, it takes time to get the right help but there is hope, also a lot prayer helps.
• Anonymous said… My son didn’t get diagnosed until he was 17 even though I got him referred to CAHMS 4 times the forth time he was so poorly that they believed there was a problem don’t beat yourself up you try everyday and that’s all that matters My sons now 20 and he has very little help and support from professionals it’s just me my son is having fun enjoying his interests that’s fine with me whatever makes him happy
• Anonymous said… Regularly beat myself up for 'bad' parenting and then beat myself up for being so hard on myself.... all you can do is make the best decisions at that time...sometimes it blows up in your face....take a breath, read some more, get some help, celebrate the positives and hang in there
• Anonymous said… Trust me, you are NOT a failure. I don't wish others to experience hard times but it is nice to know I am not alone in this struggle. There are good days and not so good days. And times when the older children accuse us of always giving in to Austin because he's a brat. I try to explain how he sees things different, experiences differently and responds differently. Keep your head up, you are not alone.
• Anonymous said… Very normal to feel this way & don't give up. We do the best we can with the tools were given. There will be days we are at our best & days we are not & it's ok, part of the journey. Parenting a child with Aspergers takes a special kind of love & it sounds as though you have it. Most important thing I can share is self care. The healthier we are as parents the better our children will be. Build a support network & allow yourself to ask for breaks/help , it's the best gift you can give yourself & your family.
• Anonymous said… wow, that is amazing. We have an incredible school near us, that people from all over the world come to. It is for higher functioning special needs, but it's incredibley expensive ($40K a year!). I keep thinking if he needs it eventually for high school, it is an option (with scholarships, because who can afford that much!).
• Anonymous said… You are not a bad parent! You only know what you know at the time. Now you know he's on the autism spectrum and you take that information and learn how to parent an autistic child. Stay strong but everyone needs to break down once in awhile and take care of herself first so that you have enough to give to your children. You are not a bad parent and your son is not a bad child you are both just incredibly overwhelmed.
