Learned helplessness is a condition in which the affected person feels powerless, failing to respond to adversity even though there are opportunities for the person to help himself or herself by avoiding unpleasant circumstances or by gaining positive rewards. In other words, the individual perceives an "absence of control" over the outcome of a bad situation.
Being a mother or father of a youngster with ASD or High-Functioning Autism (HFA) can be both exhausting and rewarding at the same time. As the parent, you are responsible for being your child’s advocate. Advocating on behalf of a “special needs” youngster can be both intimidating and daunting; however, armed with just a few simple “advocacy tools,” the parent’s course-of-action can run relatively smoothly.
The following “keys to success as an advocate” will show how you can become an effective activist for your child:
1. Make sure you understand all the assessments and evaluations that are going to be – or have been – conducted concerning your youngster. Always request clarification before consenting to evaluations or when reviewing test results. Ask questions such as, "who, what, where, when, why and when" …and then listen carefully to the answers you receive. Research relevant questions, and then document responses instead of simply relying on your memory. Learn how to best ask questions, and don't come across as hostile or defensive in order to get the best open and honest replies from others.
2. Avoid blaming the people that you need assistance from, and don’t be a problem-maker. An adversarial relationship between you and your child’s educator is typically never in the best interest of the youngster. It's easy to fall in the trap of blaming others – or even pointing the finger at bureaucracy – for disappointments or a particular unsettling circumstance. But blame doesn't typically result in anything more than bad feelings and a disappointing outcome. Try the opposite approach. Keep calm, know the facts, and advocate about meeting your kid's unique needs. Propose solutions or create a possible plan that works best for everyone. Be open-minded and hear proposed solutions from the educational side as well. Being an advocate is not synonymous with being pushy and demanding.
3. Be an expert in special education. It’s good to become extremely knowledgeable about special education law. Learn the details behind the federal law that effectively created special education, now known as the Individuals with Disabilities Education Act (IDEA). Moms and dads typically have goals for their children, and families of special education children in particular should establish goals – along with a strategy to obtain them.
4. Stay positive. Celebrate what is right with your youngster. Have your youngster's teachers tailor curriculum so that the focus is about “capitalizing on strengths” rather than “fixing weaknesses.”
5. Fill out an Individualized Education Plan (IEP) for your youngster. You will be thankful you have this document, which is considered legal and binding in a court of law. Add as much information to it as possible. If it is not documented in the IEP, your youngster's school does not have to follow it. Your first year may be trial and error as you learn what needs to be included and what can be taken out. If the school does not adhere to the IEP and you have contacted them unsuccessfully, you can request a hearing. If your issue is not satisfactorily handled at the hearing, you can bring your matter before a judge. The school knows how binding the IEP is, so most of the time you will never have to request a hearing. If you find that your IEP isn't being followed, you may want to consider hiring a lawyer. The IEP should include the following:
Description of any modifications in state- or district-wide assessments of achievement that are needed in order for your youngster to participate. If the IEP team determines that she will not participate in such an assessment (or part of an assessment), a statement of why that assessment is not appropriate for her and how she will be assessed.
Statement of how your youngster's progress toward his annual goals will be measured and a description of how you will be regularly informed of his progress toward the annual goals and the extent to which that progress is sufficient to enable him to achieve the goals by the end of the year.
Statement of measurable annual goals for your youngster, including benchmarks or short-term objectives. These must help him to be involved in and progress in the general curriculum, as well as meet other educational needs that result from his disorder.
Statement of the special education, related services, and supplementary aids and services to be provided to your youngster. This would include program modifications or supports for school personnel that will be provided for your youngster: (a) to be involved and progress in the general curriculum and to participate in extracurricular and other nonacademic activities; (b) to be educated and participate with other kids with “special needs” and “typical” children in all of this; and (c) to advance appropriately toward attaining the annual goals.
Statement of your youngster's present levels of educational performance, including the ways in which her disorder affects her involvement and progress in the general education curriculum.
Explanation of the extent, if any, to which your youngster will not participate with “typical” kids in the general education class and in extracurricular and other nonacademic activities.
Beginning at age 14, and updated annually, a statement of the transition service needs, and beginning at age 16 (or younger, if appropriate), a statement of needed transition services.
Projected date for the beginning of services and modifications, as well as their frequency, location, and duration.
6. Find out what type of schools are available for your youngster, and make an appointment to visit them. Some states have “special needs” schools, and others do not. Many states have different classrooms within their school for “special needs” children.
7. Parenting an ASD youngster comes with a lot of paperwork. Make sure to keep those papers neatly organized in a file or notebook. Additionally, you should always write down any questions you have concerning your youngster's care or education prior to meeting with physicians or educators.
8. Imagine that YOU are the youngster on the autism spectrum. Advocating for your son or daughter can be stressful at times, but it has to be done. Try to imagine that you are the youngster with AS or HFA. What would you want someone to do for you? Often times, thinking about the situation like this will give you the right perspective and the direction you need to become a very strong advocate.
9. Learn as much as possible about your youngster's disorder. Do your own research, attend meetings, and join support groups. Information is power, so moms and dads need to start with the facts about their youngster's disorder. Keep emotion out of it. Have fact-based knowledge from your youngster's doctors, specialists, special education experts, attorneys, educators, and anyone else who can provide information.
10. Don't just assume that your youngster’s school doesn't want to meet his or her unique needs and provide educational benefits. Most do! However, a wide range of need combined with limited resources often create the potential for conflict between (a) what reasonably can be provided versus (b) the parent wanting what she believes is "best" for her child. Moms and dads and educators should do everything possible to establish a positive, partnership-based learning approach and work collaboratively.
11. Recognize that you, the parent, are your youngster's BEST advocate. Despite the professional opinions of teachers, therapists, physicians and researchers, you know your youngster's personality better than anyone else. Don't be hesitant about calmly asserting your own views, but do so in a non-aggressive way.
12. Be assertive when dealing with physicians. If you feel something is wrong with your youngster and your physician insists there isn't, you need to take action. Request a specialist. Most physicians will give you a referral to see a specialist. There are doctors who specialize in autism spectrum disorders, and they will be more open to listening to your complaints and finding whatever is wrong. Don't discount your parental intuition.
13. Be assertive when dealing with insurance companies. Along with the physician, you are going to need to advocate for your youngster with the insurance companies. They may try to deny anything extra that your youngster needs. Don't give up. Get documentation from physicians and specialists to back up your claims. Also check with other moms and dads about what your insurance company may cover. The insurance companies won't tell you this, but you can find out by asking other parents with kids on the autism spectrum.
14. Think long-term. Moms and dads not only have the responsibility of planning their youngster's education and requirements today – they are also faced with the difficult task of thinking about the future. Be an active forecaster in setting-up your youngster's successful life down the road.
15. Questions to ponder as your child’s advocate:
Are you satisfied with your youngster’s progress in school and/or at home?
Are you tired of being told your youngster does not qualify for a special education assessment?
Do you feel comfortable dealing with your school officials or regional center representatives?
Do you feel your youngster is misunderstood at school?
Do you feel your youngster was assessed adequately and is placed in a program that fits his or her unique needs?
Do you need assistance and/or advice in your efforts to be an effective advocate in your role as parent, an equal partner during IEP or Regional Center meetings?
Do you need help overcoming road blocks in your efforts to gain appropriate services for your AS or HFA youngster?
Do you need help persuading the school to give the educators and support personnel the tools and skills to help your youngster gain benefit from the curriculum presented?
Do you need help securing services or placing your youngster in a particular program meeting the unique needs of your youngster?
Do you understand your youngster’s rights regarding education and/or early childhood intervention?
Do you understand your rights with regard to your parental involvement with your youngster’s program?
Is your youngster getting the right services?
Is your youngster reaching his/her potential?
Failing to be an advocate for your ASD youngster is not an option. If you skip over this most important role as a mother or father, the only person who is going to suffer is your son or daughter. Learning how to be your child’s hero and blazing a trail for his or her success in life is your most valuable mission!
Resources for parents of children and teens on the autism spectrum:
Christmas break gives the family a reprieve from the ordinary time spent with school and work; however, crammed schedules and unpredictable routines, mixed with the sights and sounds of the holidays, can add up to two weeks full of stress for a youngster with ASD or High Functioning-Autism (HFA) – and his or her parents and siblings. The change in routine is the biggest difficulty during the holidays. The unfamiliarity and excitement often lead to many difficult moments.
If you are the parent of a child on the autism spectrum, then following the guidelines below will help make Christmas break run a lot smoother:
1. A daily calendar can be very helpful during the Christmas break, especially to help your ASD youngster anticipate any parties or family gatherings that you may be going to.
2. Avoid taking your “special needs” son or daughter shopping on the busiest shopping days of the year. The chaos, noise of large crowds, and long lines will definitely add stress to your life. If your youngster is absolutely known to meltdown during shopping, you can select a few gifts and bring him or her home. Set up a shopping experience in your home for your youngster. The whole family can participate. Have a checkout counter and a gift-wrapping table.
3. Before you leave for holiday parties, parades, or other fun events, have a quick family meeting so your whole family knows how long you plan to stay and how you expect them to behave. This will benefit “typical” kids as well, since any youngster can get overwhelmed with the excitement of the holidays.
4. Kids with sensory sensitivities may require a little extra planning to enjoy holiday festivities (e.g., you may need to bring along ear plugs if you will be in a noisy environment, or sensory fidgets if your youngster is expected to sit still). For sensitive children who need to wear dress clothes for events, bring along some soft clothes for them to change into as soon as possible. Be prepared by knowing your youngster’s specific limitations and how you will handle them if the need arises. Don’t wait for the meltdown to begin.
5. Don’t get sucked into the “hustle-bustle trap.” None of us are very good at rushing in a relaxed way. The two just do not go together. It is impossible for ASD kids to rush without getting angry. Make sure you leave enough time to enjoy the journey and avoid meltdowns. Kids on the autism spectrum should be given notice of transitions.
6. Don’t overbook your “special needs” boy or girl. It’s important to use Christmas break for relaxation. Try staying in pajamas until noon. Pop your favorite popcorn and watch a movie when you wake up. You’ll be surprised how an hour or two of relaxation can rejuvenate your child’s body, mind, and spirit.
7. Eliminate unnecessary anxiety associated with getting together with family members you rarely see by looking through photos of relatives prior to your event. Play memory games matching names to faces. This will help your child feel more comfortable with people he may not have seen in a while. Aunt Martha won’t seem quite so creepy when she bends down to hug your youngster.
8. During family gatherings, have a code word your youngster can use if she feels overwhelmed and needs a break. Assure your youngster that, if she uses the code word, you will respond right away. Again, giving kids some control during activities that may be over-stimulating for them will reduce anxiety.
9. If your youngster has an interest in a particular item, you can use that item as a “focus point” to help him keep calm and on task during Christmas break. It can be a favorite toy, Pokémon card, stuffed animal, or anything that your youngster has a strong attachment to. You can create a few simple rules in which your youngster can have access to this item during the day. Make them easy enough so that he will have the opportunity to spend some quality time with his item of interest throughout the day and during Christmas break. This will reinforce positive behavior and make your life more enjoyable!
10. If your youngster is easily over-stimulated, limit holiday decorations in your home. Too many twinkling lights combined with smells from the kitchen and other holiday distractions, while enjoyable to most, can be too much for kids on the spectrum. Let your child help you decorate for the holidays so she is involved in the changes that take place in her environment.
11. If your child has food sensitivities or allergies that prevent him from eating holiday treats, plan ahead to offer alternatives (e.g., all-natural candy, a gluten-free treat) from home.
12. Incorporate deep breathing or other coping strategies into your day. Let your child see you use techniques when you are feeling stressed. Encourage her to use relaxation techniques on a daily basis. Breathing, visualizing, and positive thinking are powerful tools.
13. Family routines change drastically during the holidays. Bedtimes are later, naps may not be on schedule, and there is no set schedule. Make sure you start getting back into your daily routine a few days before school reconvenes so that the adjustment in January is a little easier.
14. Let your child do one thing for the holiday that makes him feel proud. Children can collect acorns, or place a few jingle bells into a bowl for a beautiful centerpiece. They can fold the napkins or put the forks out. Let them draw a special picture to place on your guest’s chair. Be prepared to accept their participation as perfect and wonderful. Restrain from correcting or straightening out the napkins and enjoy the holidays.
15. Make “notes to self.” Getting the constant chatter and lists out of your head decreases stress and anxiety. Children love making lists. Give them a clipboard or dry erase board. Help your ASD youngster make a list of what she wants to do for the holiday. It might be helping decorate, or what to pack for a self-care relaxation bag. This will help you relax and help your child feel involved. Encourage her to add happy words (e.g., smile, laugh) or draw a smiley face on her list.
16. Relax your expectations and definitions of what a fun experience is for your kids. Most of us do not need the full blown exhausting experience of holidays to reflect that we had a good time. A few positive minutes is worth a lifetime of memories!
17. Social stories, books, and movies can be a big help in preparing your ASD youngster emotionally for holidays. Comfortable clothing and small dose exposures to holiday sounds can help physically. Think ahead with an eye for “anxiety causing” issues. Is wrapping paper too loud? Use easy open bags or just decorate with a bow. Are the electronic bears with bells at grandpa’s house going to cause sensory overload? Ask him to unplug them before you get there. Let friends and family know about meltdown-triggers ahead of time. If your youngster doesn’t like to be hugged, suggest a handshake or just a wave.
18. The meaning of Christmas can be abstract and difficult for a youngster with ASD to comprehend. To make it easier: (a) prep him ahead of time about the updated school schedule and special events; (b) have pictures or social stories about what he can expect; (c) practice and rehearse what is going to happen, especially if your youngster is going to be a part of a presentation; (d) talk to the teachers and assistants about how your youngster is going to participate, and confirm that supports are in place to help him succeed; and (e) plan for a quieter evening after the event, so your youngster has a chance to decompress from the excitement.
19. If you’re wanting to get out of the house for a few hours during Christmas break, let your youngster invite a close friend to join you for a couple of games at your local bowling alley, take an adventure to a local museum, or just plan a short outing to the park to play. You can always check your local area for “autism-friendly” activities that your youngster might enjoy participating in (e.g., Christmas lights, holiday crafts, a visit with Santa, Christmas stores, etc.). If the plan is to stay close to home, you can always have a family movie afternoon, play board games together, or enjoy reading a book to your youngster.
20. Visiting friends and family will always pose a challenge. Some moms and dads insist on hosting instead of visiting a place that is unfamiliar to their youngster. If you are going to a relative’s house: (a) prepare a social story so your youngster knows exactly what to expect; (b) make sure you prepare your youngster to travel; (c) bring activities that your youngster is familiar with and enjoys doing; (d) speak to your hosts and arrange a quiet spot for your youngster to retreat to if the activities are too overwhelming; (e) if your youngster is weary of large groups and attention, give relatives a heads up about approaching him or her; (f) arrive early to set up and get comfortable; and (g) give yourself some permission to leave early if needed.
21. Your youngster can enjoy downtime when she feels over-stimulated at your house or at your relatives. Set up a “break space” and be sure that the other kids and guests know that this space is off-limits. Empower your youngster to recognize when she needs to go to her break space. No matter where you may be, your youngster needs to know that she has a special location where she can be calm, relax and enjoy some quiet time.
22. During Christmas break, try to maintain as much of your youngster’s usual schedule as you possibly can, using your knowledge of what he does each day. If he normally does something like board-work first thing in the morning, or spends a certain amount of time on Spelling before lunch, you can help him review what he has been learning at school. Making a game of your youngster’s Spelling, ScienceorSocial Studies will show him that you know his daily schedule is important. You can make this a fun experience, while still maintaining a similar routine that your youngster can feel comfortable with over the break.
Christmas break doesn’t have to be a stressful time of year for you or your youngster. I hope the strategies listed above will help your entire family enjoy this fun time of year. Merry Christmas and Happy New Year to all.
Resources for parents of children and teens on the autism spectrum:
In working with families affected by Autism over the years, I’ve noticed that a lot of young adults (ages 20 – 30 approximately) are still living at home with their mother and father, not out of true need, but out of what is known as “learned helplessness.”
This phenomenon occurs when a young adult comes to believe that he has little (or no) control over his life, and that whatever he does to try to change a “bad” situation is futile. As a result, this “discouraged” individual will stay passive in the face of any unpleasant, harmful or damaging state of affairs, even when he actually does have the ability to improve his circumstances.
As a parent of an adult child on the autism spectrum, you may want to copy and print the following information and share it with your “late-bloomer” (especially if he is a legal adult who feels powerless to “leave the nest” and start his own life):
Learned helplessness can be thought of as believing you are incompetent, that you have no control over the outcome, that it doesn’t matter what you do since outcomes no longer depend on actions, and that your actions are pointless. To qualify as true “learned helplessness,” the phenomenon should meet the following three conditions:
The adult child has to become inappropriately passive.
This change has to follow exposure to uncontrollable events.
There is a change in the way the adult child thinks about her ability to control similar future events.
The adult child with learned helplessness has certain rationalizations and self-talk that often go something like this:
“Adopting a passive stance provides me with a sense of control over my life circumstances.”
“Beating my head against a brick wall wastes time and energy and is potentially harmful.”
“Hope has its limits.”
“Persistent attempts to control the uncontrollable are futile.”
“Remaining passive allows me to conserve energy when the ‘evidence’ tells me there is simply nothing else for me to do.”
When important things happen, we tend to explain what caused the outcome. The way we explain misfortune can be analyzed along two dimensions known as “locus of control” and “generality”:
1. Locus of control: An “internal” locus of control refers to the tendency to take personal responsibility for the outcome. An “external” locus of control refers to the tendency to attribute the outcome to external events.
2. Generality: Generality refers to considering the outcome as an isolated one-time event, or as a permanent condition. Generality has the dimensions of time and scope:
Causes lasting for only a limited time are called “unstable,” while those lasing for a long time are referred to as “permanent.”
Limited scope is called “specific,” while general scope is called “global.”
Young adults with learned helplessness tend to (a) have an external locus of control (e.g., “I have no control over what happens to me”), and (b) view unwanted outcomes as permanent (e.g., “Because I didn’t get hired for that job this time, I probably won’t get hired for any other job ever”).
Consider these four different ways of explaining why you did poorly on a job interview...
Specific time and scope:
“I didn’t prepare this time for this job interview” (internal locus of control).
“The person doing the interview wasn’t fair” (external locus of control).
General time and scope:
“I’m never any good at being interviewed for a job” (internal locus of control).
“All job interviews are unfair” (external locus of control).
People have characteristic explanatory styles they habitually use to explain why things happen. Attributing causes to “internal specific” factors explains outcomes in terms of behaviors (e.g., “I didn’t get hired for the job this time”). The unwanted outcome is attributed to a single isolated instance of poor performance. This is an “optimistic” explanatory style for bad outcomes, because your behavior can be modified to best suit specific events.
Attributing causes to “internal general” factors explains outcomes in terms of character traits. (e.g., “I didn’t get hired for the job because I’m incompetent now and always”). This is “pessimistic” for bad outcomes, because character traits remain largely constant over time.
Now consider the possible explanations when something good happens. Here are four different ways of explaining why you got hired for a desirable job:
Specific time and scope:
“I was skillful in answering the interviewer’s questions this time” (internal locus of control).
“This interviewer was fair this time” (external locus of control).
General time and scope:
“I’m usually skillful, especially with answering questions during job interviews” (internal locus of control).
“The job market is getting better. I must have got lucky this time” (external locus of control).
Here the optimistic individual takes full credit when things go well, attributing the good outcome to internal rather than external factors. The optimist takes broad credit for good outcomes, but narrow responsibility for bad outcomes. Attributing the good fortune to your generally good character (rather than specific behavior) is optimistic. The optimist:
Adopts an external locus of control when things go bad
Allows himself to dream and see possibilities
Attributes bad outcomes to external factors and rare circumstances, or to narrowly isolated mistakes
Discounts or dismisses risks
Fuels aspirations of hope
Inspires others
Is bold
Is undaunted by defeat
Is unlikely to suffer from anxiety or depression
Personalizes and adopts an internal locus of control when things go well
Recovers quickly from setbacks
Seeks to advance
Seizes the possibilities
Sustains the effort and persistence required to overcome obstacles
On the other hand, the pessimistic individual attributes good outcomes to external events, including uncharacteristically good luck. The pessimist blames himself broadly for bad outcomes, but attributes good outcomes to external factors. The pessimist:
Adopts an external locus of control when things go well
Attributes good outcomes to external factors or luck
Blames himself broadly for bad outcomes
Highlights and emphasizes risks
Highlights problems
Is likely to suffer from anxiety and depression
Is overly concerned with safety
Is timid, conservative, and protects what he has
Personalizes and adopts an internal locus of control when things go bad
Promotes caution, critical thinking, skepticism, and defensive measures
Recovers slowly, if at all, from setbacks
Wallows in defeat
Explanatory Styles—
Research shows that explanatory styles are primarily “learned” rather than inherited. You learned how to explain bad things from three main sources:
1. You learned your own explanatory style from major life crises. If you experienced a crisis (e.g., a house fire, divorced parents, bullying, poverty, etc.), you noticed if those major life-stressors got resolved after a short period of time, or if they persisted for a long period of time. If the crisis got resolved quickly, then you learned to believe that adversity is specific, temporary, and can be overcome. If the crisis expanded and never ended, you learned to believe that adversity is permanent and pervasive.
2. You modeled how your mother and/or father explained adverse events. If your parents tended to blame themselves (or you) broadly when bad things happened, you probably noticed and learned this pessimistic style.
3. You learned your explanatory style from the other adults that cared for, disciplined, taught, and criticized you (e.g., teachers, coaches, other authority figures). When these adults blamed your character or personality whenever bad things happened, you quickly learned to blame yourself using personal, permanent, and pervasive explanations for why things go wrong.
The style you learned for explaining adversity typically persists throughout adult life. But, you can learn to dispute your pessimistic explanations. If you tend toward pessimism for adverse events, you can learn to dispute your own reasoning and adopt more objective, accurate, and optimistic explanations. Remember that in blaming yourself for a bad outcome, you are accepting a fallacy of “disproportionate responsibility.” Generally, many causes contribute to each result, outcome, event, or incident. For example, the causes contributing to an automobile accident may include:
choice of route
choice of time and schedule
choice of vehicle
design of the automobile
design of the road system
driver attention
driver preparation
driver training
maintenance of the automobile
manufacture of the automobile
obstacles
other cars and drivers on the road
passenger behavior
pedestrians
traffic signals
weather conditions
...and numerous other factors
So, be objective when assessing blame or taking credit. Divide the responsibility for the bad result (or good result) evenly among all those involved in the situation, based on how their inactions (or actions) affected the result. Maybe you must take some of the blame, or deserve some of the credit, but it is unlikely you or they are 100% responsible for the outcome. Become your own defense attorney, re-examining the evidence, challenging assumptions, considering other possibilities, and offering alternative explanations.
Let’s use the “job interview” example again to illustrate this concept...
You didn’t get the job following an interview, so you automatically blame yourself, believing “I’m just not any good at making a good first impression.” As a result, you feel ashamed, mildly depressed, discouraged, or overwhelmed. Now it is time to recognize that you are not helpless – it’s time to dispute your hasty, inaccurate, and pessimistic conclusion.
What does the evidence say? Certainly you have made a good first impression in your lifetime to get to where you are now. You were able to make at least a few friends over the years who liked you and wanted to spend time with you. You “won them over” by making a good first impression. This evidence clearly disputes your pessimistic belief that you are never any good at impressing people.
What additional contributing causes are there for you not getting hired based on one job interview? Maybe you were upset about some recent problem (e.g., a fight with your lover, your car broke down, etc.). Maybe you were under unusual stress, needed extra help from a job coach, didn’t prepare adequately for the interview, or didn’t get a good night's sleep the night before. Maybe the person conducting the interview was looking for someone with a specific skill-set. With so many factors at work, it’s inaccurate to attribute blame entirely to yourself, and it is certainly an over-generalization to extrapolate from this one occurrence to a general, pervasive, and persistent conclusion.
A more accurate explanation is that you did poorly on this particular job interview for some isolated reason (e.g., poor preparation, lack of experience with interviews, fear of being under-qualified for this particular job, etc.). This isolated problem can certainly be overcome, and there is no need to feel ashamed or helpless. Put this setback into the past, address any specific issues, and go about preparing for the next job interview. Take responsibility only for what you did and what you can change.
Learned helplessness is also pertinent to your health. Several studies show that an optimistic explanatory style is linked to good health, and a pessimistic explanatory style predicts poor health. Mechanisms probably include biological, emotional, behavioral, and interpersonal factors. Research also suggests that learned helplessness is an important mechanism contributing to passive behavior in aging, athletic performance, chronic pain, and unemployment.
As Henry Ford said, “Whether you think you can, or think you can't, you're probably right.”
