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Autism Spectrum Disorder and Family-Stress

"I have two boys, one of which has ASD [high functioning autism]. My husband has been diagnosed as well. I often feel like I'm in a constant state of playing mediator (and sometimes feel like I'm parenting 3 children, rather than 2 children and one adult). Is this common for families like ours, and what can I do to reduce our stress?"





Being a member of a family in which one or more members have ASD Level 1 or High-Functioning Autism (HFA) can be extremely stressful at times. Sometimes it seems as if the entire family focus is on the "special needs" child and on the various tantrums, meltdowns, and other and behaviors that come with it. ALL family members can feel a low level of anxiety in anticipation of what could happen next.

Are you too stressed? Ask yourself these questions:
  • Are symptoms of stress impeding my functioning?
  • Am I finding it hard to get through the day's activities?
  • Am I having a hard time eating, sleeping, or getting up in the morning?

Discipline for an autistic youngster is often very different than the way you would discipline a neurotypical child. So a parent is often left feeling helpless and not knowing what to do, and feeling they have nowhere to turn in getting a break from parenting. In fact, a lot of moms and dads actually feel guilty for even wanting a break, let alone taking one.

The idea of a few hours away from their youngster makes them feel as though they are failing him or her as a parent. For some reason, some parents feel that to parent their "special needs" youngster, that means being around him/her and caring for him/her 24/7 without any outside help.

As one wife/mother stated:  
 
"Being the only neuro- typical is a nightmare! My life has never been mine to live as I want. You lose yourself to keep the peace. Believe me when I say: Living like this can scar you for life. You never blossom because you are in a constant compromising caregiver position. Married for 25 years without empathy from anyone is sheer agony. I used to be the crazy emotional one; that side of me got squashed along with any dreams or expectations of loving behavior. This is my life. I will always be married to an Aspergers spouse and a parent of 2 ASD adults." 

If you're exhausted and overwhelmed on a regular basis, you're more susceptible to physical and mental disorders. You may need time and help to recharge your batteries and find coping mechanisms. And it's important to take action now for the future. After all, when you're the mother or father of an autistic youngster, you're in it for the long term.

Take steps as a parent to take time for yourself away from the situation when things feel overwhelming. Take turns with the other parent so you each have peaceful times away from the situation. When possible, spend one-on-one time with the other children in the home. This will reduce their stress level as well.


Get plenty of sleep. If your ASD son has difficulty sleeping, speak with his doctor to find ways to help him sleep better so you can get your sleep, too. Don’t be afraid to take naps so you have enough rest to cope with whatever comes.

Don’t skip meals and eat as healthy as you can. If your son is on a special diet, make sure that the rest of the family - and you - get the type of nourishment that suits you best and revives your energy levels.

Consider exercising with or without your son. Take walks or bicycle rides to calm your nerves and increase your body’s endorphin levels. Stress levels automatically decrease with exercising just a few times per week.

Hire a competent babysitter, get family to help, or  ask a friend for help! The point is this: Get out of the house alone or with your spouse for a few hours and enjoy yourself. You can’t change any of the issues your son may have, but you can get a break. You can get out a few hours a week alone to unwind and you can get help to allow you to get that much needed break.

Some herbal supplements like kava kava, valerian root, and St. John’s Wort have relaxation and calming properties. In serious situations, these herbs can come in handy when you just can't seem to stem the anxiety on your own.

If the family appears to be in crisis over the stress and anxiety of some of its members, family therapy can be very helpful. Individual therapy is also an option for those family members needing extra help. Often the therapist can coach you in the coping skills necessary to stay healthy and to raise your HFA child as best as is possible.

An experienced professional can help give you concrete ideas for finding time and space for yourself. He or she can also work with you to develop specific coping strategies. Changes in attitude can make a big difference, and there are many ways to work on your own feelings. It may also be helpful to have an appropriate time and place to let out pent-up frustration that's so often a part of coping with a youngster who has an Autism Spectrum Disorder.

The main thing parents with an autistic  youngster need to know is that they are not alone. There is help out there! Even if you are a single mom raising kids alone, there is help. It's up to the parent, however, to realize that it's not a sign of failure as a parent to need and accept help in caring for the autistic child.

Children on the autism spectrum are special indeed – and we love our children very much. But we as moms and dads need to be able to unwind and relieve the stress so that we are better able to parent. Never feel guilty for needing to ask for help - or needing time for yourself! Bottom line: If you're not the person you normally are, then that's a reason to get help, or at least consider that possibility.
 
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Kids on the Autism Spectrum: Problems with Board Games

"How do I make my child understand the rules of board games like monopoly? He wants to play it only his way and gets extremely angry if he has to pay a penalty. He does not understand the sets of rules for different games and only wants to win with his own rules."

The child with ASD level 1 or High-Functioning Autism (HFA) may get upset over game rules, sharing, or taking turns. This applies especially when following the rules means that sometimes the child with HFA loses the game! Hence, your son’s insistence on playing with his own rules. He does not understand that others want to win a game sometimes, too. And, even if he does come to understand that, he may not care about their feelings enough to play the game appropriately.

While some children act as “the warden” or keeper of the rules, others find it hard to grasp the give and take of peer relationships, including following rules while playing games with others.

To help your son with this problem, target “fairness” strategies. Step-by-step, teach causes and effects in feelings, behavior, and consequences, along with how following rules and social/emotional reciprocity leads to positive rewards. But of course that is much easier said than done!

Many children on the autism spectrum are more successful in structured situations. Playing games on “neutral turf” in the community often provides the means for structuring activities. For example, a play date at mini-golf has an inherent structure and it will be difficult for your son to change the rules, as other players can say, “Everyone has to follow the rules of the golf course.” Pair him with a friend who understands his difficulty. The friend may be able to help him accept the fact that rules are necessary.


If you son has trouble taking turns, plan some games that are based on just that! For example, in Parcheesi, all players might be given “a point” when they take a turn when they are supposed to and don’t complain when others have a turn. Write the points down in clear view of everyone. At the end of the game, these points are added up. For each 10 points earned, a small reward is given, such as an M&M, a penny, etc. Everyone participates and everyone earns the reward – a bigger amount of reward is earned by the players who are most cooperative at taking turns. Don’t take points away for misbehavior or your son may not get any reward for the times he did behave appropriately!

In the card game War players choose a card, turn it over and the highest card takes both. The person with the most cards at the end wins. This can be a learning experience for your son. Play with only cards 2 through 10 as the face cards may be confusing. In this game, your son may win often enough to prevent him from becoming angry. If not, explain to the players that as well as the highest card taking both, each player who accepts losing a card gracefully will earn a point. Write the points down in clear view of everyone. Give a reward for highest points at the end, as well as one to the winner of the most cards.

Chutes and Ladders is a good game for your son to play as it’s difficult to change the rules. You roll the dice, move, and either climb the ladders or slide down the chutes. Again offer points for gracious acceptance of sliding down a chute. The winner at the end and the one with the most points both should receive a small reward. Parcheesi is another good game that is simple, requires taking turns, and rolling the dice to determine moves. There are no penalties involved to create frustration.

Many children with HFA enjoy computer or hand held, electronic games. With a little research, you can find games that will interest your son. Start with the simplest ones; ones at which he can easily be successful. The penalties and rewards are built in. He won’t be able to change them or the rules. If he gets angry while playing, he’ll have to learn how to move beyond anger to win the game. If he gets physically angry (hits the computer or throws the game, etc.), take it away, but let him try again in a few days.

Over time, he may accept the need for rules when playing. If he plays for a period of time without anger, give him a lot of praise. Since the games can be played at various levels and be restarted if he wishes, he has some control. With these games, he is free to fail without having to deal with another person winning and “lording it over him” which kids often do. Increase the complexity of the games as he matures. Avoid violent games, though.


More resources for parents of children and teens with High-Functioning Autism and Asperger's:

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

 ==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

 ==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

 ==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

 ==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book

==> Parenting System that Reduces Problematic Behavior in Children with Asperger's and High-Functioning Autism


COMMENTS:

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Anonymous said...Hey I'm new. Excellent forum. Just found it on Yahoo. tks 4 the Awesome community we have here :)

Hailey said...Both my husband and daughter are Aspies. We have discovered Family Pastimes board games. They are cooperative and involve a lot of problem solving. We take turns but we have the same goal. We have two of these games. Our favorite has been Granny's House. We have also played these with NTs and it always goes much better than any other board game.

Anonymous said...I had to stop playing board games with my son for awhile because he would get angry, have attitude and sometimes meltdown if he was losing a game. I find now that he is a little older (11) he seems to be able to manage his behavior a little better. Plus we enrolled him in a local FREINDS group where they teach them some social skills and play ALOT of games with them to help them learn how to win and lose gracefully.

Anonymous said...When my son finally was able to sit long enough to play a board game, one of the first things I taught him was how to be a gracious loser and a gracious winner. At the end of the game, the loser tells the winner, "Nice job!" (or something of the like.)

Anonymous said...We also had to wait it out. My son was not diagnosed till he was 8 1/2 and we were basically working on instinct. We picked out battles and stuck to our guns!! I was pretty firm with the house rules and if we were not having any fun then we weren't going to play. After his diagnosis it was easier for us to understand him and how to manage things, but we still kept up the same rules. He is now 11 and does very well with all sorts of games and sports. He is actually quite the card shark!! He still has his moments, but the difference is such a relief. I no longer feel I have to watch every move while holding my breath waiting for the next blowup! Phew!!!!

Anonymous said...our clinicians just keep having us play the game, our son has shown improvement. It was very unpleasant at first, but we hung in there. Last night the clinician pointed out to him that he was having fun, and he was not winning! It's been over a year of regularly playing games.

Anonymous said...Sometimes I find putting the 'rules' I a concept easier to understand, landing on a hotel is like being in a car park too long so you have to pay extra

 Anonymous said...Start with board games that have a lot less rules. Chutes and Ladders, Parcheesi, Uno...games that our Aspergers children can explain to others, rules and all.

Anonymous said...That's interesting. My aspie son (6 yrs) ever only wants to follow the rules as written, and gets really upset if his 3 year old sister makes up her own rules.

Anonymous said...We got our son to read the rules himself, and explained them to him, only problem ended up with an explosion at someone else if "he" felt someone else wasn't following the rules to the letter.

 Anonymous said...we just kept at it and explained it and kept playing and he made progress and then one day it was like everything clicked and he made a huge leap in progress... I was so surprised but now I know that the perseverance paid off and pays off Anonymous said... We still don't play board games.

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The Cognitive Traits of Kids on the Autism Spectrum

Your child on the autism spectrum is very bright in many areas - VERY BRIGHT!




Resources for parents of children and teens with Asperger's and High-Functioning Autism:
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Do You Think Your Child May Have ASD Level 1 [High-Functioning Autism]? Take This Quiz!

1. Does your child tend to focus on one subject to the exclusion of all others?

Yes - he latches onto one topic of interest and learns everything there is to know about it. He won't even think about something else!

No - he has some favorite topics, but displays a wide range of interests.

2. Does your child have difficulty interacting socially, particularly when it comes to nonverbal communication?

Yes - he/she seems unable to pick up cues in people's body language and vocal inflection.

No - he/she seems to be able to read the mood of a room pretty well, and understands what is and isn't appropriate in a conversation.

3. Does your child vary his or her vocal inflections, volume, or pitch?

No - he/she speaks in a monotone, regardless of the subject or the environment.

Yes - he/she shouts, whispers, laughs, whimpers, and more.

4. Does your child adhere to rigid, repetitive routines when it comes to everyday tasks?

Yes - everything has to be just so, from where we sit for breakfast to her bedtime routines.

No - she is pretty free and easy with her daily routine.

5. How are your child's motor skills developing?

A. He is a little behind other kids his age.

B. He is right where he should be.

6. Does your child understand idiomatic expressions (e.g., slang terms and figures of speech)?

No - she takes everything literally.

Yes - she doesn't know them right away, but she easily learns their meanings.

7. Does your child show an interest in playing with others?

Yes - he/she is always engaging with other kids.

No - sometimes it's as though he/she doesn't realize there are other kids present.

8. How is your child's IQ as compared to peers?




9. How old was your child when you first suspected he or she might have High-Functioning Autism?

A. Three years old or younger.

B. Older than three years.

10. Are there any cases of autism in your family history?

Yes

No

Scoring—

If at least 6 of your answers coincide with the answers below, your youngster may have High-Functioning Autism:

1. Yes
2. Yes
3. No
4. Yes
5. A.
6. No
7. No
8. A.
9. A.
10. Yes


Resources for parents of children and teens with Asperger's and High-Functioning Autism:
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Crucial Strategies for Parents of Challenging Kids on the Autism Spectrum

    Resources for parents of children and teens on the autism spectrum :   ==> How to Prevent Meltdowns and Tantrums in Children ...