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Marital Stress and Parenting Kids on the Autism Spectrum: 20 Tips for Spouses

Becoming a parent of an Aspergers or high functioning autistic (HFA) youngster changes your identity forever. There is a balancing act between (a) caring for the needs of your “special needs” youngster and (b) putting time and effort into the maintenance and growth of yourself and your marriage.

The kind of stress that raising a "special needs" youngster often entails can affect relationships at their weakest points. According to the U.S. Census Bureau, 47% of first marriages fail and 57% of all marriages end in divorce. Although the findings are inconsistent, there is general consensus among professionals that, while the divorce rates are comparable, there appears to be more reported marital distress among families of kids with special needs.

Some areas that will be impacted in your marriage are:
  • Finances
  • Future planning
  • Parenting style
  • Recreation
  • Self-esteem
  • Sexuality
  • Social life
  • Spirituality

Moms and dads of kids on the autism spectrum often face a life very different from what they had originally imagined. The needs of these young people are often complex and illusive. Searching to find the cause of the youngster’s developmental problems - and the best treatment for it - can be a long hard journey. When the diagnosis is made, powerful emotions may surface - and may put the marriage on trial.

How can couples understand each other in the wake of such a challenge?

Challenging life events can serve as catalysts for change. Some families disintegrate while others thrive despite their hardships. Parents can emerge from crisis revitalized and enriched. Hope for relationships really can spring from the crises parents experience when their youngster has an Autism Spectrum Disorder.

If you and your spouse are parenting an Aspergers or HFA youngster, here are some suggestions to help your relationship:

1. A major key to coping with stress and change is to try to accept it and to regularly express your feelings and thoughts to one another. Of course a diagnosis does not destroy your marriage – but it will shift the balance in your marital relationship. You and your partner will be adjusting in different ways, and often at a difference pace. Sometimes your partner will want to talk about the situation, and then other times may need time alone.

2. Allow friends and family to provide extra support, or seek professional help if your marriage is in jeopardy.



3. Although your marriage is forever changed, the change doesn't have to be negative. Many partners share their sense of joy, awe and thankfulness as they speak about their special youngster. Because they were able to communicate and openly share with one another, their marriage is also enriched.

4. Be patient with one another.

5. Celebrate each milestone.

6. When an individual is in pain, he/she may withdraw or become frustrated and angry. It’s hard to talk about something we have no power to change or fix. At times the reactions of partners can become polarized or opposite (e.g., one partner may notice problems in the Aspergers or HFA youngster and tend to worry and feel negative, while the other partner holds hope and optimism that - in time - everything will be fine). Try to consider all of your feelings toward your youngster - both positive and negative - and discuss issues in ways that will help both of you feel understood and find solutions to problems.

7. Develop a strong family support network.

8. Look at what professionals believe make a strong family. The list includes communication, listening, affirming, respecting, trusting, having fun and a sense of humor, and knowing when to seek help. These strengths need to be worked on in a couple's marriage relationship, too.

9. When possible share the responsibilities at home by working together on chores, childcare, and education. It is helpful when partners both work to learn about their youngster’s disorder, prepare for and attend IEP meetings, etc. Get involved in the special needs community if you can. There’s so much to manage everyday that reaching out to your spouse, relatives or friends can help lessen the burden.

10. Reaffirm your marriage commitment to one another.

11. Realize that children on the spectrum will disrupt the course of your marriage now and then. It simply comes with the territory, but can be easily worked out.

12. Remember to take care of your relationship. Make time for the two of you to be alone every day – even if it is a walk around the block. Some time away together is important also.

13. Sometimes a mental health professional can be helpful to you in understanding the needs of Aspergers and HFA kids, yourself, and your marriage. Some parents are reluctant to take this step, but if it becomes hard to function from day to day, this kind of help may be in order. Just as you would consult more than one specialist for your youngster if necessary, do likewise for yourself. If your spouse is too discouraged, then start by yourself. Sometimes a change in one spouse changes the chemistry of the situation for the better.

14. Sort out what is important and what isn't important to the two of you. Really look at your values and your hopes and dreams for your life together. Discuss what you can – and cannot - accomplish.

15. Your youngster has a condition that may require lots of care and supervision in the early years. In the struggle to advocate for your kid’s needs, your own needs as a parent and as spouse may get lost. Many spouses stop focusing on their marriage, but this never helps. As hard as it may sound at first, start to think about taking care of yourself and adding some fun and enjoyment into your life, even though it can take a long time for this to feel okay.

16. Take time to pursue the things that renew you as individuals.

17. Talk openly about problems and issues when they occur.

18. Together, learn all you can about your youngster's disorder.

19. Family life can be a test of love and resilience, so taking good notes and working to understand each other's wants and needs are vital to the success and survival of an intimate relationship. Life has veered-off a bit from what you had expected it to be. Try not to blame each other for the situation. It takes time to sort this stuff out. Be kind to yourself and each other when the going gets rough.

20. Prayer and meditation are useful tools for many parents of special needs children.


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

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

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

==> Highly Effective Research-Based Parenting Strategies for Children with Asperger's and High-Functioning Autism


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How can I get my spouse more involved with our autistic daughter?

Question

How can I get my spouse more involved with our daughter (high functioning)? He is generally supportive, but doesn’t seem willing to learn anything about autism or get involved with our daughter’s treatment. I’m starting to wonder whether he’s ever going to get to know our daughter at all!

Answer

Unfortunately, you speak for many mothers in your situation. There is a sense of loneliness that many moms experience after the diagnosis. It seems to come from the general trend that males have a hard time facing things they can’t fix. They feel powerless and inept when they can’t simply work harder to fix their youngster’s “disability.” Your spouse probably feels more powerless than you do.

The dynamic of a family with a high-functioning autistic (HFA) youngster tends to follow a pattern where the dad focuses on the long-term problems (e.g., financial burdens), while the mom responds more emotionally as she faces the burdens of the daily care of the youngster. By being less involved in the daily interaction with their kids, dads tend to have a somewhat longer period of denial about the disorder and its implications. When males do express their feelings, they tend to show anger or frustration.



To make matters worse, many fathers of HFA children have undiagnosed autism themselves. And some wives report that such husbands tend to be hard driven, inexpressive, pragmatic individuals, devoid of strong emotions or the capacity to nurture, always more at home with work than with their families.

Recently, a mom of an autistic child (who I have been counseling) told her spouse that if he really loved her the way he said, then he would come to a few counseling sessions with her. She needed that from him and insisted. He came and was glad he did. He probably thought about autism as much as she did, but kept it all inside. He was very expressive about what a great job she was doing, but simultaneously very discouraged about his child’s progress.

One dad told me he never read anything about HFA or went to any appointments until his wife had to go out of town for a weekend for a funeral. Left home with their "special needs" youngster, he came to a realization of what his wife’s daily life was really like, and he began to take a different attitude. He began to learn about HFA and get involved in his child’s treatment.

Everyone deals with parenting a child with special needs differently, and this difference may be even more pronounced in a family with an HFA youngster. It is very typical for one parent to become immersed in the world of autism after the diagnosis, while the other parent takes a back seat. Your spouse’s supportiveness is a positive step, and not getting as involved at this stage does not necessarily mean an unwillingness to do so. He must come to terms with - and get to know - your daughter in his own way, and at his own pace.

Encouragement and support for your spouse to get more involved in your daughter’s life need not include any accusations at all. Keep your spouse informed about your daughter and what you learn about her and her disorder. Leave the information around for your spouse to pick up and take a look at in his own time. Continue to encourage positive family interaction as much as possible.

You may feel somewhat resentful at times that you are the one doing all of the work here. You may be more able than your spouse to deal with your daughter’s diagnosis and all of the planning and involvement that goes along with it. If your spouse has a particularly hard time accepting your daughter’s diagnosis, then some counseling may be helpful. But, first try to gently nudge him along and to talk to him about your feelings and his with regard to your daughter. Perhaps things can begin to move forward from there. You can certainly let your spouse know how his seeming lack of involvement or interest makes you feel (but no accusations).

Fathers tend to be slower in this aspect of parenting a "special needs" youngster, so don’t get discouraged. Let your spouse know that you appreciate him, and let him know what you need.


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

==> Videos for Parents of Children and Teens with ASD
 
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COMMENTS:

Anonymous said...
I don't think it's not having an interest my partner is the same I think it's more to do with them finding it hard to understand!

Anonymous said...
My husband had the same problem and I thought the same things most people do BUT after i finally got him to be totally honest he did understand but was scared that because of her Aspergers she would not reciprocate his emotions. And as you well know men don't admit their fears easily. After he started participating in her treatment they grew very close. In fact she tells him her "secrets" now lol she is 11

Anonymous said...
That's my husband he knows nothing about it and all I ever say is start reading about it and he does not understand our daughter and her issues so I deal with it all alone . His answer is always just punish her ... Like that would work ... He also says he's never had to deal with a child with "mental " issues .... I think sometimes that makes him feel like less than a man or something because our daughter is like that

Unknown said...
I read this post on a day where our differences in dealing with our son came up once again. Mostly, we don't talk about it, and I feel resentment because while I try to have positive interactions with our son way more often than negative ones, my husband seems to always be correcting or judging or wishing he was different. We interviewed a therapist today and I brought up that I would like family therapy. I keep mentioning to my husband how much it affects our relationship when he doesn't connect in positive ways with our son. It doesn't ever seem to change anything long-term. He sits at home with his computer or his papers and spends so much more time working even when he is at home than he does giving attention to our son (unless it is to scold him).
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Bullying: How Parents Can Take Legal Action To Get It Stopped

Question

I have an 8-year-old Asperger son. How do you handle when he is bullied and the school administration seems to give you the brush off. My son act-outs when he is under stress or in an unstructured situation. In all of those instances, he gets the detentions. When I call in about his being bullied, nothing is done, or the bully gets spoken to in their classroom, as a sort of blanket discussion. How do I handle this?

Answer

Bullying is abusive behavior by one or more students against a victim or victims. It can be a direct attack (e.g., teasing, taunting, threatening, stalking, name-calling, hitting, making threats, coercion, stealing, etc.), or something more subtle (e.g., malicious gossiping, spreading rumors, intentional exclusion, etc.). Both result in victims becoming socially rejected and isolated.

Unfortunately, many parents have attempted to reconcile such victimization by going to school officials and requesting that something be done – only to be told that either (a) the bullying is not, in fact, occurring at all, or (b) the school is - or will - address the issue.

As one Aspergers student stated:

“I AM such a child with Asperger's Syndrome. Bullying hurts so badly. In my first secondary school, I was being discriminated by the teachers, especially the Head of Year. Whenever I was being bullied, they turned a blind eye, whereas when I fought back, I was suspended and the bullies weren't even punished. I do not want to see the hallway where I took those internal suspensions. I later quit that school. Just because we are "disabled", as the government puts it, does NOT mean we are brain-dead and do not have feelings. We actually feel feelings more deeply than most people, only we cannot describe them properly. More than 3 times, I have contemplated suicide because I have been bullied and cannot express my feelings. If someone bullies someone else into suicide, is that not murder? How many more times must we, the "disabled" community, be tortured to the end of our tether before people FINALLY understand that we are still people?”

Often times, after months or years of getting no results from school officials, many parents of Aspergers (high-functioning autistic) students have to either (a) move their child to a different school, or (b) quit work and stay at home in order to home-school their child.

So, what can parents do who are at their wits-end in trying to get bullying stopped – once and for all?!  Here’s how to take the bully by the horns and get school officials to take you seriously:

1. Document all aspects of the bullying incidents involving your Aspergers youngster. Keep meticulous notes and records, just as if you are the attorney representing your youngster. Ask your Aspie to do the same. If you want to make it a fun exercise, grab a long-handled spoon and pronounce on your Aspie, "I now dub you a special junior attorney." Advocate for – and empower – your Aspergers child. Who knows, he may even become an attorney some day, or find a profession that utilizes such skills.

2. Conduct an interview with your Aspergers youngster, and then write down a summary of the bullying incidents in bullet point fashion.

3. If there were witnesses to any of the bullying incidents, get their statements – and signatures on those statements (do this in front of a grown-up if the witnesses are minors). Do not forget to add dates, names, times, and all the “who, what, when, where and why” information you can find.

4. Write down any comments made by teachers or other school officials. These written notes may not seem like much at the time, but later, they may be a deciding point for justice in your Aspie’s favor. In addition, these records may aid in procedural changes that could dramatically reduce bullying in your school.

5. The parent must prove that the school district actually knew about the bullying offenses, but refused to take action to correct it. So, be sure to notify your child’s school district. The first element that must be satisfied to win a peer-harassment complaint is to give the school district "actual notice" of the incidents. Address the notification to a specific person and date the letter. The letter should be sent via certified mail, UPS or Fed Ex to the District Superintendent with courtesy copies (CC) to your child’s teacher(s) and principal.

6. In the notification, request an Acknowledgement Letter to Confirm Receipt of Notification. An acknowledgement letter is written to confirm receipt of documents in the office this notification is used in official purposes. The authority in the office where you have submitted your notification writes this letter to let you know that the notification has reached the right place. The letter should convey that your notification has been received and how much time will be required to complete the formalities involved.

7. Be sure to write the letter to a person who has the authority to investigate - and the authority to correct - the wrong.


8. State the past - or continuing - discriminatory activity against your youngster. If you have not been documenting the history of the bullying incidents, now is a good time to start.

9. State that the school district has control over both the physical site of the discrimination and over any school personnel involved. You may want to give examples of changes the district has recently made to the school facilities, curriculum or schedule – all of which demonstrate control.

10. Explain that the discrimination was not a single act – but was severe and pervasive.

11. Tell how the discrimination excluded your Aspergers youngster from participation in certain school activities, or denied his/her benefits to which other students enjoyed. One of the elements you must prove to prevail on a peer-harassment claim is that the harassment was "so severe, pervasive, and objectively offensive that it can be said to deprive the victims of access to the educational opportunities or benefits provided by the school."

12. Explain what you would like the school to do. Suggest what the school may do to stop the discrimination or to fix the harm the discrimination has done to your youngster.

13. Ask for a copy of a school district grievance procedure under Section 504 (even if your youngster has an IEP under IDEA). Not having this information may result in continued discrimination.

14. State that you expect investigation and/or effective corrective action. Should the individual receiving the letter fail to investigate, or does not take effective corrective action, you may claim that the district showed deliberate indifference to the discrimination.

15. Add a date that you expect to hear back from the district in regards to your notification.

16. Lastly, you may wish to include the following "Note to School Officials" along with your notification letter (copy and paste into a Word document, then print-out and add as an attachment):

Note to School Officials—

The school district is a recipient of federal financial assistance. Public schools depend on the continued flow of federal funds. This depends, in part, on their compliance with Federal Laws.

Harassing conduct may take many forms, including verbal acts and name‐calling, graphic and written statements (which may include use of cell phones or the Internet), or other conduct that may be physically threatening, harmful, or humiliating. Harassment does not have to include (a) intent to harm, (b) be directed at a specific target, or (c) involve repeated incidents. Harassment creates a hostile environment when the conduct is sufficiently severe, pervasive, or persistent so as to interfere with or limit a student’s ability to participate in or benefit from the services, activities, or opportunities offered by a school. When such harassment is based on race, color, national origin, sex, or disability, it violates the civil rights laws that OCR enforces.

A school is responsible for addressing harassment incidents about which it knows or reasonably should have known. In some situations, harassment may be in plain sight, widespread, or well‐known to students and staff, such as harassment occurring in hallways, during academic or physical education classes, during extra-curricular activities, at recess, on a school bus, or through graffiti in public areas. In these cases, the obvious signs of the harassment are sufficient to put the school on notice.

In other situations, the school may become aware of misconduct, triggering an investigation that could lead to the discovery of additional incidents that, taken together, may constitute a hostile environment. In all cases, schools should have well‐publicized policies prohibiting harassment and procedures for reporting and resolving 10complaints that will alert the school to incidents of harassment.

When responding to harassment, a school must take immediate and appropriate action to investigate or otherwise determine what occurred. The specific steps in a school’s investigation will vary depending upon:
  • the age of the student(s) involved
  • the nature of the allegation
  • the size and administrative structure of the school
  • the source of the complaint
  • and other factors

In all cases, however, the inquiry should be prompt, thorough, and impartial.

If an investigation reveals that discriminatory harassment has occurred, a school must take prompt and effective steps reasonably calculated to end the harassment, eliminate any hostile environment and its effects, and prevent the harassment from recurring. These duties are a school’s responsibility even if the misconduct also is covered by an anti‐bullying policy, and regardless of whether a student has complained, asked the school to take action, or identified the harassment as a form of discrimination.



COMMENTS:

 •    Anonymous said... We are having trouble in this area too!my son is only just being diagnosed aspergers at 12!he finds it impossible to walk away which also causes trouble!!he is suffering badly with anxiety and is feeling very sad and alone as he says he is uncool to be seen with even by kids who quiet like him.so sad.
•    Anonymous said... I only just realised this was happening to my aspie son (aged 12). He's in year 7 at a new school with no friends. He was being stirred by 3 boys from his class. I spoke to his school & they were fantastic in speaking to the other boys & i'm hoping thats the end of it. My only mistake was approaching one of the mothers i knew of those boys, these children are ignorant because their parents are ignorant. She told me "she felt sorry for her child because he was forced to sit next to & be friend my son". Unfortunately we have no control as to the lack of understanding & compassion with these people, what we can do is help, support & do our best to teach our kids the social cues they just dont get. My advise work with the schools, the only person our kids have got to fight their battles is us & they deserve it. They deserve to be happy.
•    Anonymous said... I had trouble with this because my Aspergers child didn't like anyone around him, had behavior problems, and we dealt with a lot of anger with him because he was so easily frustrated. We found out when he was 5 and now is 13. He still has a hard time making friends but has been called the bully and Has been bullied and had to go on an anti depressant because of how sad he was feeling. It can be difficult. Just Advocate for your child and don't let them push you around.

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Aspergers Children and Intensity-Seeking: 2-Minute Tip

This Week's 2-Minute Tip: Aspergers Children and Intensity-Seeking



==> My Aspergers Child: Preventing Meltdowns and Tantrums in Aspergers Children
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