HELP FOR PARENTS OF CHILDREN WITH ASPERGER'S & HIGH-FUNCTIONING AUTISM

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Feeling Like a “Bad” Parent of a Child on the Autism Spectrum

“My son Noah age 6 has been diagnosed with autism (high functioning). He has always been difficult at home, and now I am getting repeated bad reports from school. 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) – also referred to as Asperger’s (AS) – 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 or AS 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 or AS 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. 

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


COMMENTS:

•    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..  😭 😭 😭
•    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.

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My child has been rejected by his peers, ridiculed and bullied !!!

Social rejection has devastating effects in many areas of functioning. Because the Aspergers 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.

Click here to read the full article…

How to Prevent Meltdowns in Aspergers Children

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 child is totally out-of-control. When it ends, both you and the Asperger’s 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.

Click here for the full article...

Parenting Defiant Aspergers Teens

Although Aspergers is at the milder end of the autism spectrum, the challenges parents face when disciplining a teenager with Aspergers are more difficult than they would be with an average teen. Complicated by defiant behavior, the Aspergers teen is at risk for even greater difficulties on multiple levels – unless the parents’ disciplinary techniques are tailored to their child's special needs.

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Aspergers Children “Block-Out” Their Emotions

Parenting children with Aspergers and HFA can be a daunting task. In layman’s terms, Aspergers is a developmental disability that affects the way children develop and understand the world around them, and is directly linked to their senses and sensory processing. This means they often use certain behaviors to block out their emotions or response to pain.

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Older Teens and Young Adult Children With Aspergers Still Living At Home

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 Aspergers 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."

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Living with an Aspergers Spouse/Partner

Research reveals that the divorce rate for people with Aspergers is around 80%. Why so high!? The answer may be found in how the symptoms of Aspergers affect intimate relationships. People with Aspergers often find it difficult to understand others and express themselves. They may seem to lose interest in people over time, appear aloof, and are often mistaken as self-centered, vain individuals.

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Online Parent Coaching for Parents of Asperger's Children

If you’re the parent of a child with Aspergers or High-Functioning Autism, you know it can be a struggle from time to time. Your child may be experiencing: obsessive routines; problems coping in social situations; intense tantrums and meltdowns; over-sensitivity to sounds, tastes, smells and sights; preoccupation with one subject of interest; and being overwhelmed by even the smallest of changes.

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Unraveling The Mystery Behind Asperger's and High-Functioning Autism

Parents, teachers, and the general public have a lot of misconceptions of Asperger's and High-Functioning Autism. Many myths abound, and the lack of knowledge is both disturbing and harmful to kids and teens who struggle with the disorder.

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Parenting Children and Teens with High-Functioning Autism

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.

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to read the full article...

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My Aspergers Child - Syndicated Content