
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.
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:
• 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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As with all parents, but especially those parenting a child on the Autism spectrum, we will make mistakes and feel like we have not done enough but it's because we have an extraordinarily challenging lifestyle. A multi faceted role that no professional working with children would have or ever expect to have to deal with. They are either the therapist, the doctor , the teacher or the dietitian,but not all of these in one person, and before any big decisions have to be made they get to discuss them in a team meeting and make the decision as a team. And they don't have to live with the consequences long term. So our job as parents is far more complex and difficult, with very little support,and no training except the training we seek out for ourselves when we get time to do so. So we all are to be congratulated for even surviving such "impossible expectations " and such a difficult life style and for the progress we have already made. Also we should discard some of the less important and the non productive expectations we have of ourselves and of our children. We don't need that extra pressure and less pressure on us will benefit us and our children. I noticed with my children that when they were doing things they loved doing and were good at there were almost no behavior problems and they got more skilled at doing them. But when they did what others thought they should be doing, but had difficulty doing them, of course there were behavior problems and no improvement in that skill. Let's face it, they are specialists from a very early age. My children ended up in careers that are based on what they enjoyed doing and were good at as kids.And I don't have to motivate them to go to work - they love their work, and one of them lives independently in a shared apartment. Don't feel the need to explain to others your child's failure to do neuro typical things well. It's not their business. Dont feel the need to compare yourselves to those who have it easy. Just know that you are a more highly skilled, more patient, more creative and more giving parent than the "average" parent is, and find ways to make life more enjoyable for you and your children. If school is not working for your child and you can't find one that is accommodating to their strengths and weaknesses then consider home schooling so they can focus on what will probably lead to their career later on. Form a social group with other on the spectrum kids and co-operate to actively teach them social skills. They can't learn these skills with kids that either exclude them from play or taunt or bully them.My children found that once they were in tertiary education the other kids had grown up and no longer did childish things like bullying taunting and excluding those who are a little different.
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