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

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The DOs and DON'Ts After the Diagnosis

If you're like many moms and dads, your world changed when you first heard the word "Aspergers" or "high functioning autism" used to describe your youngster. And, like any good parent, your first inclination may be to learn all you can, find the best doctors, and take aggressive action to “fix” the problem. Before you launch yourself into action, though, you might want to get a quick overview of what you're letting yourself in for.

What should you do – and perhaps more importantly – what shouldn’t you do?

The DOs—

1. Do start with the basics. Literally dozens of treatments are available for Aspergers. Start with the basics (i.e., treatments that are easily available, funded, and appropriate). For most families, the basics include speech, occupational and physical therapy. For younger kids, home-based therapeutic programs are often available. Preschoolers and school-aged kids may be offered therapies through the school system.

2. Do add therapies slowly. If you decide your youngster is not getting all he needs, you may be tempted to jump into many different interventions at the same time. Of course, there are interventions that have an immediate impact for the better or worse, including some pharmaceuticals. Most treatments, however, require days, weeks or even months to really make a difference. By making changes slowly and observing your youngster's reactions, you can see what works and what doesn't.

3. Do avoid information overload. Thought you would “read up” on Aspergers in just a few days? Truth me, plenty of parents wind up spending unending weeks and months reading every website, blog and book, and attending every conference – but at the end, they're more confused than when they started. It's a good idea to inform yourself about the options, but one or two good books (I recommend “The Aspergers Comprehensive Handbook”) will give you a good gist without overloading you with 10,000 different opinions about everything from causes to treatments to adult life with Aspergers.

4. Do determine your youngster's needs. What exactly are your youngster's needs and deficits? Aspergers is a spectrum disorder, which means that your youngster may have many needs – or just a few. Does your youngster have speech delays? Sensory issues? Social deficits? By asking all of these questions of your doctor and your family and local support groups, you can start to create a picture of the services your youngster might need.

5. Do limit your interaction with other "Aspergers parents". Of course, it's a good idea to reach out and get to know other moms and dads who are in your situation, especially as you look into local therapists, schools, funding, etc. But be aware that parents with Aspergers kids are often passionate about the therapists and treatments they've selected. And it's easy to get overwhelmed as parents insist that their approach is the only approach. The truth is that no one knows the best approach for your Aspergers youngster. Every “Aspie” is different!

6. Do read and ask questions. A huge number of websites, books and resources are available about Aspergers. Select a few and dig in. Find a local support group or an online group and get involved (I recommend the “Parenting Aspergers Children - Support Group on Facebook”). Learn how other moms and dads have managed situations similar to yours.

7. Do remember that your youngster has not changed. Yesterday, your youngster was not labeled “Aspergers.” Today, he has been handed that label by a professional. But the label doesn't change your youngster or your love for him. All the good things you saw in your youngster yesterday are still there today. Part of your job will be to help him build on those strengths to compensate for the challenges of Aspergers.

8. Do remember to relax. Your youngster's diagnosis is important. But, so is your own life, your other kids, your health, and your finances. It's ok to take a break from time to time. Only when you're at your best can you hope to give your youngster all he needs to grow, develop and enjoy life!

9. Do use your Aspergers resources. Now that you know what your youngster needs, you need to determine whether those therapies are immediately available to you -- and if they are, how to put them in place. If you are in a rural area, you may have fewer options available than if you're in a city. Your medical insurance may cover only a fraction of the therapies you've discovered. Your school district may have specific options available. Once you know what's immediately available, you can set up a program that suits at least some of your needs.

The DON’Ts—

1. Don’t panic. For most moms and dads, a diagnosis of Aspergers is like a kick to the groin. You feel breathless and overwhelmed. Your world has been turned upside down. But remember that Aspergers, despite its many challenges, is not a dangerous condition. There's no need to panic! You and your entire family will benefit if you can think clearly and calmly.

2. Don't assume you always know best. Moms and dads are usually good at observing, describing and understanding their kids. Parents also, of course, need to advocate for their kids in school and elsewhere. But even parents don't always know what will work for their youngster, and often a educator or therapist will discover a talent, need, ability or challenge that surprises you. In short, parental instinct is wonderful, but it has its limits. And by insisting that you always know what your youngster needs, you may limit the options available to him.

3. Don't choose treatments based solely on the scientific research. In the best of all worlds, treatments are selected on the basis of multiple independent double-blind studies. If only that were possible in the Aspergers world! In fact, few treatments for Aspergers have been tested in this way -- and even those that have are questioned based on the quality of the research. That doesn't mean that none of the treatments are helpful. only that they haven't been fully researched. As a result, it's probably worth your time to look into several of those that seem most available and relevant to your youngster.

4. Don't choose treatments under pressure. As you enter the Aspergers world, you will meet educators, moms and dads, doctors and therapists who are absolutely certain they know what's best for your youngster. With all the best intentions in the world, they will absolutely insist that you take your youngster to Dr. X, or start your child on this treatment or that treatment. Take notes, and do your own research. If the treatment sounds too good to be true, costs too much money, or has no research behind it, you're under no obligation to say "yes" – nor are you under any obligation to report back to the insistent professional in your life.

5. Don't forget to breathe. Despite media hype to the contrary, it is extremely unusual for a youngster to be accurately diagnosed with Aspergers and then "recover" perfect normalcy. Much of the time, though, if your youngster is receiving solid one-on-one therapy, support, and love, he will develop skills and relationships – and continue to do so throughout life. In other words, treating Aspergers isn't about rushing to a cure. Instead, it's about finding a set of supports and a way of life that will work, with tweaks and adjustments, over time. No matter how quickly you move, and no matter how much money you spend, your Aspergers youngster is likely to remain Aspergers with all the ups and down that go with that diagnosis. So take time to enjoy your youngster, your spouse, your family, and your life. Get some fresh air. Remember that your youngster is not in danger of life or limb, and that he is still the same person you have always loved.

6. Don't obsess about Aspergers. It's easy to get obsessive. In fact, it's surprisingly easy for parents (especially moms) to focus almost entirely on their youngster's Aspergers. Unfortunately, obsession can create more problems than it solves. More than one marriage has fallen apart as the result of one spouse becoming too focused on Aspergers to attend to the marriage. Many households have gone broke in the attempt to provide every treatment, no matter how costly or obscure. And it's common for siblings of the Aspergers child to feel unfairly neglected by parents who seem to care only about supporting the “special needs child.”.

7. Don't overload your youngster or yourself. There is an understandable desire to see results from your efforts. And with so much emphasis on early intervention, moms and dads often want to see their kids "fixed" right away. But it's best to avoid the temptation to leap into multiple therapies with the hope that something will work. Not only will you and your youngster be exhausted, but it may be impossible to know what's really working. Remember that there really is no "window of opportunity," and your youngster will continue to learn and grow throughout his life.

8. Don't rush into action. The research says that early intervention is important. By the same token, however, Aspergers kids grow and develop over time just like everyone else. It's tempting to leap into as many therapeutic treatments as you can. But until you know what's best for your youngster, it's a good idea to take it slow.

9. Don't worry too much about the "whys" of Aspergers. There are over 24 theories of what causes Aspergers (e.g., cell phones, WiFi, pitocin, mercury poisoning, older fathers, genetics, artificial dyes and sweeteners, etc.). In short, unless your youngster is actually suffering from a physical problem (e.g., food allergy, lead poisoning, etc.), worrying about the causes of Aspergers will just drive you crazy.

The Aspergers Comprehensive Handbook

6 comments:

Anonymous said...

good advice. my 7 yr old son is awaiting diagnosis and i admit to being obsessive about it, i knew that way he behaved wasnt 'normal' and i have been the one pushing for him to get the diagnosis. maybe a bit of me wants to say to family "i told u so". school and psychologist agree im on the right track. i have read too much, have a very full head. i need to relax abit on this and show my teen daughter and husband some tlc. thanku for opening my eyes a bit :D

Anonymous said...

Best advice yet:) thankyou just what I needed to hear. My only concern is how do I parent my aspergers son now. The way I was parenting before his diagnosis seemed to lower anger but deepen the depression. Now I am trying other ways oh parenting the depression is easing but the anger is at extremes, feels like it is getting worse and I am trying to understand why and how to help. As a mother I just want to see my child happy and not in so much emotional pain.. I wish there was more advise on how to still know what is not acceptable behavior and what is just aspergers....

Anonymous said...

Thank You so much for this newsletter. It is exactly what I am going through.
These newsletters are so very helpful. Once again thank you.
Sincerely,
Alice

Anonymous said...

I am a desperate mother. I have an 8 year old son with aspergers. He is suffering horribly in school. He is physically violent, he is distracting to the other students, he REFUSES to do any work, and is emotionally unpredictable and verbally abusive. He has a 504 and we are working on an iep. The school wont stick to the 504 and wont do things ive asked like not putting him in the cafeteria, making him a schedule of what to expect for the day and provide punishment for the behaviors. He is on medicine and sees a counselor and psychiatrist. He is failing and his teacher just texted me saying she is "going to start ignoring him" im livid!! I have fought and fought for him and now i dont know what else to do. They come to me via calls, texts, and emails wanting advice and to "report" on his day. Yet, when i tell them what to try i get told "its too time consuming" or "pointless because he doesnt work anyway". I am now considering homeschool. Help!

Anonymous said...

Thank you so much for your newsletters. My six year old is currently awaiting diagnosis. I have known in my gut for years that he was very different. I questioned my instincts constantly as people said I just wasn't tough enough on him or he was "babied" too much. I can't tell you how much releif and reassurance this forum gives me. Autism is something I considered as a possibillity from the start, but my son was always so emotional and could be very loving and his verbal skills have always been way ahead of his peers. I was at my breaking point as a parent trying desperately to understand and feeling so alone. I read an article on Asperger's and the light finally came on. When I talked to the school they agreed and I thought why didn't someone just tell me about this sooner. I am discovering ways to work with my son and even without an "official" diagnosis, I am able to relate to him so much better. I am learning through your site, how to diffuse his tantrums, understand his depression and confusion, and teach him to cope with the things that trigger his behavior. I am already seeing progress for both of us. Thank you.

Carrie Cooling said...

Everyone in the world should read this. Well done.

I'd like to add, once you've worked things out and processed them, DON'T keep the diagnosis from your child.

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. Thus, the best treatment for Aspergers children and teens is, without a doubt, “social skills training.”

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.

Click here to read the full article…

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.

Click here to read the full article…

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."

Click here to read the full article…

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.

Click here to read the full article…

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. The hardest part is you feel like you’ll never actually get to know your child and how he/she views the world.

Click here to read the full article...

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