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

Education and Counseling for Individuals Affected by Autism Spectrum Disorders

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Disappointment With The Diagnosis

Question

We recently received a diagnosis of Asperger Syndrome (or high-functioning autism) on our 7-year-old son. My husband is not doing so well with this recent news. Is there any way to lessen the blow to his disappointment?

Answer

To your husband:

Realize that you are not alone in this and that your feelings (which run the gamut from fear, to guilt, to anger, to depression, etc.) are just the symptoms of a broken heart. So go ahead and look at your grief. Observe your thoughts and feelings. Accept them and be kind to yourself about having them. It doesn’t help to pretend to be positive when underneath you may be lonely, afraid, or sad. You can grieve. You can complain. You can mourn. This helps you to go on, make the best of the situation, and enjoy life.

It is natural to wonder about what might have been. The longing for the “normal” youngster of your dreams - or a typical life for you and your family - may endure. You have to learn to live with that yearning, and you can do that, but you don’t have to lie to yourself about how hard this can be. It takes time to heal a confused and broken heart, and the difficulties that you must cope with everyday are nearly constant reminders and may trigger your grief over and over.

Try to accept yourself as you are—a kind and loving father doing your best with your Aspergers youngster who is undoubtedly doing his best under trying conditions. A perfectly lovely youngster with special needs can be very hard to be with because of his behavioral, social, or communication issues. But people often believe that when you love somebody, you love to be with them. When you don’t feel that and think you should, the guilt can be unbearable, and your heart aches. As you can accept yourself in a kind and compassionate way, your heart heals, and then the grief lightens. The sun comes out, and change is more likely.

Accepting our pain - and ourselves - leads to accepting and enjoying our Aspergers kids – and our family. This is the gateway to love and happiness. That deep connection that a father feels with a newborn, or a youngster’s first steps, or first words can be felt at any moment when we are truly aware and attuned to our Aspergers youngster. That deep connection is alive inside you. As you rekindle it, you can actually experience very deep happiness. That’s not to say that your life will be easy. But it can be happy and fulfilling.

The Aspergers Comprehensive Handbook

32 comments:

Anonymous said...

My husband went through the same thing and threatenend to divorce me if I followed through on appts and such...It took some time honestly....I started taking my husband to appointments with us so he could talk to the docs himself...It also helped my husband to realize it wasn't so bad by pointing out the good things of the diagnosis (the hyper focus on planes...and my husband is an AVID R/C plane fan and collector ;) ) try pointing out the positive things to your husband... Good luck!

Anonymous said...

It HAS to become more about the child and less about ego and himself. You can grieve for a little while but the bigger picture is the child and how to improve their quality of life. Period the end.. it is being a PARENT

Anonymous said...

I found a gentleman that was just graduating from college that had aspergers and we took him to lunch and he opened the floor for us to ask any and every question we wanted. To see someone successful really helped :)

Anonymous said...

I did all the appointments my husband I must admit was quite worried but stayed well back (HID) from everything...I admit I felt quite alone...he was brilliant thought when the results finaly came in and loves our son unconditionally and is brilliant with him and they are close or as close as can be...I found extended family were embarrased or dissapointed! We are who we are, live love be who you need to be, after all life would be soooo boring if we were all the same x

Anonymous said...

My ex husband (though we divorced for unrelated reasons) did not want my son in an aspergers setting at first. But the benefits of accommodating the child's needs first & foremost outweigh pride & ego.

Anonymous said...

Ok the other way about ! My partner can get thru anything apparently. He's coping loads and I'm not. I'm still blaming myself..oh and going for more shots tomorrow with ma gorgeous son who has Autisim ♥

Anonymous said...

I took it hard and was in disbelief. It takes time. I wanted the perfect child. One day I decided to read a book to learn about my daughter and it was like reading a book on myself. I realized she got the Asperger's from me and I'm doing ok. My extreme determination and obsessions with studying got me through college with honors!

Anonymous said...

Get him the book, "Not My Boy" by Rodney Pete. You just have to focus on what are your child's strengths and create great memories.

Anonymous said...

I think he may find it is a blessing in disguise...so many difficulties but your son will grow you and the world so much! Read my blog if you like www.empressartsfilm.com blog section 'Pokemum' many blessings on you all xx Amy

Anonymous said...

the first few appointments i had to do by myself as hubby didnt quite understand or believe what was staring him right in the face. It was only after the official diagnosis (and my breaking down) that he finaly started to except Aby "quirks...

Anonymous said...

My ex husband just thought our son was "just being a boy" and more discipline would solve the problem. He has come around some but I do everything for our son dr. wise. He took him to a couple appts. once and the therapist almost did a backflip the next time she saw me. He didn't make the best impression. I take whatever support I can get and keep giving him info as I get it and hope that one day he will be more involved.

Anonymous said...

I said it myself..."He's Quirky".....we all want "Perfect" but what is that really???? Healthy and happy?? he is at the moment but hasnt always been the case, the depression is awfull and I know we have all had experiece of this..........ours as well as theirs :-(

Anonymous said...

I have a house full of Asperger's sons and they are truly the most interesting people that not only I know, but that anyone in their sphere of influence knows. People tell me often how cool, interesting, clever, smart they are. Relax, sit back and ENJOY! Your son is a precious miracle! :)

Anonymous said...

You have to take the time to accept it and it's normal to go through a variety of emotions but there is beauty in Aspergers too, this coming from the mother of an Aspie that just turned 17. He too was diagnosed at 7, and the schools, etc kept saying he would never be good at school etc. He is currently in honors classes. What is the point of this? That sometimes parents focus on all the worse case scenarios of Aspergers when your child is more than just a diagnosis. And some of the things you fear may never even happen. Therapies have come far, look into social skills groups since he is still young. Trust in learning all you can and try not to focus on all the negatives. It's a label in the end, and each child we have is an individual just as we are. Sometimes it's hard for parents to move their ego out of the way and let their child be what they're meant to. It's a long road with pitfalls but also, there are so many experiences you get to enjoy as a parent of such a child that others never will. There is beauty and joy! And you know something, you learn not to take yourself so seriously too. But talking to someone may help him deal with his emotions first. No shame in being scared or hurt at first. No parent is an instant expert on any child, and it takes time to learn.

Anonymous said...

PS and I agree with person down further! They are the most fascinating true individuals in the world.

Anonymous said...

We got my son's diagnosis the day before we were going on vacation one summer - and for the first five days we were both actually very sad, and unable to really shake it. Then, it occurred to me: nothing had changed. He was still the same boy we knew and loved; all of his quirks and qualities were endearing to us and now we just knew why, and we also could work on those things that were difficult for him. And, that realization really helped us. He is who he has always been, our amazing, interesting, lovely son. We have incredibly challenging moments, but I think most parents do, in one way or another - and many worse than ours. Hope that helps!

Shari said...

My husband's older brother has cerebral palsy and is non-verbal, so my husband had already learned coping techniques for handling the grief associated with having a loved one who does not typically develop or behave. It's okay to focus on yourself and your own feelings about a diagnosis for a loved one, at least for awhile. Once you come to terms with your own feelings, you're better prepared for any unique challenges that lie ahead!

Anonymous said...

My DH thought "well, DS is just like me and I'm FINE"....... It took some soul searching on the part of my husband to see how similar they were and that fine didn't cover it. :-)

Anonymous said...

My daughter is currently being tested and is showing strongly as Aspergers. I look at it this way. she is still the same wonderful person we love, the diagnosis just helps us understand her better and is a tool to help her learn in a way the helps her reach her full potential. a diagnosis doen't change the child, tthere for it shouldn't change the parent. the more we understand, the better we can support our children

Anonymous said...

In the beginning, it can hit everyone hard, but in time everyone comes around too. My husband's family has a history of autism and to find out that our son had Asperger's was hard on him. He blamed himself and his family history. My mom and dad didn't understand the label and didn't think that we should use it. I have several friends with kids on the spectrum and the more that we were around them, the more I realized how lucky we were and just kept telling everyone that. Now, there are days that are rough, (don't get me wrong and dealing with the number people that want me to "fix him" by waving a magic wand are too many to count) but overall, we have all come to terms with the diagnosis and are learning to love living with an Aspie. There isn't a day that goes by that my son doesn't show me a new way to look at the world and a new way to solve a problem. I even see me and my quirks in him, so I know that in the end we will all be OK and so will you and your husband. Good luck!

Anonymous said...

It has to be about the child! We don't know the causes of Autism/Asberger's. There is no room for the blame game. There is no room for ego.
It has to be about the child. Learning how to communicate effectively for quality of life for everyone involved!

Anonymous said...

I didnt have time to worry, I knew the day my third son was born that something was different,it was followed by his first year of life being in dark quiet rooms, to tantrums as a toddler if we went in the car or to stores,I was living in a prison...at two I had a therapist come to our home to help me and my husband, who at the time knew something also was wrong but didnt want anyone to tell him how to handle it..when my son was four I had enough of the isolation,and chose to get help from Child Protective Services,my husband was mad, but I didnt care, he wasnt helping me...CPS made sure I had help, and training,and got the doctors I needed and support, they became my HUSband....now my son is 12...I am single mom of four boys, and my son is in a special school...once again I am dealing with him alone..Some men just dont never get it!Honestly, I think my husband has some of the same issues...and chooses to self medicate,but I do not care..he is a grown ass man, and it's time to grow up...my 12 year old is more grown up than my husband is! I am very proud of him!

Anonymous said...

A diagnosis of Asperger's is no different than that need for glasses for a child in our eyes. It is a part of who our son is - it is what defines him. Without his asperger's he likely wouldn't be in the Gifted and Talented classes. Without his asperger's he wouldn't see the world in a way we don't and open our eyes to it. He might be a better at sports without AS and he might be 'cooler' without AS, but he wouldn't be the kid we love today if he was without AS. We don't see it as a disability for him. We see it as just part of his personality. If you see beyond the diagnosis and see all it gives him, you will see a totally exciting and new world for him. The dreams for our child are not gone, they are just different than what we expected. This is the same if we have a neuro typcial child who didn't want to do the things we think they should - play hockey, play football, dress cool, etc. Our job is to support their wishes, not ours. This isn't a death sentence. Just a stepping stone to really understanding our children. I wish you luck.

Anonymous said...

Of course there is! Because in 1 year the government is doing away with the Diagnosis of Aspergers so your problems will be all solved!! ;) (Sarcasm intended. I'm still bitter about this whole thing.)
13 hours ago · Like

Anonymous said...

My husband had the same feeling when our son was diagnosed. He kinda felt like he had done something wrong and had no idea what to do. Tell him that it's not his fault and it's normal to feel this way and then maybe help him to find another dad who has an aspie, this help my husband a ton. Also let him know that it doesn't change who his son is or how much they love each other all it does is makes it easier to understand why things are different for him than for other little boys. Hope all goes well!

Anonymous said...

well, your child is still your child and still the same child from before, the only thing that's changed is the diagnosis status. accept your child for who he/she is.

Anonymous said...

All I can write is your child is still the same as before.( you love them). You know for sure there is something going on. The hassel is now you need to do what is needed to set them on the correct course. Dealing with more doctors is a pain but you need the input & direction on how to help. There will be ups & downs, but just do your best. Life goes on. You or other don't have to like it but deal with it because the child needs strong parents. P.S It helps to find as much info as possible to help understand all thats going on. Aspergers can be a handful at times.

Anonymous said...

i knew something was wrong when my twins were 2-3 yrs old but my 1 boy wasnt diagnosed until he went to kindergarten...Its alot to deal with i agree but as Anna said he is still your child.

Anonymous said...

I say bring him to the local children's hospital and let him see the smile from a child that lives off a respirator.. Eats through a tube.... Is nonverbal ... Will never walk... Has endured multiple surgeries to just be here today...

Anonymous said...

Look at is as a blessing. You have answers. When LB was first diagnosed someone gave me this and it was so true.

Anonymous said...

Yes the asperger's can be a pain.I think getting him out and involved in different activities will get him in social situatiin.that has to b important thing to be accepted. We were lucky in that dept. Everybody loves jacksom, teachers, faculty and students. Yes blessed I guess.As far as the feelings your going through, well dear that takes time. we are here for you for sure. I'm Tia and It was so hard for me too, the shock.
19 hours ago · Like

Anonymous said...

Look on the bright side. You know what it is and now you can find out how to deal with it in a timely fashion. The sooner you know the truth the more fairly you can treat your child.

Our son, though not formally diagnosed with Aspergers, exhibits many of the signs of the condition. When he was small we didn't know what Aspergers or Autism were. All we knew is that he was not succeeding in school or in many social situations. We chalked it up to simple misbehaving and even rebellion and reacted against it. Now he is 23 years old and we are finally learning about the subject and deeply regretting our uneducated behavior toward him.

Fortunately he is resiliant and has found ways to get ahead of his own limitations ... and ours. But I wish we had had the knowledge of what kind of child we had 23 years ago.

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.

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

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