It's Aspergers Syndrome! How do you share the news?

Finding out that one’s child has been diagnosed with Aspergers or High-Functioning Autism can be distressing for some parents. Moms and dads may naturally feel guilty even though there isn’t anything yet known that could have prevented the disorder. Through all of this comes the need for telling others about the syndrome and how it affects the child.

If you are faced with having to tell those around you that your child has Aspergers or HFA, the first thing you want to do is understand and read about the condition so that you can answer questions appropriately and truly be an advocate for your child. 

Comments

Anonymous said…
Sharing the news really depends on alot of different criteria.. how old is the child? who will share the news? what about after? supports? I shared the information with my son who was five.. I had several books that I read to him each night about how special he was and those books made him feel good and accept himself. I told him we all have issues - inside and outside and he is getting help when he is young to over come the challenges and be whoever he wants to be when he grows up. My son has always accepted the diagnosis of Asperger syndrome and how it affects him personnally. He has amazing gifts and talents too! He has become an advocate for autism over the years, speaking one on one to people and in front of Senator Clinton and hundreds!
May 7, 2011 at 10:25 AM
Anonymous said…
Cancer is a disease, Aspergers is not a disease,it's an exceptionality. My second Daughter is Aspergers. I guess having my oldest having type 1 juvenile diabetes and my youngest having Fetal alcohol syndrome puts Apergers into perspective for me. Aspergers is a blessing and having it diagnosed is also a blessing. Most kids don't come with a manual but an Aspie comes with some generalization as to what to expcext, how to help, and alot of information to gain insights and understanding. My expectations for my Aspie daughter hasn't changed, we still expect her to participate with the family, do her school work and keep her room clean and be nice to her sisters. What HAS changed is how we support her in completing tasks, mediate conflict with peers and siblings and how we balance her school courses and we now understand her currency. (her iPod and trips to the library LOL). The job of the parent is to advocate for our children... I don't feel it necessary to explain to the world that my daughter has Aspergers out side of explaining how to support and understand her. The internet is out there with tons of information and I expect those involved with her to educate themselves. Every person with Aspergers is different and I won't allow anyone to view my daughter has handicapped or disabled..around our home we use the terms "neuro-typical" and "neuro-exceptional" it really helps my daughter to celebrate her differences and it helps others see that I raise all three of my special needs children according to their individual needs. I have an "IPP- Individual Parenting Plan" for each of my children geared to what supports they need, and according to their aspirations, goals and abilities and limitations. I won't allow myself to wallow in self pity for what I would like for my child, but I just enjoy and celebrate my Aspie for the wonderfully funny and creative person she is. After almost loosing my diabetic child to 4 bouts of DKA ( diabetic Ketoacidosis) in 5 months, near kidney failure and having to send same diabetic child to a medical clinic in another country for 6 months to save her life and living for 5 years with the reality that my sick child would likely die and having to plan that child's funeral has given me this perspective, my child will not die of Aspergers but she will retain that magic quality of childhood and wonder all the days of her life and bless those around her because of it. I am thankful my child only has Aspergers, she is healthy and my world is magical because of how she views it. Because her Aspergers I get to relive parts of childhood again, be it the excitement of a parade or the impulse to ride a carousel. (My Aspie is always the first to support my impulsive urges.) We skip and sing in the park, tell knock-knock jokes, and quote lines from out favourite movies at each other all day long. She is 14 and not embarrassed by a hug from mom in public like her 16 year old sister is. Living with an Aspie has it challenges, but it's me who needs to change not her. She is perfect the way she is!
May 15, 2012 at 8:22 AM
Anonymous said…
Well first off do not think of it as a disease. It is a part of your child as much as his eye color. I had a mix of emotions as well. There was relief because we finally had a name mixed with fear, sadness and stress. We made diet changes and other changes so we had to tell them but we just said this is what he has and this is how you can help make things easier on him when he's with you. I have to be honest though some people might not think your child has Aspergers. I went through that. Just keep your head up and show everyone else he is still the same boy they know and love.
May 15, 2012 at 8:23 AM
Anonymous said…
its not a disease, its a "difference" and its not all bad honest x
May 15, 2012 at 8:23 AM
Anonymous said…
First, its not a "disease" its a neurological disorder. Second, its nothing to be ashamed of and if you feel that way, you will project that out to others and they will think its something to be ashamed of (and you do not want that). Finally, YES! Of course you need to tell friends and family so that they know what to expect from your son, how to be supportive of him (and you), and by telling them is also you educating others about Autism Spectrum Disorders. Love and hugs, and good luck ♥
May 15, 2012 at 8:23 AM
Anonymous said…
Having this disorder does not change the child. It is the same child that you and you family have always loved... Have high hopes and get the right support educationally to achieve the best of your child's ability...
May 15, 2012 at 8:24 AM
Anonymous said…
I don't understand why some people think Asperger's is so bad. I wouldn't classify it as a disability and definitely not a disease. I have Asperger's, a full time job, 3 kids (2 are also on the Autism spectrum), married for 11 years, and am going to school full time for my RN. We can live pretty "normal" lives.
May 15, 2012 at 8:24 AM
Anonymous said…
It's not a disease. It's a blessing.
May 15, 2012 at 8:24 AM
Anonymous said…
how good you have found out why your child is different,i waited till mine were grown up,so step in right direction,now you can read as much as you can on the subject,hopefull your family can now support you in this,these people who object may be on spectrum them self,in our family its genetic and lots of the older ones are very aspergers but in denial and not diagnosed,and its a disorder ,not disease,by the was most of our aspergers family have done well,and have gone on to have a career,so dont worry too much,join local carers support group if you can,
May 15, 2012 at 8:24 AM
Anonymous said…
If you people read the article you'd see that they classify it as a disorder and not a disease....the word "disease" is quoted from the woman asking the question.
May 15, 2012 at 8:25 AM
Anonymous said…
Celebrate the things that make your child special. They are truly no different than any other child. We are all different. An Aspie child behaves differently. Ask an Aspie child and you'll find that they see themselves as the norm and to them others are wired differently. It's all about perspective.
May 15, 2012 at 8:26 AM
Anonymous said…
It is not a disease, first of all. As far as sharing with others, I would take it on a case by case basis, and as previous posters have said, be prepared for people not believing it, blaming your parenting and saying unhelpful and downright hurtful things- like, have you tried _______ (insert various things here such as diets, spanking, times outs, vitamins, etc, etc.) or, it's a phase and I think he'll grow out of it, or that's just the trendy thing these days, he's just shy (or nerdy, or smart, or advanced, or behind, or introverted, or spoiled, and so on and so on). Not trying to be a jerk or freak you out, but be prepared. Some of the people I thought would be most helpful, were not, and other people really surprised me. Neighbors responded with pity (not helpful) or overly smiling and then never talking to us again, or simply accepting it like any other kid that just needs a little more understanding. Just be prepared for anything. But really important is to know *how* to explain it because if you can't, it confuses people and makes it even more likely that they'll not be understanding or accepting. I would process it yourself for awhile and then decide what you want people to know beyond the label, does he have sensory issues that cause problems, is he impulsive and therefore needs more supervision than other kids his age, is following his schedule of utmost importance to avoid meltdowns, does he have trouble looking others in the eye and needs to be addressed directly by name...those types of things, so that they understand what it means to them, personally, to be around your son. And learn the phrase, "If you've met one person with autism, you've met ONE person with autism." Your child is an individual and what one kid does and responds to is not necessarily what yours will do. Good luck and welcome to the club. You're so not alone.
47 minutes ago · Like · 2
May 15, 2012 at 8:27 AM
Anonymous said…
It is not a disease!!! It's a disability 2 very different things. Get all of the information you can gather and take it one step at a time, it really isn't the end of the world, just the start of a whole new adventure! x
May 15, 2012 at 8:29 AM
Anonymous said…
It's not a disease. It is not something to be ashamed of or worry about telling friends or family about. You sound ashamed of your son as if he's got some hideous embarrassing disorder. My eldest has aspergers and he's highly intelligent, funny, and everything inbetween. Yes he has quirks and eccentricities but that's what makes him him. I wouldn't change it for the world. What you should be concerned about is the uphill battle you will prob face with school etc.
May 15, 2012 at 8:29 AM
Anonymous said…
Firstly it's not a disease and secondly be proud of who your son is when you tell people don't expect them to understand as that will kill you when they don't understand when times are hard...
Now you know ur child's condition you will be able to educate yourself read books and get intouch with families with children/adults with Aspergers you can help him now..my son is 15 with Aspergers and we are learning about this condition all the time, I am so proud of my son and as much as we have had difficult times with him I wouldn't change him he had a fab sense of humour and is unique :))
Most of all it's good to talk and if you need help with anything you should ask now you know his diagnosis, all the best x
11 minutes ago via mobile · Like
May 15, 2012 at 8:29 AM
Anonymous said…
When we received the diagnosis of Aspergers, we were relieved! We actually had a name for something we knew had been going on all along. I found in the beginning that some people were yeah, right...just another over used diagnosis. You have to be your childs advocate. I found that sometimes "Mama Bear" had to come out to get things in place for my son, but it pays off. We also found we had resources to fall back on for help. Sharing the info depends...how old is your child and who do you want to share with? My son was 11 when diagnosed. We felt it important for his school and teachers to know. We had to get the school on board with us to help. Then we let our son decide who he wanted to tell. He is now 16, has his drivers license and a great group of friends. He was bullied when he was younger and now he protects the "underdog" as school. He is involved at school and has become my "social butterfly. His friends know he has Aspergers and are OK with it. They say he can be "wierd", but it's ok, they like him anyway. He still has some quirks & we still have social situations to work on, but he has worked hard and is doing well. We take each day as it comes and each situation as a learning experience. It's not the end of the world, your child can become a contributing member of society! Be an advocate for your child.
May 15, 2012 at 12:17 PM
Anonymous said…
I feel exactly the same way about my daughter.I wouldnt change her for the world & we have just had to learn to adjust to finding different ways to deal with every day things & how to deal with her behaviour in a way that works for us x
May 16, 2012 at 8:08 AM
Anonymous said…
Wow,everyone has said it all....all i can add is ditto,ditto,ditto, some people will get it and some won't.
23 hours ago · Like
May 16, 2012 at 8:08 AM
Anonymous said…
Everyones comments that it is NOT a disease is dead on. I screamed those words when I read it. IT IS NOT A DISEASE!! My son may be in the high end of the spectrum but he is amazing and smart. I was grateful to get the diagnosis because I knew there was something different about him and that made it easier for me to help him. My son actually told me one day that if they found a cure he would not participate because the Aspbergers makes him who he is!
May 16, 2012 at 8:09 AM
Anonymous said…
My daughter was just diagnosed. She really has no friendships because she is a little different. She is 9 yrs old. I'm wondering if I should tell other parents I think she would just get teased by the kids
May 16, 2012 at 8:09 AM
Anonymous said…
Its not a disease its a syndrome & its something I find I don't tell ppl if they don't need 2 no, of course u want to tell your family & I think a book or leaflet that gives you the low down would be good to hand to them to help exsplain, you can get lots of information on the national autism society, hope that helped x
May 16, 2012 at 8:09 AM
Anonymous said…
It's not a disease and NOW you have ANSWERS as to why he is a little different than everyone else. I tell EVERYONE but I started with my son so that he understood it.
May 16, 2012 at 8:10 AM
Anonymous said…
I printed out a letter I found on the Internet that was written to give extended family information about WHY my son was the way he is and HOW THEY CAN HELP ME HELP HIM! Do not let your extended family cave to fear of Aspergers. They are responsible for loving and supporting each other which includes you and your child and if they aren't willing to listen, learn, and pitch in then it is their loss because Aspergers (once you get over the shock and get comfortable with it) is a DELIGHT!
Get and IEP (individualized education plan) ASAP. Your child has a right to any modifications that may be needed to aid the student and the education team. This will be reviewed annually so use that opportunity to familiarize new staff to your child and his special needs, behaviors, "quirks".
As years pass and you and your support team (family, educators, friends, medical team) see how successful your hard work has been you will have a whole new problem. They will think he's cured! No! No! No! That's what all these folks mean by "it's not a disease". It never goes away for the person with Aspergers. They have tools and resources they have learned to apply to difficult situations, but that doesn't mean the situation is suddenly not difficult for them! (especially sensory issues). Imagine learning to overcome loud noises sending you into a tailspin only to be told you no longer have difficulty with loud noises! I am facing this with my teenager right now. Just when I thought we were on easy street (hah!), I realize that I will ALWAYS be an advocate for him. Someday when his wife calls to say she's had it, I'll be the one to help her realize HOW he loves her and HOW MUCH he loves her.
You are unimaginably overwhelmed with a recent diagnosis and so much to take in. Give yourself some time. I grieved, I feared, I felt helpless. I took my time to get the inevitable JUNK out of my head and heart - and then I got busy! You and your son are going to be FINE. You will be GEAT! You will be delighted by his soaring strengths and empowered by your ability to address his weaknesses.
P.S. you will never make it to "easy street". No parent of any child will :)
May 16, 2012 at 8:10 AM
Anonymous said…
Please tell them. Give a simple answer as to what Aspergers is to your relatives. It's not a dirty secret.
May 16, 2012 at 8:10 AM
Anonymous said…
Wow a lot of people bagging on this poor parent about choice of words. Take into consideration they are still in shock and we were all in the same boat at one point. Personally at first I was glad to have it finally labeled, but then I immediately worried about what that "label" would mean for my sons life and how people would catagorize him. For that reason I tell only when someone asks. My son has no dissability or disorder he is unique. He has a great knowledge of life sciences, loves water a little too much, is extremly caring, has a huge heart, tells weird jokes and needs help remembering how to stay safe and make the right social choices. So our lives are now structured a little bit more than we used to be. All the "bad" that goes along with it just helps us all learn what buttons to avoid pushing. Take it on a case by case basis and love the unique gift u have and don't analize it too much.
May 16, 2012 at 8:11 AM
Anonymous said…
Hey please ...not disease...condition ! and its really not that bad.....einstein had it beethoven had , sir winston churchill had it....!!!! the real clue is learning all about it ..you will find it can actually give you an advantage if you know how to control it !! if he seems a bit aloof dont worry ,he does need to know your their for him , you'l be 'extra' special to him , i am sure you are already !.
May 16, 2012 at 8:11 AM
Anonymous said…
Family should be the easiest people to share the news with. Depending on where he is on the spectrum you may not have to tell many people at all. I don't understand why it is hard to share the diagnosis with family? I would be interested to know why. Only one person on my sons dad's side wouldn't accept it, and said all kids are labelled these days and there is nothing wrong with him, everyone else wasn't surprised he had some kind of condition because it was pretty obvious from birth. Talking about it will help you and him, don't be scared :)
May 16, 2012 at 8:12 AM
Anonymous said…
OH !!! And there is an awesome book that can help you explain it to others...ALL CATS HAVE ASPERGERS SYNDROME by Kathy Hoopman. Really cute book, simple with humorous pictures, great for kids and adults.
May 16, 2012 at 8:12 AM
Anonymous said…
As a newcomer to this, it is awfully hard to take in. Two years ago, I was told that my son was autistic. At this point, he had a hearing loss and we felt that it was more his hearing than anything. When he got his ear tubes, he was a different kid. Socialable, etc. Then he started first grade. He had a tough teacher who had no room for adaptability. He did fine academically, but not so grab socially. School continued to tell me my son was autistic which at that point, I still didn't see it. This year I have observed my son chewing on everything (which he did before but I brushed it aside as a chewing issue and not as asperger's symptom), I saw him sitting on the playground by himself while other kids ran around and him not being engaged in playing with them. I saw how incredibly emotional he was over every little detail and how "had to wear this color shirt" from day to day. I see his head shake, etc. I am finally in the whole "acceptance" part of this condition. It is really hard to do and take as long as you need. Every child is different, every parent is different in how they will handle the diagnosis. My son is still in denial, my husband still thinks it is adhd.
May 16, 2012 at 8:12 AM
Anonymous said…
First, it's not a disease! It's an alternate kind of brain function, which has some societal setbacks but often some gifts. And knowing can be such a relief!
May 16, 2012 at 8:12 AM
Anonymous said…
Asperger's is not a disease, it is Autism, my son is 10 and was diagnosed when he was 6, he is a beautiful boy who yes has some social skills issues but a very intelligent child, a blessing, a gift from God. Thats what you tell your family, they will understand.
15 hours ago · Like
May 16, 2012 at 8:13 AM
Anonymous said…
My beautiful, bright ASPIE daughter who is reading this with me, wants you to know........Aspergers is not a mental illness..........it's a mental SKillness! My daughter is amazing, yes!! Tell family members. Your child will process information differently and need extra help developing social skills. He may or may not like to wear socks. Always remember this is a neurological condition and so they may be hyper sensitive to some touch and completely oblivious to cold (like my sockless daughter in 0 degree weather). Anyway, you may not know it know, but you've been especially blessed! It's amazing the things I see in a new light because of my Emily. READ READ READ all books regarding your child's diagnosis. You're worried because it sounds scary............you're a concerned parent and that is your first step! Love your child and READ!
15 hours ago · Like · 1
May 16, 2012 at 8:13 AM
Anonymous said…
say everything it is important that they (family) know misunderstandings come from NOT understanding!!!
June 6, 2012 at 4:55 PM
Anonymous said…
I tell people my daughter may not be wearing socks, but she is wearing under ware! and then I laugh!
June 6, 2012 at 4:55 PM
Anonymous said…
I just found out 4 weeks ago and my son is 11. I don't know what to do either. They have heard me say so many things by now ..most don't understand or believe me I think. Many people think he is to social. A misconception I am understanding.
June 6, 2012 at 4:55 PM
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