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

Filed under:Aspergers Diagnosis — posted by admin on May 13, 2008 @ 2:47 pm

Finding out that one’s child has been diagnosed with Aspergers syndrome can be traumatic. Parents naturally feel guilty even though there isn’t anything yet known that could have prevented the disease. 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 syndrome, 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. You will also want to start with those closest to you, beginning with the siblings of the Aspergers syndrome individual. Telling younger children that their sibling has a brain problem that causes them to have problems talking with others, causes them to focus inordinately on certain subjects to the exclusion of others and results in them performing ritual behaviors may be enough. These kids have seen everything already and just need to know that there is a reason behind the behaviors. It can help siblings be less frustrated with their sibling and can also become advocates for the Aspergers syndrome child. Having a name for what the child is seeing can help a great deal.

After the family becomes accustomed to the diagnosis, it’s time to speak with the extended family. Encourage them to read what they can on the subject and help them connect the symptoms they see with a brain disorder that can’t be helped. If they know that much of the behavior is beyond the control of the child, family members can come to love the child at the level they’re at.

Certainly, teachers and educators need to understand the diagnosis and how it is affecting your child. Plans need to be made to alter the educational style the teacher or teachers use to help teach the child in an effective manner. A frank discussion of the diagnosis should be followed with problem-solving methods that will help the child thrive as best he or she can in the educational world.

Beyond family, educators and perhaps daycare individuals, parents of an Aspergers syndrome don’t necessarily need to tell the rest of the world, especially if others don’t see much of a problem in the child’s behavior. What you do eventually say can be as simple as “my child has a brain disorder” or as complex as explaining the disorder to its fullest to interested friends or acquaintances. Certainly, the conversation needs to take place every year as new teachers come into the picture but, in today’s times, Aspergers syndrome is more well known and more easily understandable than it once was.

comments (12)

12 comments »

Every year we make an appointment with the new teachers & we take his 504 plan with us from the current year & talk about what has worked & what doesn’t work. I have only twice in 7 years had teachers that were bnot receptive to what I or his councelors had to say. It also helps (in grade school) to have the teacher come with you to talk to the new teacher about what he/she did that worked or didn’t work. The other things to do its to let the teachers know that you are available anytime for discussions. It makes them feel less like you are dumping this child (with problems) on them & running. For my child that is in Middle school. I meet every 9 weeks with all of his core teachers & we talk about the good, or the bad & we talk about ways to help him thrive. He also has a great school councelor that is willing to help anyway she can. The main thing is to approch the school as though you are a team & with this team you can accomplish anything for your child.
Comment by Tina Barragan — May 13, 2008 @ 3:21 pm
My son has not received a formal diagnosis but it has been confirmed that, based on what I have said, he probably does have aspergers. Teachers in year 5/6 were unreceptive and adamant that he was just a badly behaved child … which made his behaviour worse! Secondary school is better and tomorrow I am meeting with the school counsellor in an attempt to come up with an action plan. They have listened to my pleas for positive reinforcement and the result is that for the first time in his school life, he is beginning to apply himself and do the work to the standard of which I always knew he was capable. As for explaining to other people – I’ve stopped doing that as they just seem to think I’m making excuses. I handle my son in the best way I know how and if it doesn’t please others I don’t particularly care – I’ve known the child long enough to know what he responds to and what he doesn’t.
Comment by Sarah Murray — May 13, 2008 @ 3:43 pm
My grandson will be 7 in August, 2008, and we have had such horrible communication with his old school that my daughter just pulled him out and he started a new school today, with 20 some days left of school. We think the new school will be so helpful with him….but the old school was anything but helpful. In fact, the Principal of the school actually seemed delighted to get my Grandson into trouble and always tried to make it look like it was his fault. From his desire (or necessity) to eat with only cold lunch kids and not be placed with the hot lunch because of the smells of the foods to being bullied out at the playground constantly, and by the same children…it has been a waste of the whole first grade in his old school. Help actually could have started in Apr of 2007, when he was diagnosed with NLD, Asbergers and ADHD…but noone at the school would do anything on their part to get extra help for him….it has been a very sad time! I hope none of you have had these similar problems, although I think there are many people in the same situation as us! I do hope and pray that they find answers soon to what is causing all of this and then are able to get the government behind some research and help for these children and their very frustrated parents and grandparents!
Comment by Sharon Bessey — May 13, 2008 @ 3:48 pm
Gosh, Tina, I’d love to know where you’re at because I’m ready to move there! lol…we have had problem after problem in explaining to the school system about my son’s disorder & getting them to understand it. It has become almost a daily battle to get them to even implement the things that need to be done in the classroom to help him be successful. My husband and I are decided that if at the end of elementary school, they have not improved, we’re bringing him home…possibly at the school district’s expense…
Comment by Lela — May 13, 2008 @ 4:09 pm
The hardest part was telling my parents. My mother wanted to know when my son would be cured! My brothers and sister in laws think my son is spoilt and needs firmer dicipline. It doesn’t help that he has been excluded from school because the school decided he was unsafe to have and I am now in the process of trying to get him into another school. We have only just been getting the support and advice we have been asking for but it has taken this crisis to get the powers that be attention.
Comment by Julie Dent — May 13, 2008 @ 4:26 pm
We have a 5 yr old son that will be starting Kindergarten in Aug. We have been to the school and have spoken to all…teachers, counselors, etc…and our son is so high functioning that he does not qualify for any special needs classes and such. So, we have decided to homeschool. I have been homeschooling him for a year now and he does well for me. He would fall between the cracks at public school w/o any help as he takes a long time to respond to me. But I can get through to hiom with patience and love, and we do get through the day.=) He has Asperger’s and ADHD. Also Sensory Integration Dysfunction. WOW. He’s a hand full, but so funny. And so bright. But yes, Tina. Be oh so grateful for the wonderful support you have with your child’s school. God bless.
Comment by Tammie Benton — May 13, 2008 @ 4:27 pm
i have been currently a nanny for a 10 year old boy that has aspergers. the biggest problem that i have is that the school refuses to accept the fact that this is the way the boy is. they r tryin to control his behavior instead of coping and workin with it. i will not give up on him to get the education he deserves. his aspergers is mild compared to some stories i have read. he has bouts of anger in his mind and makes storm noises and mimics explosions when he gets angry. he has said many times that he is blowin up the school in his mind. he hates school period. he communicates very well but not socially. he is highly intellegent. this is my first time workin with aspergers and need to know more thank you
Comment by angelena watts — May 13, 2008 @ 4:55 pm
I’ve found that professionals like teachers have been very supportive and helpful – even ones who have no experience in this problem. My biggest problem is with extended family. Although they don’t say so, I think they are convinced that my husband and I could “fix” my son if we just disciplined him properly. I get this feeling more from what they don’t say than what they say: a total lack of empathy or curiosity to understand him. I wonder if this is a common problem?
Comment by Susan — May 13, 2008 @ 5:03 pm
I find that most of the friends and teachers that work with my son are very willing to find out about Asperger’s and help him fit in. This is far from easy at times. I have lost some relationships over it. The people just can’t understand the behaviors. I find our family does better without these people. The extended family is hard, they are trying, but we live apart and I feel we start over again each time we are together. I have learned to take it one day at a time and handle the issues as they come up. We try to be proactive at school and with his friends. I wish the school had more training with these special kids they are such a joy.
Comment by Kristie H. — May 13, 2008 @ 6:12 pm
Susan’s comment really did make me feel that I am not alone.
I have an 11 year old son who was diagnosed with Aspergers Syndrome three years ago. Since the formal diagnosis (it took moving from a local catholic school to a private independent school to get a diagnosis). Now he has a very supportive, understanding network and is thriving. The only thing is that sometimes family and extended family do not understand fully the situation thinking that he will just ‘snap out of it’ or that a firmer hand is needed and just say ‘no’. I am very good with my son, patient and kind and feel that a gentle understanding touch is by far going to have a better outcome than a strict, just do it attitude. I know how you feel Susan as my family live abroad so I have no support network other than the school (to a certain extent friends) although they don’t fully understand or want to. So yes, I think this is a common problem Susan but more because of lack of education in understanding Aspergers even though I have told them what it is all about. Just carry on doing what you are doing Susan and to hell with what people think – only they can truly understand the situation if they are in it.
Comment by Rosanna van Berkel — May 13, 2008 @ 7:00 pm
These are all great comments and I have found this advice useful for my son who was diagnosed 8 years ago. He is now 16 and moved schools and while the staff are extremely supportive my biggest problem is the other kids in school who dont understand and who tease my son. I have offered to come to the school and talk to these bullies about Asperger’s but I’m really not sure what approach to take with teenagers who are typically egocentric and are not people who really care. Can anyone help with any advice?
Comment by Verity — May 13, 2008 @ 8:18 pm
I have to tell you, my grandson goes to a school strictly for kids with ASD and there are certain ones who still tease other kids. I don’t get it. They’re all in the same boat just with different issues. You’d think this would be a safe place but it isn’t. I am very thankful though for the training the teachers and counselors have. It has certainly been a mixed blessing.
Comment by Sandy — October 5, 2009 @ 11:39 am