Telling Friends About My Child's Diagnosis

You don't need to announce it any more than you would need to announce it if he had any other disorder or disease.
IF behavior happens that is a result of missed social cues or some other aspect of his autism, then you can say something about it.

I don't know how much this will help, but wanted to share with you something I recently observed~

I volunteer in the school library at a time when there are tech classes going on. One of the students in one of the groups is autistic and their actions can affect the class as a whole. This student may speak out of turn a lot, off topic, become very distressed when their usual routine is disrupted, may take some of the picture books over to a chair to read while the teacher is instructing the group, and may start to cry over things which might seem easily-solvable or inconsequential to their peers.

This Monday, the special ed teacher spoke both to this students classmates about this student's autism. She preceeded the conversation with " First, we don't usually discuss students with other students, however, So and So's mom and dad both felt it was a good idea for me to talk to you about So and So." She went on to describe autism as a neurological disorder one never grows out of, that this individual perceives the world differently from a typical person, that some autistic students are extremely gifted but, when their routines are challenged, can be very upset. She also mentioned that the student "strongly identifies with being autistic" which, I think, gave that group some freedom to openly acknowledge this in a constructive way. The teacher addressed the fact that there were outbursts at times and that the student was in fact working on this.

I found that the conversation between these sixth graders was insightful, compassionate and thoughtful. One girl wanted to know how to be a friend during recess. Some other students had good questions about autism. By the time the conversation was over, I had a better understanding of this very original and quirky student and was so heartened to see the openness and acceptance on the part of other kids.

In my own child's second grade class, there is a student with autism (higher functioning) whose parents have not talked openly about this. I know this is hard for them, however, it is also very difficult for other parents because they do not understand 'why the parents allow him to act out'. Because I am not at liberty to share this information, all I can do is to offer some positive ways my son and other kids can help the child when those situations arise. This student is very intelligent and does tease other kids mercilessly--and won't stop when asked, but cannot hold his own when teased back. This creates a lot of conflict, sometimes resulting in physical harm. I truly wish that we could help our second graders to use better coping skills when this student starts to engage in unwelcome ways. As it is, we have a lot of angry parents and angry kids.

All of this to say, I think you should trust your inclination to share with those who might need to know. You don't say how old your son is, but if he's in school, do talk with the specialists there about how to open up that conversation. Little kids need very simple language ("oh, when you see Kiddo flapping his hands, this means he's excited") and positive explanations. Older kids and adults may need tools for "this is what works for us when X happens".

Hugs to you, you obviously care very much about how your child does in his world. I also wanted to add, there is a great manga series called With the Light, the story of a boy who is deeply impacted and his mother's experience of learning about his autism and connecting with him. Here's a link to a preview/review of the book. I found it very enlightening, realistic and hopeful:
http://autistscorner.blogspot.com/2009/09/autism-manga.html

Oh my, your post totally tugs at my heart strings. I have a SN child that has a chromo abnormality along with autism. She looks completely normal (and please take that with a grain of salt) some people can tell immediately when a child has special needs by physical and facial appearance so IMO they tend to act differently towards them. My child does not. But, when she starts acting different in front of other people and doing things that a typical child her age would not do, i tell them she has autism. I feel if people know that what she is doing is normal to her but not necessarily us, they are more accepting. Sometimes i like to give a quick overview of her disability. Like for example, when i stop to talk to someone in the grocery story and have my child with me she likes to get really close to that person and rub your belly or your arms and say "hi hi hi hi". So i have to redirect and say "no we do not touch there, let's shake hands and say hello how are you". My autistic child is very very loveable and loves to be affectionate but the at the same time DOES NOT UNDERSTAND boundries or space. When i quickly explain why she is acting they way she is, they somewhat undertand and seem more accepting. Some parents dont like to do this either, so it is what you feel comfortable with. Some families like to be really private with their kiddos, so totally up to you. I just figure the more who know about my baby they more accepting they are and will understand she is different. :) Good luck!

I don't have experience with ASD, but do with other brain disorders. Here's how I've handled things:

1. Everyone close to us knows. There's no shame in having brain disorders and it helps people understand our son that much better. I can't really see a reason why friends would tell others, but honestly, I don't care if they do. Maybe it will encourage someone whose child has the same issues to ask me questions. I have helped out a lot of people just starting down the path with brain disorders and wish I'd had the same support at the beginning. As you have likely experienced yourself, it's very lonely when you're faced with a brain disorder.

2. Our son's friends have never teased him about his disorders. He said he's told them but they don't care. Kids will tease for all sorts of reasons. It doesn't take a medical issues to bring out the worst in some kids. I was teased for having red hair and not dressing the same as the popular kids.

3. Yes, it's beneficial for people to know. The only labeling I know of is the "bad child," "difficult child" and "out of control child" labels that special needs kids often get stuck with when people don't know the truth. You don't have to broadcast the diagnosis from the rooftops, but let people who are around your child regularly know. And, again, don't have shame with it. If you act like ASD is shameful, it's going to make your son feel shameful. Our 11-year-old son has ADHD, ODD, OCD, anxiety and several other conditions. I've just explained to him that the conditions don't define him and that everyone has an issue. Some kids need glasses, some need braces, some need wheelchairs, some kids still wet the bed at night, etc.

For school, you'll want to get a 504 plan or IEP in place right away. If you're not familiar with those options, check out wrightslaw.com for info. The school can provide a wide range of accommodations to your son and they can do it discretely, too.

All the best to you as you start this journey!

I think you have a bigger decision than just "do I tell" and that's "how do I want HIM to view this".

If you hesitate talk about it openly with those close to you, he might feel like it's something bad, something to hide, something to be ashamed of. If you model matter-of-fact openness about autism, he will not feel labeled or different, he will just see it as something that IS and will be better prepared to confidently deal with any peers who try to make him feel badly about having autism.

Think of this not as a diagnosis, but as an explanation-an explanation for why he is the way he is, does things the way he does, etc. It's not a disease that can be cured, it's a condition that modifications make better. Like an allergy, now you know it explains a lot, gives you a path to avoid problems, gives you a reason for why certain behaviors exist. There is no cure, just management, and that's ok.

It has to be ok, because this isn't just a diagnosis. This is your son. This is part of who he is and he's wonderful and you love every part of him, including the parts that are effected by autism.

Tell friends and family. Talk about it openly, in front of him. Talk to him about it. This isn't a bad thing to be hidden, this is who he is and that's wonderful.

Good luck!

I don't have much experience with ASD, but I do know a bit about childhood/adult mental illness.

It's my understanding that Autism is a neurodevelopment disorder, and that's not something that can be treated and cured. If that's the case then won't it be part of his identity his whole life? I think the best thing you can do is make it known by your actions and words that there is nothing to ashamed of, or kept secret.

I also think that the more transparency parents give to both neurodevelopment disorders and mental illness the less stigmatizing they will be, which is good for society in general.

One last thought, I think kids would be more likely to tease your son for his behaviors related to ASD rather than the label/medical diagnosis. If anything I would hope the diagnosis would garner empathy rather than ridicule, particularly if parents are aware as well.

ETA: I'm so sorry to hear about your son's diagnosis, and I hope you and he find all the help and support you need.

I find that people are more likely to accept a child (or adult) if they are aware of the diagnosis. If they are not aware of a diagnosis they will label that person as having bad behaviour, or acting weird, but when they are aware of the diagnosis they are more understanding of these behaviours.

Share when you feel it would help the situation - if he's having challenges, etc. You don't have to tell everyone everything. My son isn't "obviously" autistic about 80% of the time so I don't share. But when he's being quirky where it's an "issue" socially, I do share that he's "on the spectrum" - most people get that.

1. they might, so think about that first.
2. kids tease kids. No matter if they're autistic or not. It sucks. It's something I think about a lot. But here's the thing - our kids are different. Even WITHOUT the diagnosis, they will probably be teased because they don't quite fit. So we have to arm them with the knowledge that they are great kids. Hopefully the school has a good anti-bullying policy.

You can also ask the teacher to keep her eyes open. I have made a point to talk to my son's teacher and work with her to make things as easy as possible in the classroom. We're a team.

3. No. It's not. It's a very important thing for you. But unless they are a caregiver or intimately involved in his life/care (doctor, etc.), it's nobody's business. It's nothing to be ashamed of, but it's also a personal thing. Treat it the same way.

I have a page on my website with helpful links to autistic bloggers and parents that deal with the issue of disclosure and diagnosis - http://www.autistikids.com/disclosure--diagnosis.html

Feel free to visit it - you can read more of the blogger's work on their blogs, and you can often ask questions in the comments. If you need some TLC - email me at ____@____.com will be autistic forever - it's how his brain is wired. But he will learn more about himself (and so will you) and he'll learn to work with his wiring. The trick is to NOT fight it, but to engage with it - where are the challenges/where are the benefits?. That will give all of you the power to move through things.

A label isn't a bad thing unless people make it a bad thing. For us, as for what labels are for - is to tell us what's going on inside. It's a HANDLE on the situation. Before you didn't know why things were happening the way they were. Now you have an idea.

Also take advantage of the resources page on Autistikids - there are TONS of great pages, websites, etc., with very helpful people. I'm there for you as well.

I can completely understand where you are coming from. My son is on the spectrum too. Im not ashamed of his diagnosis, but I also don't want him labeled. So here's how I handle our situation. The school is aware of his diagnosis. Close friends and family are too. But I do not share it with everyone at the park. I don't feel that is important. If we are on a new play date and a mom brings up his strangle little actions I'll mention something but I do not go into grave detail. When it needs brought up, I bring it up. If not I let it go. Good luck to you. I know how hard this is. My son is 8 now, and fitting in isn't his strong point.

Please let your friends know. Friends help bear each other's experiences. My dear friend has 4 children, 3 are on the spectrum and also have genetic muscle issues. Parenting is hard under any circumstances. Parenting in her circumstances can take all her strength. I cannot identify with her because I parent 2 kids who don't have neurological issues, but I CAN and WANT to encourage, pray, hug and be a sounding board. I have researched things and sent her articles I thought she might not have seen. Mostly, when she's had a very trying day, I listen to her cry and tell her I love her. I am confident she has an "S" imbedded on her chest for super mom. She is an amazing person and I'm glad and humbled she allows me to be a part of her journey.

When you share you will have the opportunity to share your journey. You are not alone and more than likely your friends will want to rally around you and support you.

Blessings!
L.

I think if his classmates are aware of the diagnosis, they will be a lot more tolerant of him. If it's explained right, I doubt any kids would tease and the ones who do, would tease him anyway. It's probably not vitally necessary for everyone to know, but I think your son will find himself in a much more welcoming place if people he deals with daily are "in the know."

Hmmm...how old is your son?

I know several kids (a few relatives, several children of friends and classmates of my children) with ASD. It's one of those things that's just known at this point. It's something that the kids share pretty freely and to my knowledge, it hasn't been an issue for them. I teach test prep to teenagers and every 3rd or 4th class will include an Autistic/Asperger's student and they tend to speak up and let me know what they need to make the room and class comfortable for them (e.g. seating that prevents them from having a reflected glare of the sun in their line of sight, turning off a fluorescent light that they can hear buzzing, taking more frequent breaks, etc.). One of my friend's sons is in 7th grade and didn't walk until he was 4 or speak until he was 6. He gets intensive services and a ton of peer support. He was just elected to his school's student council, and it wasn't a pity vote. This boy is very open with his diagnosis, very sweet, and extremely popular. So not all children out there are cruel and want to hurt a student who is diagnosed with something.

In my experience, the "label" helps provide information to others. It can explain why someone has a quirky habit or behavior, and what others can do to accommodate that (ignore it, address it, etc.). I worked with a guy who I thought was a bit unpolished and "out there" and then he mentioned he has severe ADHD and suddenly it all made sense. My boss is also being diagnosed with ADHD (his teenage son just was) and again, it helps make sense of some of his behavioral patterns and gives his staff the tools to work with him more effectively.

In any case...I would tell your close friends who you really trust and let them know that right now, you're still getting used to the dx and are asking them to keep this information private. As you get used to this, and get more connected into the ASD community (Autism Speaks is a GREAT organization) you'll get a better feel for how much to share with whom and when.

Best of luck as you adjust to your new normal...I don't have an ASD child but do have 2 with ADHD (1 with learning disabilities as well) and a spouse with a mood disorder so I can empathize a bit with adjusting to the idea that someone we love has a "label" - on one hand, you don't want that to define who they are in the world but on the other hand, it explains an awful lot and can help connect the ones you love with the right people, programs, services and therapies that can help them be their best selves.

I imagine they already suspect it anyway. I have known a few kids diagnosed with autism and in both cases I was not surprised at all.
And I would hope that your "friends" wouldn't gossip or pass around personal information about you and your family!
Finally, yes I think it's good to share, so people are aware and more sensitive and understanding. And again I would hope that they would handle this information with discretion and compassion.

Hugs to you as you come to terms with your new "normal". It's not easy when learning that your child doesn't fit the mold of what society considers "normal". My son has his own uniqueness that took me a while to wrap my head around and come to terms with but as I did I realized that what I think about him is how he will think of himself. That's some pretty powerful stuff! My son is awesome and even though he may not be what I imagined him being when I was pregnant with him, he is exactly the way he was meant to be and I wouldn't change a single thing about him. That being said, I say take the time you need to come to terms with your son's diagnosis. Find a support group - there are online ones even on Facebook where you can talk with other parents going through the same thing. I don't think you need to shout it from the mountain tops that your son is autistic. To be completely honest, most people will have a hunch as they get to know him. My son was born with severe type of syndactyly - where all five fingers were joined together on his hand. I stressed on whether I should tell everyone I knew, was petrified about dropping him off at the church nursery or anywhere else. I didn't know if I should point it out and explain about it but over time as I came to terms with it and got to know my son as he grew, I stopped seeing the difference to the point that now if someone asks, "what happened to his hand?" I get scared and grab his hand looking for blood or to see what is wrong. :) It's such a part of him now that it usually takes a good few minutes for me to figure out they're talking about his hand difference. Sorry for the long windedness... so in answer to your questions -
1. Who cares. Your son IS autistic. That's who he is and you should embrace his difference instead of attempting to hide it. You want him to grow to be proud of who he is. Not teach him to feel ashamed.
2. I have this fear every day of my life for all three of my children. I'm pretty sure every parent has this fear to some degree. There's nothing we can do to prevent other children from teasing. What we can do is to fill our children with so much love and build their self confidence so high that when they are teased they'll shake those bad vibes right off because they know without a doubt they are unconditionally loved and not alone.
3. No. It's not necessary for people to know. If someone asks you, which I highly doubt anyone ever will, be honest but just like someone once told me when I asked the same question about my son. "Would a mom walk into a room and announce my child has down syndrome?" No. People can see that difference, they can see my son's hand, they will notice little things about your son. Let them. Everyone is different. That's the beauty of life. :)

Best wishes to you and your family!

Bring it up in natural conversation. When it's appropriate.

Such as:

"Your son just hit my child Lovingmy 3 kids, what do you want to do about it"?

"Well, I've been trying to find a way to bring this up with you, can we sit down for a few moments? We have been noticing some issues with little guy and we took him to be evaluated. He was diagnosed with XXXXxxx, it's in the Autism diagnosis. He's high functioning and that means ....... I am hoping letting you know what's going on with him will help us to find good positive ways to keep your kids safer and help our little kiddo to learn better skills. What I'd like to do right now is this....."

Then give her time to respond and share her thoughts about what you're said. She might know a little about Autism and she might not know anything.

Who really needs to know?
School officials - they need to know in order to come up with an education plan.
Doctors - anyone who's helping you figure out treatment plans/options.
Friends - maybe some close friends of yours (adults) - but it's optional - sons friends/parents of your sons friends - I'm trying to think why they would NEED to know but I'm coming up blank.

I don't blame you for not wanting your son labelled.
First, tell your close friends-the ones you really trust with your heart.
Good luck!

I agree with Patricia G's comment.

With school and with family, I would tell right away. With the parents of his friends, only if you suspect that the information will help your son remain included in events away from school.

With his friends, no. I would not even tell him until he is old enough to process the meaning rather than blurt it out at school or use it as a crutch for misbehavior.