What to tell our son about his DX

Post Reply New Topic

My 10 year old son's therapist recently told us she thinks he has Aspergers. He has not been through any specific testing, but most parts of the diagnosis seem to fit (though not in all areas). My husband and I agree that we need to talk to him about this. I have read several other threads that seem to encourage telling kids as soon as possible. But my question is about how much to tell him. My husband is concerned about naming it as Aspergers, and has suggested that we just use more general terminology about how his brain works differently from most people, and the pros and cons of that. He worries that giving him the term Aspergers will be stigmatizing for him.

A little background: most of his issues happen at home (meltdowns, tantrums, etc). He is high functioning outside of the home and we do not plan to seek any accommodations at school. He has struggled some socially, but in general does really well at school and is finally making some friends (though he really wants a "best friend" and has not found one yet). He knows he is a little different from other kids, but really resists those differences and is really careful not to give kids any reason to think he is different. Because his diagnosis is not really obvious to most people, we wonder if he will have a hard time relating to the full spectrum of Aspergers if we give him that specific term. My husband is also worried about the potential for stigma and/or being made fun of as a result.

So, has anyone tried to share the DX without the name? Would you recommend this as a first step or is it better to just give it to him straight right away? Thanks!

This is coming from someone with a husband who was diagnosed with Aspergers at 50. Who looked "quirky and different" his whole life, until he couldn't boot strap it any more in the NT world at the age 49. He had a huge meltdown at work due to a job responsibility shift (working alone to all costumer service). He lasted three months until the meltdown, and being transported to the psychiatric unit for what they thought was a psychotic break.

After almost 20 years of marriage, I was filing for divorce because "quirky and different ", looked more like self centered, total jerk behavior and I had had it. That was before the melt down at work. Everyone supported me filing, even my doctors.

My husband had no diagnosis.

He managed to pass as a NT through elementary school, middle school, high school and it started unraveling in college. His executive functioning skills are horrendous. He had surface friends. My husband is pleasant, kind and caring but no clue how to keep a relationship (friendwise) going. Out of sight is out of mind. Our dating relationship was me putting in a good 80% of the contact effort. My husband literally had no idea how to date a woman.

Before my husband got his diagnosis (at 50), two psychiatrist (both asshats) diagnosed him with...

schizoid personality disorder
severe OCD
severe anxiety
major depression

I bought the depression, and will take the anxiety diagnosis. I have friends with severe OCD, my husband really didn't fit that diagnosis. I looked up schizoid personality disorder. My husband definitely didn't fit that AT ALL.

I hunted around for answers. When I did the self tests based on what I only saw, he scored off the charts for ASD. It took us $2,000 for a diagnosis.

The doctor said my husband emotionally functions at a 14 year old level. His executive functioning skills are rubbish. My husband has to actively learn social skills. Our daughter seems to learn this stuff out of the air. My husband has to consciously observe and think about it.

We are still married because now there is a reason for all his meltdowns, ignoring me, the way he talked (Aspie monologs), lack of transition skills...

Had my husband been diagnosed at 10/20/30...I wouldn't have wrote all above. He/I would have known his behavior was not on purpose. He would not have big chunks of family still hating his guts for his actions as a teen/young adult. I would have known my husband has misophonia, and sensory issues while eating.

My husband hates the texture of food in his mouth. He is sensitive to food smells. He hates the feel of silverware touching his tongue. My husband has been like this since age 5. No one knew. Not even his parents, because my husband thought everyone was like him sensory wise. My husband used to eat alone because eating with others makes the stress worse. Do you know how that feels as a wife? That you think your husband believes you are a gross ditch pig at the table (for 25 years), only to find out it isn't you, it's the entire human race and the mere fact he has to eat that sends him over the edge. Oh..and add to the fact he only wants to eat cheap raman, fries, soda, ham/cheese sandwiches, plain rice, plain baked potato, and almonds. Those are the only foods that don't feel weird in his mouth. You have no clue how many dinners the garbage can got. He couldn't eat them, and couldn't explain why not.

Awful doesn't begin to describe how both of us felt. I was suffering and he was too.

Quirky as a NT and quirky as an Aspie are two totally different things. NTs know all the social ins and outs, and can adjust their behavior if they want. My husband is quirky because his brain misses the grand majority of subtle human interactions. This affects everything in his life. You can be quirky, but NTs will scratch through the quirky surface and see there is a boatload of stuff missing. You can't truly hide being Autistic, no matter how high functioning. It is draining.

It is what it is. If your son is on the spectrum, get him help now. Don't wait until his life has derailed at age 15/20/30... People will judge him anyway, diagnosis or not. Knowledge is power. He won't be like my husband floundering, wondering why the universe is so hard to understand.

As for being better outside of home behavior wise. My husband always held it together for the sake of not embarrassing himself and others, having all the meltdowns and other Aspie related quirks at home.

I would say nothing about ASD until you get the results, because now you truly don't know. It may not be ASD. No reason for drama until you know for sure.

You worry about stigma, but not knowing is much, much worse.

Wait until you know for sure, and then tell him the name and the traits.

Talking about the name is important, in my opinion, because it shows him that this is something known, and therefore he clearly can't be the only one.

I agree with Ettina.

Also good to emphasize the range of possible expressions of autism/aspergers. This is about recognizing patterns, not biological destiny.

Thank you for the responses. I understand the suggestion to wait until we know for sure. However, at this point we don't have any plans to do additional testing. His therapist specializes in AS kids. He has been seeing her for the last year for general anxiety and anger management. Though she has not put him through any specific diagnostic tests, she told us she is very sure that he is on the spectrum. A psychiatrist has also told us that he exhibited several traits during his single visit to her office. In talking with our therapist, she did not think it was necessary to do additional testing, since this might hard on him and she did not think it would change the outcome. In reading about it, it certainly seems to fit very well, though on the more moderate end of the spectrum. So for right now, we are proceeding as this is a sure thing. Do others advise we get a second opinion or will that just create unnecessary trauma/anxiety for him? thanks

Testing buys you options...

My nephew is also an Aspie, and his parents were dead set against testing. At age 8 he derailed at school. No diagnosis, no help. With no 504 plan or IEP, the day he was caught with a small pocket knife and that was it. Expelled from the district for the rest of the year.

It is not fun scrambling for a school when you have little to no options. It's not fun trying to get tested when there is a 4 month wait at the developmental pediatrician.

The only reason I would test now, is the longer you wait, the more the school district will fight you later on. They will point out he was "just fine" throughout elementary school, and now in middle school is being just a PITA as opposed to being Autistic.
Which is happening right now to my daughter's friend at school. She boot strapped it all through elementary school on a behavioral 504 plan, and now all hell has broken loose with sensory issues and limited social skills. She's 11.

Of course the district says show us the testing, or go pound sand.

I'm a more it is what it is person. I would have my daughter tested. We would want to know, and she needs to know. There is much more help for children under 12, than 13-18. There is absolutely almost no help for adults who get diagnosed, at least where I live.

I'm for second opinion or get testing from who you are seeing. If they are seeing him for emotional issues, surely they can help them cope/deal with the testing? Around here the child's test is broken up into different visits. It's not a one shot deal.

Maybe obvious but please explicitly say to him , " (insert name) I love you. No labels. It's a learning process to us all, even those Phd s are still learning about the science behind it all. I Wish it could be simpler, easier, I wish I know all the answer. It's okay if you need time. And more time. Or space. You do not have to be happy all the time. You do not have to try so hard to be you. And just in case you forgot, this is a note, saying I love you. So whenever you have questions, or want to talk, or just you know, want to sit next to me in silence or fro yo, I am here. "

About the knife....

The district has a zero tolerance policy on "weapons".

This knife was had a 1 1/2 inch blade.

My nephew has a hard time with words like "weapons". To him, a weapon is a rifle, machete, a hand gun...a pipe bomb.

He is very naive. Now, I know that pocket knife is considered a "weapon" by the fact it is a knife. Do I think you will take out a team of a Navy seals with it? Nope.

Had he had an EPI, he would not have had a paper trail of violent meltdowns, because he couldn't cope at school. They would have given him a space to retreat when things got overwhelming. No diagnosis, why should the teachers go the extra mile?

The school was building a case to get rid of him by third grade. His parents refused testing, so the school spun the blame on them, more or less saying they were raising an out of control violent beast. Bonus round is my nephew's special interest is WII and a lot of his art work was bloody bodies, tanks and carpet bombings. That is when the school threaten to call CPS.

I don't think Autism is a get out of jail card, but the whole situation was just so woefully mishandled.

My nephew brought the knife to practice carving at recess.

I asked the therapist what to tell my 6 year old son. She said not to tell him anything until the assessment is booked, but he overhead us talking and asked. So then she said to explain what Autism is and focus on all the good things about it. She has a powerpoint (different one for different ages) that shows them how it can be cool to have a different brain. It's important to emphasize its not bad, just different and many brilliant people are autistic. It can also help them understand why they do some things other kids don't, or why they find some things harder. Here its important to focus on that everything has things they are good and bad at and no one is perfect at everything, they have lots of things they are great at that other kids can't do.

If you feel you are already receiving what he needs in the way of resources and therapy, then a diagnosis may not add anything.

Personally I used diagnosis to work the system. We didn't have him formally assessed until late last year because the school that we thought was best for him to go to does not accept AS kids. They do however offer specialised programs for language disorders and social skills, and 1/3 of the kids there have dyspraxia so the teachers are very experienced at it. These were the things he needed the most help with at the time and the other things his AS affects were not yet needing to be worked on (like emotional regulation etc). However, his therapists have been treating him as though he was diagnosed since he was 2 and are all AS specialists. Now he is turning 7, changing schools (other school allows attendance for max 3 years), his needs are very different and now I believe we need a diagnosis to receive the appropriate support at the new school and also we get funding for therapy.

The purpose of diagnosis is getting the resources and support you need, if you're already getting it, then you don't have much reason to diagnose, unless maybe to get into a school or something like us.

I figured it out for myself fairly soon. I noticed that I was different from the other kids around the age of 6, by the age of 8 I knew I had autism and fully understood the consequences it would have in the near future and from adulthood onwards. My parents decided to tell me when I was 11 (they already knew when I was in kindergarten). I didn't blame them for not talking about it sooner, it's not easy after all. But the sooner the better really.

I can only advice you to try and get a diagnosis and be honest about it with him. I've learned that lying and hiding important information is an excellent way to ruin relationships forever. Either way he may be able to do just fine without any accommodations which is good. He has the option to never to tell anyone about his diagnosis and aspire a normal life, but having access to special services in case it's ever necessary is nice as a plan B, so to speak. More options is always better.

However, never ever arrange a group discussion in class about his autism, even without giving it a name. They did that to me and I agreed because I didn't know better at the time. I understand how in a perfect world that can sound like a good idea to NT people but this is reality and people are cruel. Children especially. There's no guarantee they will embrace him and in my case I found everyone avoiding me and losing the few friends I had. At least I got to go to high school a few years later and made new friends (and never told anyone openly about my diagnosis).