Advice on telling son he is autistic?

[Jcopy]

My son was recently diagnosed with autism at aged 9.

We're going to tell him but are not sure how best to do it and provide him with useful imformantion that is helpful but isn't too focused on the downsides and potential negative outcomes of being autistic.

While we were waiting for a diagnosis, we have been discussing neurodiversity in general, and autism has come up, so he is aware of it.

He also has autistic people in his school, but they require a lot of support from the school, whereas he doesn’t really. So I don’t think he relates to those children.

If it makes a difference, at his diagnosis, the psychiatrist said he’d have been diagnosed with Aspergers in the past but now it’s ASD.

Anyway, we are going to tell him, but I’m really nervous about it. Whenever I look online, the official pages also talk about it in quite severe and limiting terms. Such as struggling to get a job, anxiety, depression, etc.

I know it’s a disorder so don’t want to make light of it, but I’d rather just draw his attention to the positive or neutral “differences” of being autistic, at least to begin with.

He has a very inquisitive mind, so will want to know all about it, and while I’ve done a lot of reading, I find it hard to articulate what I’ve read. Plus, most of that is about the downsides of it, not the other sides.

I’ve being trying to find a factsheet I can print out that covers autism but without going too much into the downsides but haven’t managed to do so.

Any tips on explaining it to a child so that it’s a positive experience?

 

[AprilR]

I don't have any children and wasn't diagnosed at my childhood. But, if i was a parent i would think of what the Child is struggling with. If he is struggling with something like doing his homework, struggle to have friends, maybe you can explain that the reason he is struggling is bc his brain works different than others. So it is not his fault he sometimes struggles with these things other people can do.

Another important thing must be finding solutions to his problems now that you have some info. Information is power, and since you now know more about your child, you can help him and he can also help himself deal with life better.

Also, make him feel like you are always on his side, no matter what happens, and that he can share anything he wants with you.

That's how i would like to be treated when i was a child anyway.

 

[Raggamuffin]

As above - positive reinforcement when he's struggling perhaps, rather than a sit down meeting and some sort of announcement.

Also approach when you're less nervous. Nervous energy is something people pick up on. ASD can come with alexithymia in around 1 in 5 cases which is trouble identifying/understanding/describing emotions. But being around bad vibes/energy is off-putting universally I think. So get to a point where you're feeling more comfortable about it.

Ed

 

[Owliet]

My son was recently diagnosed with autism at aged 9.

We're going to tell him but are not sure how best to do it and provide him with useful imformantion that is helpful but isn't too focused on the downsides and potential negative outcomes of being autistic.

While we were waiting for a diagnosis, we have been discussing neurodiversity in general, and autism has come up, so he is aware of it.

He also has autistic people in his school, but they require a lot of support from the school, whereas he doesn’t really. So I don’t think he relates to those children.

If it makes a difference, at his diagnosis, the psychiatrist said he’d have been diagnosed with Aspergers in the past but now it’s ASD.

Anyway, we are going to tell him, but I’m really nervous about it. Whenever I look online, the official pages also talk about it in quite severe and limiting terms. Such as struggling to get a job, anxiety, depression, etc.

I know it’s a disorder so don’t want to make light of it, but I’d rather just draw his attention to the positive or neutral “differences” of being autistic, at least to begin with.

He has a very inquisitive mind, so will want to know all about it, and while I’ve done a lot of reading, I find it hard to articulate what I’ve read. Plus, most of that is about the downsides of it, not the other sides.

I’ve being trying to find a factsheet I can print out that covers autism but without going too much into the downsides but haven’t managed to do so.

Any tips on explaining it to a child so that it’s a positive experience?

I was diagnosed as a teenager. And I wish I had been told differently to how I was told. I was told in an argument, and it was made out to be very negative. You seem to be doing the best you can with already opening up discussions. I’d suggest that you continue to do this. If you can get the psych to support you and be there to help you explain it to him when the time comes. Use examples of people who have been successful and have used their ASD as a positive rather than focusing on negatives. If you need to, approach your SENCO (Special Educational Coordinator) at the school if you have one to see if they have any kid friendly resources for him to read.

 

[Richelle-H]

Not knowing more about your boy it would be difficult to say. Obviously, something moved you to get him into evaluation, be it emotional, behavioral, or something else. The thing with Asperger's is that no two of us with that diagnosis are alike. While we share traits, how those are expressed vary.

I will say that being diagnosed quite late (after40). I knew I was different from most everyone I met, but it did not bother me. My biggest peeve as a child, even at the age of seven, was being talked down to. The one informal evaluation I had at that age was that I had the reasoning powers of an adult, even then. I desperately wanted to be included in the adult conversations at family gatherings and hated being relegated to the children's table.

I can truthfully say that I never had much of a downside growing up. I was quiet, studious (although I hated the daily grind of the classroom), achieved grades that were good enough to be on the cusp of standing out. Many of those who wind up with an ASD1 diagnosis (Asperger's was rolled into this but I think Asperger's is a more descriptive designation) excel in life, so you should keep it focused, explaining that it is not a disease or a handicap on surface, how it presents depends on factors that are wildly unpredictable.

Keep it simple! Tell him that he has great opportunities ahead of him and that if he is feeling stressed, bored with school, called weird or strange by friends or schoolmates, that he should look at these incidents as just another learning experience. If you protect him too much, you risk making him dependent and that is the last thing you want to do. He is young and part of life is learning who you are and who you wish to be as you grow older. Encourage any special interests, even if they do not last. If you are able to get him interested in learning more about Asperger's, that might help. It's the socialization thing that can be, but not necessarily, a big stumbling block.

There are many famous people who have been diagnosed with Asperger's (formally or otherwise), here are a few:

• Courtney Love
• Dan Aykroyd
• Daryl Hannah
• Sir Anthony Hopkins
• Andy Warhol

Encourage and support anything he shows an interest in and always be open and honest with him. He may have trouble being the same with you, but if you set the example, then you may be surprised at what may happen. The big trouble area is the comorbid conditions (OCD. ADHD, etc.). Those tend to complicate matters if they are moderate to severe. I believe the more he knows and learns about himself the brighter his future becomes. I wish him well and future success in life.

 

[1ForAll]

I realize you and your wife may or may not have Autism, so a little of what I wrote below in another thread longer ago may not relate, but the rest of it would be my advice to you. Quoting now:

"My oldest 12-year year old Autistic son knows of his diagnosis but he sees it as something he is proud of and certainly not ashamed of, likely because he thinks I have the same condition too from telling him I likely have that as well, and as in his eyes he tells me I'm very cool as I never get upset much about anything and have a calm demeanor about mostly everything, even under duress, and as I let him do mostly anything within moderation or good reason.. He likes it that I treat him just as I'd do others, and I don't focus much on any quirks or difficulties, unless he has a need to be assisted there, and I don't compare him to others because of his condition.

"By me being very relaxed and accepting of who I am with a suspected Autism label, and nonchalant about Autism by not talking it about it much, unless on rarer occasion in a positive, neutral or modest way, and by me focusing on the positives in him, but not going overboard there, I think this gives him peace and pride knowing we don't see Autism in any concerning, negative or extreme way, but just more in a factual or healthy way and nothing at all to be worrying about. I mean, if we cannot change much there, what good is it to worry there? Focus on what we can do, when we can do it, and in the way we can do it. Focus on efforts, more so than results.

"This son does worry about my happiness though, with me taking on so much responsibility, especially taking care of my wife and youngest nonverbal one too, and as I don't show as much joy as him, but I tell him not to worry, as I am strong there and can handle mostly anything and see the good in mostly anything, telling him if I'm not worrying about it, he needs not either. He has an empathetic side like me too, but just focuses on his efforts. Again, we let him do most things he loves if reasonable, without being too strict there, but with constructive teachings when he does wrong, too, done so in logical and good communication ways that he understands the best.

"So, in general, what worked for us was to try to be a good role model for him, and to make him see Autism in more a positive, neutral and factual way depending on what needed to be said those times. As well, by supporting him those times he needed such, and by being more understanding, accepting, respectful and/or appreciative of those unchangeable or more ingrained things because of his Autism, but which just made him-him, I think overall this helped our son have a great attitude about the Autism in him, and with him not thinking about it too much. Of course there will be difficulties he has related to the Autism, but he just focuses on accepting certain things or trying his best.

"Each parent though will have their own ways to handle the diagnoses and the great, good, neutral, and any concerns with that (and how to tell their children, if they do so, and when.) Each situation will be different, as each situation has different factors. I just wanted to give our perspective but respecting and seeing the good in other ways of handling such things too."

 

[Magna]

@Jcopy Are either of you autistic as well?

I have Aspergers and one of our children does as well. He was diagnosed around the same age as your son. Here's how we told him:

We told him that not everyone's brains are the same and therefore people can think about and understand the world in different ways. One way isn't better than the other...just different. Sometimes thinking about things differently means a person can discover things in ways that no one else has thought of before like famous scientists, inventors, etc. One of the richest if not the richest man in the world right now (Elon Musk) has Aspergers. We told him that the way his brain is created as well as many other people like him (and me) means that our way of seeing the world is different than a lot of other people. That can be a great thing (scientists, etc) but it can also mean that some things can be more challenging for us when we go through life. Temple Grandin considers autistics to be "different but not less". I agree with her. We have not dwelled on it since.

Notice NONE of what I said above is negative, defeatist, sad, "bad news" or any such thing. We didn't even reference the word "disorder" or disability.

I hope that helps.

 

[Neonatal RRT]

From a parent's learning perspective, please know that much of what we thought we knew about autism has changed within the past 5-10 years. Prior the 2010's, the predominant literature was from a psychological perspective, and since that time, we have learned a tremendous amount about the autistic brain from a genetic, biochemical, anatomical, and physiological perspective. The "wind" seems to be changing the discussion away from a psychological model to more towards a medical model. In other words, the "core" psychology and psychiatric components of autism are appearing secondary to the anatomy, physiology, and genetics.

Now, from a child's perspective, what many us suffer from is an upbringing that did not support these ideas. We were branded with a "moral diagnosis" that was not deserved. We were taken advantage of because we were easy victims due to our lack of understanding of perspective taking (mind blindness). We were teased and made fun of because of our "quirky behaviors". People falsely accused us of being stupid because we didn't learn in the same ways as other kids. Some of us grew up with people that just were ignorant and toxic towards us. There's a lot of emotional and psychiatric "baggage" due to that.

So, as a loving parent, be aware that there are some things that are easily learned, some things that can be learned with work, and there are some things that never will be learned. What those are is highly individualized. Furthermore, a traditional school environment is often not the ideal. The combination of sensory issues, behavioral issues, communication issues, socializing issues, and a neurodivergent-type of thinking is often in conflict with large groups of children, noisy, rude, teasing, bullying, and then teachers who are required to cram a curriculum into a child's brain in a method that suits neurotypicals, and not autistics.

You may find that your autistic child loves to learn visually and by touching, hands on, etc. Most do not do well with sitting down, reading a book, alone, but rather doing the activities and applying the learning right away is most helpful. My father taught me woodworking, auto mechanics, electrical work. My grandfather taught me gardening and machining. My parents had us doing the lawn, washing our clothes, cleaning the house, working, earning money, balancing a checkbook, etc. I grew up doing things, touching, tearing things apart, observing, etc. Don't just learn about science and math, but rather do science and math. Whenever a "lab experiment" can be created, do it. Parents, in general, have a horrible habit of holding their children back. "He's just a child" mentality will only create unwanted delays. If you are there to oversee and guide, even a small child can do very advanced-level activities.

As a child, I am not sure if "taking a deep dive" into all things autism is necessarily helpful, but perhaps a bit of "spoon feeding" of information may be better received. Meanwhile, as a parent, understanding the medical model and the psychological model will help with understanding your son.

 

[UberScout]

Tell him he has a gift unlike anybody else has.

 

[Slime_Punk]

Does he know anyone with ASD? Admire any celebrities or personalities that are speculated to have ASD?

I'd just rope in cool and influential people and be like, "Elon Musk has it... Bill Gates might even have it (not that we'll ever know for sure)... and you know Joe from school? He has it too!"

Although to be fair, this would be easy for me, because I could go with the line "Dad has it too!"

 

[Storm Hess]

Love and support are the most important. My opinion, maybe wait till he asks about it.

 

[Outdated]

I know it’s a disorder so don’t want to make light of it, but I’d rather just draw his attention to the positive or neutral “differences” of being autistic, at least to begin with.

I always disagreed with the term Disorder. I'm high functioning ASD2, we didn't know anything about autism when I was growing up but I certainly knew I was different to everyone else, and as far as I was concerned it was everyone else that had a disorder. I always liked who I was and what I was capable of and was very proud of myself.

As a kid I always believed that the reason other kids picked on me was because they were jealous and felt threatened by my mental abilities. Even today I still believe that's true.

I would suggest playing on the advantages that he has. We do tend to suffer social issues throughout our lives and having a rock solid ego is necessary, it's the most important tool he can have to prevent the rest of the world from trying to beat him down.

 

[Ronald Zeeman]

I always knew i was brighter than most even at a young age, never doubted myself. Only my family were my equals.

 

[George Newman]

He needs to know that Autism isn’t what he has. Autism is part of who he is. He should always be proud of who he is. Autism isn’t a crutch. Autism just is.

 

[Hypnalis]

@Jcopy

Some of your post and of the answers here concern me a little.

Yours: what I reacted to most was "explaining it ... so that it’s a positive experience".
Paradoxically that might be achievable, but almost certainly not if it's set as an objective.

Other posts: being diagnosed doesn't mean he's blessed/gifted/one of a number of exceptionable people.
He is who he is, and now you have some helpful information. It's very unlikely you understand it yet though, so your first priority should be understanding the difference between Aspies and NT's. I can 100% assure you that you don't currently have that understanding

He doesn't have any useful information yet. He's far too young and inexperienced to contextualize an ASD diagnosis.

When you have definitely understood the ND/NT gap as it applies to your son it, you'll be ready to discuss it with him.

TBH I'm not sure you and I will ever communicate again, but even so, here's some potentially useful input:

"Aspies" are (more or less) defined as people with ASD traits, but no deficit in verbal communication. We can be intelligent, capable in many domains, and able to socialize normally with NT's in non-hostile environments.

There can be many difficulties, but the main one that's "just Aspie" is a deficit in non-verbal communication, and also in the non-literal aspects of verbal communication ('reading/interpreting "between the lines"'). These in turn constrain social skills. The issues with social skills are what smart Aspies seem to regret when looking back.

AFAIK nobody teaches those, but they can definitely be learned.

 

[Au Naturel]

Why bother telling? Just get him any help he might need. As pointed out, he is too young to understand the situation's complexities.

Would you tell him he was gay? Would you tell him he was trans? Or would it be something that is self-evident to him once he was able to understand the complexities?

 

[Rodafina]

Why bother telling? Just get him the care he needs.

Would you tell him he was gay? Would you tell him he was trans?

Interesting… makes me wonder.

Maybe… as long as his needs are being addressed with parental understanding of autism.

 

[330]

Some of the misinformation is concerning to me on this thread .

Asperger syndrome (AS) is a subtype of Autism Spectrum Disorder (ASD) characterized by major problems in social and nonverbal communication, together with limited and repetitive forms of behavior and interests.

 

[Ronald Zeeman]

It depends where he is on the spectrum main body or tail of distribution.

 

[Ronald Zeeman]

I agree “Disorder” is a wrong term.
As mentioned by many on here .

As a parent it would be best to read books about Autism written by Autistic people . There are many available to give you more of a human element to some of the struggles , instead of all the clinical information which usually focuses on the negative .

Autistic books by -Temple Grandin,
John Elder Robison are a few that come to mind . I would read as much as possible from the autistic perspective first . And then proceed with a plan to tell him.

My suggestion would be to focus on positives and point out many famous scientists and musicians artists, actors , writers etc that are on the spectrum

• Dan Aykroyd – Comedic Actor
• Hans Christian Andersen – Children’s Author
• Benjamin Banneker – African American almanac author, surveyor, naturalist, and farmer
• Susan Boyle – Singer
• Tim Burton – Movie Director
• Lewis Carroll – Author of “Alice in Wonderland”
• Henry Cavendish – Scientist
• Charles Darwin – Naturalist, Geologist, and Biologist
• Emily Dickinson – Poet
• Paul Dirac – Physicist
• Albert Einstein – Scientist & Mathematician
• Bobby Fischer – Chess Grandmaster
• Bill Gates – Co-founder of the Microsoft Corporation
• Temple Grandin – Animal Scientist
• Daryl Hannah – Actress & Environmental Activist
• Thomas Jefferson – Early American Politician
• Steve Jobs – Former CEO of Apple
• James Joyce – Author of “Ulysses”
• Alfred Kinsey – Sexologist & Biologist
• Stanley Kubrick – Film Director
• Barbara McClintock – Scientist and Cytogeneticist
• Michelangelo – Sculptor, Painter, Architect, Poet
• Wolfgang Amadeus Mozart – Classical Composer
• Sir Isaac Newton – Mathematician, Astronomer, & Physicist
• Beethoven- Composer
• Satoshi Tajiri – Creator of Nintendo’s Pokémon
• Nikola Tesla – Inventor
• Andy Warhol – Artist
• Ludwig Wittgenstein – Philosopher
• William Butler Yeats – Poet

Just to name a few .It’s is very important to let him know he has a different brain type . This is something that does not need to be cured. Whatever he finds great interest in no matter how different or strange it will seem to you , as long as it is not harmful to anyone or himself, nurture this and support him to progress in them. It will help him with this anxieties tremendously. And make your life as parents easier , and his existence happy and productive.

And be the best parent you can be by helping with love and patience with social deficits and anxieties .

Everyone on the spectrum is different. But we all have similarities as well .

When I was a child Asperger’s was not well known , Due to the lack of education and understanding. Lots of things I have gone through because of adults , Teachers ,Doctors , Parents , Peers etc , has filled me with a childhood full of pain and isolation.


You have a great advantage today . With all of the science and data .And the fact you are here asking us is a wonderful sign.

Let him know slowly in stages with positive aspects first . Once this is understood. Then help him understand some areas he may need help in .

I hope this helps .

Nice list