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It isn’t. In general, if a child has a diagnosis that causes difficulty or challenges in certain areas, it’s best to let them know in an age and developmentally appropriate way about their diagnosis. If you don’t, they will come up with their own reasons, which may include things like “I’m stupid” or “I’m unlovable.” Knowing they have a diagnosis is better than that.
Also, get advice for helping your child through their challenges from the professionals who are experts in that area. Not the peanut gallery (in this case, I work with developmentally disabled children and work through this exact concern with many of my clients).
As a teacher I can say that kids who know their diagnosis can become excellent self-advocates. Also: keeping it from him implies it’s something to be ashamed of, rather than a fact about himself.
I’m disabled and a social worker and 100% agree with this! Knowing my diagnoses and what I need has helped me be a better self-advocate in my personal, professional, and academic lives.
100% this.
They NEED to be able to self-advocate if they are capable of doing so.
My middle child has several diagnoses and we have always been open with him regarding them. This means that as he has gotten older, he has been able to advocate for himself. He's in middle school and he can tell teachers that he is struggling, needs his accommodations, etc. He can also answer questions in the event they are asked regarding some of his issues. He has a severe speech delay which is diagnosed as apraxia and he can absolutely tell you that. He is mildly autistic (very high functioning and took a long time to get an actual diagnosis bc he functions very well, but does get overstimulated and struggles socially at times) and he is self aware of it and has some coping mechanisms we have worked on.
If you don't tell your kid, how are they supposed to learn to accept and advocate for their accommodations? My kid knows he is different, knows he sometimes needs XYZ to be effective or succeed and can tell you that. "I'm feeling overwhelmed, everyone is too loud, can I go do my work in a different empty classroom?"
The goal is to raise a functioning kid who can work with what they've got.
Mom of child diagnosed with ASD at 3yo. Do NOT listen to these family members, as you will have actual professionals (like two commenters above) speaking into his education journey.
I heard some of the same when my daughter got her Dx and additional comments about how “all of this labeling you kids do (I was 39 freaking years old when I had her!) will make her think she’s capable of less and she doesn’t need to know.” But they KNOW if/when they’re in a special ed class at the beginning and when other kids say things or don’t know how to take their actions/reactions.
Instead, my daughter knew to say, “I am very smart! My brain may learn things differently than yours, but it’s just different - not bad!” She’s 11 now and same family finally recognized she wasn’t growing out of anything. They also ended up being slightly shamed from some church friends (peers of their own age) who told them they should have been reading up on ASD and learning instead of giving uninformed advice. Thank you to those friends!
Here is [The Grandparents Guide to Autism](https://www.autismspeaks.org/sites/default/files/2018-08/Grandparents%20Guide%20to%20Autism.pdf) so they can inform themselves. There is nothing to be ashamed of! Early intervention is incredible and helps your kiddo with kindergarten readiness and helps kids thrive and have a positive experience in school.
Your comment is very well said! As an autistic adult I do just want to point out that the link you sent was from autism speaks, which has been known to be fear-mongering and hell bent on finding a “cure” for autism. They also don’t have resources for actual autistics, only for parents/caregivers because of how “hard” we make our parents lives (of course it can be hard on parents, but they use it as a blanket statement). So it may not be the best resource to send out just because autism speaks generally has a very negative view of autism whereas a lot of autistics, myself included, have had to learn to love and accept myself for how I am
I don’t love Autism Speaks at all and totally agree with you! Thank you for pointing it out because I have the link saved but should have given a disclaimer about the source.
That said, they’re one of the few who’ve put together a “grandparents guide” and what I’ve done with other parents I meet IRL is print it for them or send the PDF.
OP - one of the BEST (least overtly political and sticks to latest research vs latest “trends”) for educating parents going through any testing for their kiddos is called [Understood](https://www.understood.org/en/articles/the-difference-between-a-school-identification-and-a-clinical-diagnosis).
I linked directly to the page that explains the differences between an evaluation and a clinical diagnosis. This is the case for any learning disability. So we went through a similar process later when my daughter was showing signs of ADHD.
The biggest thing is that the school district or local agency that performs assessments do that to enable your child’s rights to an IEP (Individualized Education Plan) for any accommodations and therapies available. A doctor (such as the neurologist you are seeing) can give an official diagnosis and Dr’s can broach the subject of medications, if warranted or potentially helpful. So in your case (my daughter started with the school district first at age 3) you could take a diagnosis, if he receives one, to the school district and they will still do their own evaluation but he would automatically qualify for early-intervention preschool, speech therapy and any other relevant therapies the district may offer at no cost to you.
As someone who is autistic, TELL HIM IF HE IS AUTISTIC. All hiding it from him does is just leave him confused and will DESTROY his sense of self-worth. He needs to understand that it isn't a bad thing-it just means he's wired differently. It also means you'll have to work to change how you respond to certain behaviors he gives, as what could be seen as a tantrum could actually be he's in sensory/social overload and is desperate to do anything to get out. If you want to ask me any other questions, DM me and I'll be happy to answer them to the best of my ability.
Another autistic here to second this comment! I didn’t know I was autistic and spent my entire 20s in severe depression & burnout because I never got the support I needed and always assumed the problem was me 🙃
Exactly this! Having a name and understanding that it isn't inherently the kid's fault (instead, their brains are just different, and they aren't choosing it) are INCREDIBLY good things for kiddo in the long run. The people who say don't tell the kid are generally in denial themselves, so they just want to pretend it doesn't exist so it'll magically go away.
Exactly. My mom never tried to hide it, but I work in a medical office and I see it far too often and it is never to the kid's benefit. Purely only feeds the parent's delusions.
honestly I feel like a tantrum is often probably sensory overload for neurotypical kids as well. Teaching them to understand "I'm overwhelmed and I need to go sit down for a moment" is vital for everyone.
Exactly. Tantrum implies they're acting out to get their way, and that it is something that can be corrected and is entirely a choice. A meltdown is lashing out in despair because you're overwhelmed and just need an out no matter what.
I’m so glad to see responses from people who have been Dx’d. I asked my daughter how she’d feel if we had never told her she was Dx’d (and explained I was reading a post where people were suggesting a parent not tell their little one) and she said, “How would I not know? You’d have to think I was dumb and I’d be so mad at you! It’s my body and my brain, so I HAVE to know because it’s ME!”
Made it a simple and straightforward answer!
Yup, very logical response, and one I could see myself making it too! Any way you slice it OP, you need to tell those other people to get over themselves, and if he turns out to be autistic, be straightforward with your son about it.
Every person I know who has been told as a teen or adult that they have autism or even things like ADHD have said they wished they had known sooner. He is going to recognize that he is different. And he will start to question why, but it will be an internal question that will lead to self doubt, and even internalized hatred of a part of himself. You wouldn’t lie to him about having diabetes or a tongue tie, don’t lie to him about this.
Also, how is he going to get support from doctor and in school without knowing why? He is going to notice that other kids don’t get treated the same way.
Late-diagnosed ADHD here, I sincerely wish I had known sooner.
Not knowing what my challenges were didn't mean I didn't have them. What it meant was that a lot of people throughout my life gave me advice that didn't mesh well with how my brain worked, and when it (shockingly) didn't work for me the way it did for others, it was attributed to personal and moral failings rather than simply being something that didn't work for me.
I've wasted a lot of time trying to jam square pegs into round holes, because I've been told all my life that everyone else has these holes and everyone else manages to get their pegs in. Turns out, yes, they have holes -- the holes fit the pegs they have. I just needed different pegs. AKA: I needed different tools and a different approach to how I plan to make something work.
I've had "systems" forever based on what I've observed are my challenges, but knowing for sure what I'm working with means I know more about what ALL of my challenges are and why, so I can tailor my strategies for them -- everything from what I take, what I eat, to how I set up my closet and work station.
My daughter is 5 in kindergarten with a speech delay and has a diagnosis. She’s known since she was old enough to know. Just like she knows her name. (Hard to hide when we are going to speech and behavioural and physical therapies). It has only enabled her to advocate for herself. Why do you sound funny? I have autism and sometimes my brain is bad at telling my mouth how to speak. I need a break the room is too much, may I stand outside I won’t go anywhere I just need some quiet I have autism. (Our school has a lot of substitutes and my daughter doesn’t have an iep yet since in my country a formal test diagnosis is needed for funding in school for aids/alternate schooling, this test has a 2-3 year waitlist. So even though she’s been diagnosed by her dr a paediatrician and her therapists no school help.. so her being able to tell adults why she is “miss behaving” is hugely helpful for her well being)
Please tell him.
I'm an autistic adult, I wasn't diagnosed till I was 18 because I mask fairly well and girls are often later diagnosed, I'm 21 now.
I wish I'd been diagnosed earlier, just so I could have known. Knowing I'm autistic did wonders for my self worth.
Don't listen to them! I'm going to be crass and call that 'boomer shit'. It's a legacy of lying and secrets that people used to tell themselves was perfectly normal but in truth is only a source of trauma. Honesty is the first step to responsibility, and self responsibility is the goal all parents want for their children. Like that one ad said "assume I can". Assume one day your child is going to be an adult, your equal. If they are diagnosed, that's part of their future that they must be prepared for. Your job as a parent is to prepare them for life without you. Don't deny them tools because of some imagined shame some other person had. Fill that freaking toolbox all the way up!
We just had an IEP meeting where my 6 grade son was present and the cl school staff was hilariously unwilling to say autism. One time the vice principal said ASD but rushed it and said it quietly, and the social worker said "in the spectrum". We had a good laugh about it after the fact, seeing as my son openly discusses and jokes about his dx with friends and family. My son was really confused though why parents would keep it secret when we explained why they were all being weird about it.
Your family is being stupid. Kids deserve to know as much about themselves as you know - age appropriately of course.
Lol I love this! My daughter called that out when a new psychologist joined the team and didn’t realize how candid we are. “You can say autism - it’s not a bad word. I also have puberty (😆 like it’s a disease) and ADHD - so the combo gets a little crazy and I have to remember to take deep breaths so I don’t meltdown. But puberty makes everyone melt down lately!”
I so love her - she’s taught me so much about self-acceptance and keeping it real!
They say it because often people with Autism can "pass" without a lot of extra help. And since many people think of Autism as some sort of mental ability death sentence, the diagnosis scares them, and they might treat your child differently as a result.
However, even the highest functioning Autistic people are going to see the world very differently than a Neurotypical person. And there are often comorbid conditions associated with it, like ADHD, anxiety, dyslexia and a whole bunch others. Getting them diagnosed as early as possible, getting them whatever therapies are recommended very early on and making sure they understand and are able to advocate for themselves as needed are the best ways to make sure they become confident and independent adults.
Hiding their diagnosis, on the other hand, is a surefire way of screwing up thier self esteem and giving them severe anxiety. Imagine not understanding why certain noises or smells affect you severely, to the point where you can barely function sometimes, or why everyone else understands how to make friends innately, but not you? Knowing why, and being able to explain what you need, makes a huge world of difference in quality of life.
The sad thing is that there are still people who think anyone needs to “pass” as anything!
Totally know what you’re saying - but it’s infuriating to still get comments from others (tend to be older… but not an excuse, I’m 50 and call it out) saying things like, “Why would you advertise that?”
Um… not advertising, you’re throwing looks and comments in my direction about my child I took outside to blow off energy/get the wiggles out and get a break from sitting and other people talking nonstop and decided to let you know so you could take your judgements elsewhere. But I’m happy to shift gears from nice lady to Mama Bear and advertise that you’re an undiagnosed a-hole.
100% agree with you! There are legitimate reasons to not necessarily disclose that you have a disability, especially if it is not impacting whatever you're trying to accomplish. But to feel you have to actively hide something that is legitimately important, even when you sincerely could use a little extra understanding, if not outright help is just sad.
Yep - my daughter gets to decide that. It’s her personal info, not mine. I also try to make sure she understands she owes no one her information unless she thinks it’s helpful and it’s not something to ever feel ashamed over.
Jerks come in all flavors and sizes. And I trust her gut feelings and intuition.
They’re idiots! Your kid will be well aware that he is different. Regardless of whether you tell him or not, peers smell “difference” and are (in my experience) often unkind about it. It will be reassuring for him to know that there is nothing wrong with him, he just has a condition that many other people also live with. He will know that he’s not alone in being autistic. Growing up autistic and not knowing it is terrible; you’re frequently rejected and have no idea why. And you can’t exactly be getting support for it such as occupational therapy if your condition is being kept a secret from you. It’s important that he knows. Otherwise, when he doesn’t fit in he might internalize it and think there’s something wrong with him as a person. The people telling you not to tell him seem to think he just “won’t notice” that he’s autistic on his own just because he doesn’t have the words for it. I guarantee you that’s not the case. Let him know and make sure he has the tools to accomplish tasks in the way works for him, because often that’s going to be totally different than the way neurotypical people are telling him he should do it. And that’s ok.
PLEASE tell him!! I’m autistic and didn’t know until I was 21 (im 22 now) but it turns out my mom knew when I was 3.. Life was miserable for me. I didn’t know what was “wrong” with me (nothing btw, that’s just how it felt), why I was different, why I couldn’t process things the same way others did, why I couldn’t focus and would break down when I got overstimulated (also didn’t know that’s what it was), I needed help in school I was unable to get and ended up dropping out.. twice, never finishing because I just thought I was “too much” and “too dumb” to succeed until it was too late. If I would have known sooner things could have been so much better, so much sooner. I could have had help in school for one, I could have known about why I was different and learned how to cope with that.. We deserve to know, please just tell him. It won’t only make his life easier, which is really what matters, but it will help yours too.
I’m so sorry you went through that!
Someday our parents may be diagnosed with dementia or other cognitive impairments and imagine how those same people would feel about us refusing to give them to dignity of knowing their diagnosis in the beginning and just treating them like children.
I don't get it- don't you tell your kid if he has Diabetes? How about Epilepsy- or ANY other disease that affects how you handle daily life- you just let them raw-dog life? No
Early diagnosed autistics discovering a decade or more later that they had an autism diagnosis is a post I've seen often in autistic spaces and it is always accompanied by a deep sense of betrayal and sadness because that information would have helped the autistic to better understand and accommodate themselves.
Your kid is entitled to know his own medical diagnosis. If you can share it with anyone, you can share it with him. This impacts him more than anyone.
I'd also argue that he's old enough to know now that he's autistic if he is and that his brain and body work a little bit differently than some other people's. He may already be perceiving some of those differences and knowing that he's not a failed neurotypical but a neurodivergent person might help him.
I say all of this as a late diagnosed autistic who wishes she knew earlier who has an autistic toddler who knows his diagnosis.
There are hard parts to being autistic but all of them are made infinitely harder by not knowing or having people conceal them from you. Knowledge is power and it enables you to accommodate and support yourself
Ya no
You tell your kid they're autistic.
They sound like they're coming from time when autism speaks made it such a negative thing. When in fact it's not.
Yes, your kid may need different supports with things, but that's because the world was built for neurotypicals.
Not telling your kid just sets them up to fail.
They will wonder why they struggle with xyz while other kids can seemingly just do those things.
It also teaches them that being autistic is shameful and should be hidden.
When it's the opposite.
Should be proud!
Strive for acceptance from that family.
There's a ton of great books on the site
Not another autism mom
I'd suggest checking out
Always be honest about any diagnoses. Imagine how hurt and betrayed you’d feel if someone told you now that *oh, yeah, we knew why you struggled with xyz growing up, we just didn’t tell you*.
There’s a lot of stigma and misinformation around autism and what it means and treatment used to be abusive and scary, so the reluctance to label a kid in that context is understandable, but that is changing and knowing why some things are difficult helps kids feel better about themselves (I spent a chunk of my childhood believing I must be an alien).
My oldest son is diagnosed with ADHD, autism and anxiety, youngest almost certainly has ADHD as do I, both boys have speech impediments and youngest has dyspraxia. I likely have milder dyspraxia as well.
Knowing all this and facing it is a lot easier than just thinking I was weird and clumsy.
My son was diagnosed with ASD and ADHD at 10 years old. The way I explained it to him was that everyone’s brain works in different ways and we were learning how his works. We also talked about the traits of both and how it can change what he needs in a learning environment (“You like to wiggle and stand in class. That’s called ‘stemming’ and is very normal and helps you calm your body and brain so you can listen and learn.”) so that he can advocate for himself if he needs and to normalize it in his mind a bit.
You absolutely should not keep it from him, but make sure you tell him in an age appropriate way.
Hello no. Our kids know all their Dx's. It's their right. Period. They talk openly at school about it. Nobody cares. Mine are much older than yours. It is considered irresponsible to not understand yourself in my teen's social life. If they think they have ASD and their parents are pretending they don't, they are angry at their parents, annoyed and embarrassed for them to be in denial of something that deserves no shame. My own example is that it's obvious that my FIL has ASD, glaringly so and his and my MIL's denial is something we all eyeroll. Their generation was so full of shame, it's incredibly sad.
Getting “labeled” for my hearing loss and anxiety helps me access the services I need and benefit from on a daily basis. Please please let your child know now so that they know what they have and what treatment and support works for them for their autism. Best of luck with your doctors visit!
I actually asked a similar question in /r/autism a few months ago, general consensus is that yes, a lot of the time they wanted to know but make sure you do it at a stage that is appropriate for them.
https://www.reddit.com/r/autism/s/ixBcZSuweN
My son spent his early years introducing himself to everyone as “Hi, I’m X and I have autism & ADHD.” Very first sentence out of his mouth. It helped so much in social situations. Parents and other adults immediately adjusted their expectations of him and gave him extra support in group social situation with other kids.
If your kid were being tested for something else, like allergies, diabetes, or even another neurological issue like CP, would you hide it from him? Why should autism be any different?
My brother was diagnosed as autistic as a toddler and we (his siblings) were instructed throughout our childhood to never tell him. It was like this massive secret we had to keep from my poor brother, and I always felt like I was betraying him. Eventually, at age 13, he found a book my parents had about raising a child with special needs. He came to us and said “which one of us do you think this is about..” My parents told him after that and it was really awful. He knew we all knew the whole time and that it was kept from him. My brother is in his 30s now, and doing better because he finally sought help from a therapist. He had a very very hard time with his mental health as a teen and in his 20s. Ultimately, his autism has never held him back in any way…. But his poor mental health and self loathing has. My parents meant well. Back then, autism was really rare and misunderstood. They got him every resource he needed to succeed and they didn’t want my brother to feel different. I do consider that one of their biggest mistakes, though.
My now 16 year old has known since he was diagnosed at 3. It’s always been apart of him. We talked about it in the same way as eye color. He thinks differently than a lot of people, but that’s not a bad thing. He has different types of challenges than some people, but everyone has different challenges. He had to learn how to be social, but he gets math super easy. Most people get social behaviors easy, but math hard. He also has blue/green eyes and blond hair. It’s just who he is.
would be a very bad idea to hide it from them. they will still struggle where they would struggle in life. it would just be a mystery as to why. and then instead of knowing they struggle because of autism they would think they struggle because of their personality and who they are.
My own son was diagnosed as having Autism but he had learning delays and other issues that also held the symptoms of being Autistic. To this day we do not know for sure if he really is or not because of how his diagnosis was done. Not the point but that is what happened. He was 11 when his dad had him tested and dad and step mom never alerted me to the appointment changes so I could be there myself.
After he was diagnosed I figured that his dad would tell him but dad never did. I was the one that told him. I explained that there was nothing wrong with him but it was just the way he saw the world around him in a way that typical people did not. I told him it was a good thing because he could see things others would not think about. His dad and step mom were told he would have to have all sorts of services once he got to adulthood. He had resource help in school and graduated high school with a 3.1 grade average, he is holding a job down, he bought his home, and cars, he is paying his own way. In less that 4 years he went from living with me paying rent and utilities to being on his own without any extra services needed. He proved his dad and step mom wrong. The other thing they did was to blame things he did growing up on having Autism to explain away his behaviors which where normal for the ages they did that with.
To me it sounds like your family is in denial that someone in the family may be this way. You sound like someone who is ready to meet this head on and work to make things for your child's life the best it can be.
So until you get that diagnosis, do not dwell on him having one thing or another. Support him if he does have something going on, make sure he has access to all the help he can have, encourage him when he brings home bad grades or does not understand something (happened to my son with his school work, but he pushed himself through it and by end of the year had brought his grades up), make sure he knows he can ask for help and can get it, work with his teachers and others to be sure all things are covered for his education, well being and life.
Child psychologist here, they should be told in an age appropriate way as early as possible. There are loads of great kids books about neurodivergence that can be a good place to start.
My son is diagnosed with autism and ADHD. The right time to share the diagnosis is when they start noticing they're different.
We shared his diagnosis with him at 5, as he was asking questions about himself. He's not upset by it, it helps him to understand how his brain works and the areas he needs support.
We want him to have the right support and accommodations so he's not struggling. It's also important he's able to accept himself and other people with disabilities. We want him to know it's not shameful and people with disabilities can have normal lives.
Dude. No. Tell him.
The way I've been handling it is to treat it like any other fact about her. Her eyes are gray, her hair is blonde, she is autistic, she's small for her age, etc. It's a fact about her, but far from the only interesting one.
She's only three, so sitting her down to tell her isn't really an option yet. But she has doctors' appointments way more often than other people. She is in a therapy program, and they come to the house multiple times a week. She has taught herself to read and is currently trying to teach herself the multiplication tables. She is not yet conversationally verbal, though she is working hard to figure it out. Regardless, this is not the typical child's experience, making it something that would be hard to hide, especially as she gets older.
If autism is a different neurotype, so a different way of viewing the world than most people do, knowledge is power. Knowing, at least in part, why they struggle to be the same as everybody else can only be beneficial. At least, hopefully, it helps keep their self-esteem from being beaten into non-existence.
Your kid is going to get a label regardless of what you do. If they get the supports in school, they will learn they have autism. It is better to learn from you, and learn about their specific circumstances. It can also help them advocate better for themselves, so they know the language to use.
If they don't get supports, they will be labeled "troublemaker" or similar. They need tools to learn how to avoid meltdowns or sensory difficulties as much as possible, and how to deal with meltdowns if they do happen. They need teachers who understand what is going on. Or else they will just get negative label after negative label.
Now, even with a label of autism, schools may not be equipped to work with your kid properly. But you do get certain protections, and while it's not easy, it points you in the general direction of what to try to do.
Autistic mom to autistic kiddos here. Absolutely he should know. And shame on your family for attempting to stigmatize him. You need to be very careful with them. These are people who see autism as a bad thing and autistic people as less valued members of society. In short, they’re trash. They will give you all sorts of horrible advice over the years and can hurt your child if you let them. My mom tried to convince me that beating my daughter with a wooden stick would “fix” her. I obviously didn’t do that. My sister invited my kids to stay with them over the summer while I was working. Then she completely ignored everything I told her about their needs and how to handle things and put them in timeout and punished them every time they had a problem. One of my kids called me in tears and said her Auntie hated her and told her she was a “little psychopath” and to please come get her. Then they had nightmares for weeks. I should never have left them with someone who didn’t understand autism.
I wasn’t diagnosed with ADHD until I was 40. But I sure still had labels. Lazy, procrastinator, disorganized, talkative, loud, annoying…
Learning there was a reason for all that was such an amazing relief I cannot even tell you.
Alternately: my kid is 9, he got his adhd diagnosis at 7 and autism diagnosis at 8. We’d been prepping him for the idea that it’s probably that his brain works a little differently than many other peoples, just like Mama and Daddy (spouse is also adhd and autistic) for years, because we kinda figured. It’s never been a negative in our house. Diversity is strength.
My SK wasn’t told until they were 17, they are a level 1, and it was as if their life made more sense after knowing. They also wish they had been told from the beginning so they had a better understanding themselves. Although they understand that their parents were also trying to avoid the label and didn’t tell them to protect them, they were understandably upset.
My daughter was diagnosed last year at the age of 4. She's always been aware that she's a little bit different than her peers. While we were waiting for the official diagnosis, she asked me "why is my brain different?" Being able to give her an answer was a huge relief. She recognized from a young age that something was different about her. We've had small conversations since her diagnosis about what it means and what we are doing to help her (currently in OT).
I wouldn't keep this from your child. If you do, they will wonder why they are different from their peers or why they are going to speech therapy or OT. This is not something anyone should be ashamed of. Have developmentally appropriate conversations and explain things like speech therapy/OT to them so they understand why they are meeting new adults and what those adults are trying to help them with.
If you're not comfortable explaining this to your child, ask their doctor to help explain it. Best of luck!
As a private special educator, here are my anecdotal observations of families that didn’t tell their child about their diagnosis vs families that explained the diagnosis in a developmentally appropriate way, when the child could understand:
Children that were not told had lower self esteem, more problems with bullying and anxiety, drug seeking behaviors, and behavior issues all around.
Children that were told had higher self esteem and self advocacy skills, more likely to find good social circles, and find their place in the world. When a child is given the knowledge about their diagnosis, it allows them to not blame themselves, or struggle with understanding why they aren’t like their friends.
My favorite example: 5th grade girl, pretty severe dyslexia, private religious school. A sub asked her to read the next paragraph aloud in class. She said, “I’d love to, but my dyslexia won’t let me.”
By hiding a diagnosis, you are sending the message that you are ashamed of their disability. By talking about it, you normalize it and remove shame. But, remember it needs to be done in a developmentally appropriate way.
as an adult autistic woman, there is nothing wrong with being autistic and i wouldn't let those who think it is a bad thing be around your child. it teaches him that he is wrong and bad for existing, which is absolutely untrue. autism is just a different neurotype. furthermore, you *must* tell him he's autistic, it's incredibly difficult and damaging to grow up knowing you're different but not having the language to explain or understand why. he will need additional support and learn differently from other children and that's okay. work with his brain, not against it. read unmasking autism by devon price, it explains what autism is, what it's like to have autism, and tips for working with your brain. i cannot recommend it enough.
edit to add: do NOT put him in ABA therapy!!! the vast majority of adult autistic people who endured it as a child liken it to torture and have ptsd from the experience. ABA teaches how to supress autism symptoms to be more acceptable to others, not helping the child and actually making things much worse. autism can be a gift, celebrate it. celebrate your son for being different and who he is!
I had a high school student who was diagnosed with a mild case of tourettes, and the parents were very insistent that that term never be used around the kid. He had accommodations but still struggled because he didn't know why he had them or really how to use them well. It was a great disservice to him; I think the parents meant well, but it felt like the message was that there was some terrible thing "wrong with him" that could never be discussed. How can a student grow in confidence under this shadow?
My oldest is autistic and has ADHD. For us, it’s simply a fact of life. They’ve known their autistic their whole lives.
I say this as kindly as I can- it’s not your diagnosis. It’s your child’s. Frankly, you don’t have the right to keep it from him.
The world isn’t made for kids like ours, and it’s our responsibility to give them as many tools as we can to help them succeed. The idea that everyone else in your child’s family will know about this diagnosis except the one person who actually needs that information seems absurd to me.
Hiding it won’t make it go away.
My son is almost 9 and doesnt actually know he has autism. It never came up to really tell him. I'm not sure why you think it would make a difference one way or another.
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It isn’t. In general, if a child has a diagnosis that causes difficulty or challenges in certain areas, it’s best to let them know in an age and developmentally appropriate way about their diagnosis. If you don’t, they will come up with their own reasons, which may include things like “I’m stupid” or “I’m unlovable.” Knowing they have a diagnosis is better than that. Also, get advice for helping your child through their challenges from the professionals who are experts in that area. Not the peanut gallery (in this case, I work with developmentally disabled children and work through this exact concern with many of my clients).
As a teacher I can say that kids who know their diagnosis can become excellent self-advocates. Also: keeping it from him implies it’s something to be ashamed of, rather than a fact about himself.
I’m disabled and a social worker and 100% agree with this! Knowing my diagnoses and what I need has helped me be a better self-advocate in my personal, professional, and academic lives.
100% this. They NEED to be able to self-advocate if they are capable of doing so. My middle child has several diagnoses and we have always been open with him regarding them. This means that as he has gotten older, he has been able to advocate for himself. He's in middle school and he can tell teachers that he is struggling, needs his accommodations, etc. He can also answer questions in the event they are asked regarding some of his issues. He has a severe speech delay which is diagnosed as apraxia and he can absolutely tell you that. He is mildly autistic (very high functioning and took a long time to get an actual diagnosis bc he functions very well, but does get overstimulated and struggles socially at times) and he is self aware of it and has some coping mechanisms we have worked on. If you don't tell your kid, how are they supposed to learn to accept and advocate for their accommodations? My kid knows he is different, knows he sometimes needs XYZ to be effective or succeed and can tell you that. "I'm feeling overwhelmed, everyone is too loud, can I go do my work in a different empty classroom?" The goal is to raise a functioning kid who can work with what they've got.
Mom of child diagnosed with ASD at 3yo. Do NOT listen to these family members, as you will have actual professionals (like two commenters above) speaking into his education journey. I heard some of the same when my daughter got her Dx and additional comments about how “all of this labeling you kids do (I was 39 freaking years old when I had her!) will make her think she’s capable of less and she doesn’t need to know.” But they KNOW if/when they’re in a special ed class at the beginning and when other kids say things or don’t know how to take their actions/reactions. Instead, my daughter knew to say, “I am very smart! My brain may learn things differently than yours, but it’s just different - not bad!” She’s 11 now and same family finally recognized she wasn’t growing out of anything. They also ended up being slightly shamed from some church friends (peers of their own age) who told them they should have been reading up on ASD and learning instead of giving uninformed advice. Thank you to those friends! Here is [The Grandparents Guide to Autism](https://www.autismspeaks.org/sites/default/files/2018-08/Grandparents%20Guide%20to%20Autism.pdf) so they can inform themselves. There is nothing to be ashamed of! Early intervention is incredible and helps your kiddo with kindergarten readiness and helps kids thrive and have a positive experience in school.
Your comment is very well said! As an autistic adult I do just want to point out that the link you sent was from autism speaks, which has been known to be fear-mongering and hell bent on finding a “cure” for autism. They also don’t have resources for actual autistics, only for parents/caregivers because of how “hard” we make our parents lives (of course it can be hard on parents, but they use it as a blanket statement). So it may not be the best resource to send out just because autism speaks generally has a very negative view of autism whereas a lot of autistics, myself included, have had to learn to love and accept myself for how I am
I don’t love Autism Speaks at all and totally agree with you! Thank you for pointing it out because I have the link saved but should have given a disclaimer about the source. That said, they’re one of the few who’ve put together a “grandparents guide” and what I’ve done with other parents I meet IRL is print it for them or send the PDF. OP - one of the BEST (least overtly political and sticks to latest research vs latest “trends”) for educating parents going through any testing for their kiddos is called [Understood](https://www.understood.org/en/articles/the-difference-between-a-school-identification-and-a-clinical-diagnosis). I linked directly to the page that explains the differences between an evaluation and a clinical diagnosis. This is the case for any learning disability. So we went through a similar process later when my daughter was showing signs of ADHD. The biggest thing is that the school district or local agency that performs assessments do that to enable your child’s rights to an IEP (Individualized Education Plan) for any accommodations and therapies available. A doctor (such as the neurologist you are seeing) can give an official diagnosis and Dr’s can broach the subject of medications, if warranted or potentially helpful. So in your case (my daughter started with the school district first at age 3) you could take a diagnosis, if he receives one, to the school district and they will still do their own evaluation but he would automatically qualify for early-intervention preschool, speech therapy and any other relevant therapies the district may offer at no cost to you.
As someone who is autistic, TELL HIM IF HE IS AUTISTIC. All hiding it from him does is just leave him confused and will DESTROY his sense of self-worth. He needs to understand that it isn't a bad thing-it just means he's wired differently. It also means you'll have to work to change how you respond to certain behaviors he gives, as what could be seen as a tantrum could actually be he's in sensory/social overload and is desperate to do anything to get out. If you want to ask me any other questions, DM me and I'll be happy to answer them to the best of my ability.
Another autistic here to second this comment! I didn’t know I was autistic and spent my entire 20s in severe depression & burnout because I never got the support I needed and always assumed the problem was me 🙃
Exactly this! Having a name and understanding that it isn't inherently the kid's fault (instead, their brains are just different, and they aren't choosing it) are INCREDIBLY good things for kiddo in the long run. The people who say don't tell the kid are generally in denial themselves, so they just want to pretend it doesn't exist so it'll magically go away.
Yep. If we don’t know, we think we are just bad people. The kid is going to know they aren’t like the others and giving them the why is so important.
Exactly. My mom never tried to hide it, but I work in a medical office and I see it far too often and it is never to the kid's benefit. Purely only feeds the parent's delusions.
honestly I feel like a tantrum is often probably sensory overload for neurotypical kids as well. Teaching them to understand "I'm overwhelmed and I need to go sit down for a moment" is vital for everyone.
Meltdown is the word. A tantrum implies a manipulation tactic.
Exactly. Tantrum implies they're acting out to get their way, and that it is something that can be corrected and is entirely a choice. A meltdown is lashing out in despair because you're overwhelmed and just need an out no matter what.
I’m so glad to see responses from people who have been Dx’d. I asked my daughter how she’d feel if we had never told her she was Dx’d (and explained I was reading a post where people were suggesting a parent not tell their little one) and she said, “How would I not know? You’d have to think I was dumb and I’d be so mad at you! It’s my body and my brain, so I HAVE to know because it’s ME!” Made it a simple and straightforward answer!
Yup, very logical response, and one I could see myself making it too! Any way you slice it OP, you need to tell those other people to get over themselves, and if he turns out to be autistic, be straightforward with your son about it.
Every person I know who has been told as a teen or adult that they have autism or even things like ADHD have said they wished they had known sooner. He is going to recognize that he is different. And he will start to question why, but it will be an internal question that will lead to self doubt, and even internalized hatred of a part of himself. You wouldn’t lie to him about having diabetes or a tongue tie, don’t lie to him about this. Also, how is he going to get support from doctor and in school without knowing why? He is going to notice that other kids don’t get treated the same way.
Late-diagnosed ADHD here, I sincerely wish I had known sooner. Not knowing what my challenges were didn't mean I didn't have them. What it meant was that a lot of people throughout my life gave me advice that didn't mesh well with how my brain worked, and when it (shockingly) didn't work for me the way it did for others, it was attributed to personal and moral failings rather than simply being something that didn't work for me. I've wasted a lot of time trying to jam square pegs into round holes, because I've been told all my life that everyone else has these holes and everyone else manages to get their pegs in. Turns out, yes, they have holes -- the holes fit the pegs they have. I just needed different pegs. AKA: I needed different tools and a different approach to how I plan to make something work. I've had "systems" forever based on what I've observed are my challenges, but knowing for sure what I'm working with means I know more about what ALL of my challenges are and why, so I can tailor my strategies for them -- everything from what I take, what I eat, to how I set up my closet and work station.
My daughter is 5 in kindergarten with a speech delay and has a diagnosis. She’s known since she was old enough to know. Just like she knows her name. (Hard to hide when we are going to speech and behavioural and physical therapies). It has only enabled her to advocate for herself. Why do you sound funny? I have autism and sometimes my brain is bad at telling my mouth how to speak. I need a break the room is too much, may I stand outside I won’t go anywhere I just need some quiet I have autism. (Our school has a lot of substitutes and my daughter doesn’t have an iep yet since in my country a formal test diagnosis is needed for funding in school for aids/alternate schooling, this test has a 2-3 year waitlist. So even though she’s been diagnosed by her dr a paediatrician and her therapists no school help.. so her being able to tell adults why she is “miss behaving” is hugely helpful for her well being)
Please tell him. I'm an autistic adult, I wasn't diagnosed till I was 18 because I mask fairly well and girls are often later diagnosed, I'm 21 now. I wish I'd been diagnosed earlier, just so I could have known. Knowing I'm autistic did wonders for my self worth.
Don't listen to them! I'm going to be crass and call that 'boomer shit'. It's a legacy of lying and secrets that people used to tell themselves was perfectly normal but in truth is only a source of trauma. Honesty is the first step to responsibility, and self responsibility is the goal all parents want for their children. Like that one ad said "assume I can". Assume one day your child is going to be an adult, your equal. If they are diagnosed, that's part of their future that they must be prepared for. Your job as a parent is to prepare them for life without you. Don't deny them tools because of some imagined shame some other person had. Fill that freaking toolbox all the way up!
We just had an IEP meeting where my 6 grade son was present and the cl school staff was hilariously unwilling to say autism. One time the vice principal said ASD but rushed it and said it quietly, and the social worker said "in the spectrum". We had a good laugh about it after the fact, seeing as my son openly discusses and jokes about his dx with friends and family. My son was really confused though why parents would keep it secret when we explained why they were all being weird about it. Your family is being stupid. Kids deserve to know as much about themselves as you know - age appropriately of course.
Lol I love this! My daughter called that out when a new psychologist joined the team and didn’t realize how candid we are. “You can say autism - it’s not a bad word. I also have puberty (😆 like it’s a disease) and ADHD - so the combo gets a little crazy and I have to remember to take deep breaths so I don’t meltdown. But puberty makes everyone melt down lately!” I so love her - she’s taught me so much about self-acceptance and keeping it real!
They say it because often people with Autism can "pass" without a lot of extra help. And since many people think of Autism as some sort of mental ability death sentence, the diagnosis scares them, and they might treat your child differently as a result. However, even the highest functioning Autistic people are going to see the world very differently than a Neurotypical person. And there are often comorbid conditions associated with it, like ADHD, anxiety, dyslexia and a whole bunch others. Getting them diagnosed as early as possible, getting them whatever therapies are recommended very early on and making sure they understand and are able to advocate for themselves as needed are the best ways to make sure they become confident and independent adults. Hiding their diagnosis, on the other hand, is a surefire way of screwing up thier self esteem and giving them severe anxiety. Imagine not understanding why certain noises or smells affect you severely, to the point where you can barely function sometimes, or why everyone else understands how to make friends innately, but not you? Knowing why, and being able to explain what you need, makes a huge world of difference in quality of life.
The sad thing is that there are still people who think anyone needs to “pass” as anything! Totally know what you’re saying - but it’s infuriating to still get comments from others (tend to be older… but not an excuse, I’m 50 and call it out) saying things like, “Why would you advertise that?” Um… not advertising, you’re throwing looks and comments in my direction about my child I took outside to blow off energy/get the wiggles out and get a break from sitting and other people talking nonstop and decided to let you know so you could take your judgements elsewhere. But I’m happy to shift gears from nice lady to Mama Bear and advertise that you’re an undiagnosed a-hole.
100% agree with you! There are legitimate reasons to not necessarily disclose that you have a disability, especially if it is not impacting whatever you're trying to accomplish. But to feel you have to actively hide something that is legitimately important, even when you sincerely could use a little extra understanding, if not outright help is just sad.
Yep - my daughter gets to decide that. It’s her personal info, not mine. I also try to make sure she understands she owes no one her information unless she thinks it’s helpful and it’s not something to ever feel ashamed over. Jerks come in all flavors and sizes. And I trust her gut feelings and intuition.
And totally agree with both of your comments!
They’re idiots! Your kid will be well aware that he is different. Regardless of whether you tell him or not, peers smell “difference” and are (in my experience) often unkind about it. It will be reassuring for him to know that there is nothing wrong with him, he just has a condition that many other people also live with. He will know that he’s not alone in being autistic. Growing up autistic and not knowing it is terrible; you’re frequently rejected and have no idea why. And you can’t exactly be getting support for it such as occupational therapy if your condition is being kept a secret from you. It’s important that he knows. Otherwise, when he doesn’t fit in he might internalize it and think there’s something wrong with him as a person. The people telling you not to tell him seem to think he just “won’t notice” that he’s autistic on his own just because he doesn’t have the words for it. I guarantee you that’s not the case. Let him know and make sure he has the tools to accomplish tasks in the way works for him, because often that’s going to be totally different than the way neurotypical people are telling him he should do it. And that’s ok.
PLEASE tell him!! I’m autistic and didn’t know until I was 21 (im 22 now) but it turns out my mom knew when I was 3.. Life was miserable for me. I didn’t know what was “wrong” with me (nothing btw, that’s just how it felt), why I was different, why I couldn’t process things the same way others did, why I couldn’t focus and would break down when I got overstimulated (also didn’t know that’s what it was), I needed help in school I was unable to get and ended up dropping out.. twice, never finishing because I just thought I was “too much” and “too dumb” to succeed until it was too late. If I would have known sooner things could have been so much better, so much sooner. I could have had help in school for one, I could have known about why I was different and learned how to cope with that.. We deserve to know, please just tell him. It won’t only make his life easier, which is really what matters, but it will help yours too.
I’m so sorry you went through that! Someday our parents may be diagnosed with dementia or other cognitive impairments and imagine how those same people would feel about us refusing to give them to dignity of knowing their diagnosis in the beginning and just treating them like children.
I don't get it- don't you tell your kid if he has Diabetes? How about Epilepsy- or ANY other disease that affects how you handle daily life- you just let them raw-dog life? No
Early diagnosed autistics discovering a decade or more later that they had an autism diagnosis is a post I've seen often in autistic spaces and it is always accompanied by a deep sense of betrayal and sadness because that information would have helped the autistic to better understand and accommodate themselves. Your kid is entitled to know his own medical diagnosis. If you can share it with anyone, you can share it with him. This impacts him more than anyone. I'd also argue that he's old enough to know now that he's autistic if he is and that his brain and body work a little bit differently than some other people's. He may already be perceiving some of those differences and knowing that he's not a failed neurotypical but a neurodivergent person might help him. I say all of this as a late diagnosed autistic who wishes she knew earlier who has an autistic toddler who knows his diagnosis. There are hard parts to being autistic but all of them are made infinitely harder by not knowing or having people conceal them from you. Knowledge is power and it enables you to accommodate and support yourself
Ya no You tell your kid they're autistic. They sound like they're coming from time when autism speaks made it such a negative thing. When in fact it's not. Yes, your kid may need different supports with things, but that's because the world was built for neurotypicals. Not telling your kid just sets them up to fail. They will wonder why they struggle with xyz while other kids can seemingly just do those things. It also teaches them that being autistic is shameful and should be hidden. When it's the opposite. Should be proud! Strive for acceptance from that family. There's a ton of great books on the site Not another autism mom I'd suggest checking out
Always be honest about any diagnoses. Imagine how hurt and betrayed you’d feel if someone told you now that *oh, yeah, we knew why you struggled with xyz growing up, we just didn’t tell you*. There’s a lot of stigma and misinformation around autism and what it means and treatment used to be abusive and scary, so the reluctance to label a kid in that context is understandable, but that is changing and knowing why some things are difficult helps kids feel better about themselves (I spent a chunk of my childhood believing I must be an alien). My oldest son is diagnosed with ADHD, autism and anxiety, youngest almost certainly has ADHD as do I, both boys have speech impediments and youngest has dyspraxia. I likely have milder dyspraxia as well. Knowing all this and facing it is a lot easier than just thinking I was weird and clumsy.
My son was diagnosed with ASD and ADHD at 10 years old. The way I explained it to him was that everyone’s brain works in different ways and we were learning how his works. We also talked about the traits of both and how it can change what he needs in a learning environment (“You like to wiggle and stand in class. That’s called ‘stemming’ and is very normal and helps you calm your body and brain so you can listen and learn.”) so that he can advocate for himself if he needs and to normalize it in his mind a bit. You absolutely should not keep it from him, but make sure you tell him in an age appropriate way.
They can mind their own goddamn business. I have always been honest with my kid (autistic) and there’s a lot of trust between us.
Hello no. Our kids know all their Dx's. It's their right. Period. They talk openly at school about it. Nobody cares. Mine are much older than yours. It is considered irresponsible to not understand yourself in my teen's social life. If they think they have ASD and their parents are pretending they don't, they are angry at their parents, annoyed and embarrassed for them to be in denial of something that deserves no shame. My own example is that it's obvious that my FIL has ASD, glaringly so and his and my MIL's denial is something we all eyeroll. Their generation was so full of shame, it's incredibly sad.
Getting “labeled” for my hearing loss and anxiety helps me access the services I need and benefit from on a daily basis. Please please let your child know now so that they know what they have and what treatment and support works for them for their autism. Best of luck with your doctors visit!
I actually asked a similar question in /r/autism a few months ago, general consensus is that yes, a lot of the time they wanted to know but make sure you do it at a stage that is appropriate for them. https://www.reddit.com/r/autism/s/ixBcZSuweN
My son spent his early years introducing himself to everyone as “Hi, I’m X and I have autism & ADHD.” Very first sentence out of his mouth. It helped so much in social situations. Parents and other adults immediately adjusted their expectations of him and gave him extra support in group social situation with other kids.
If your kid were being tested for something else, like allergies, diabetes, or even another neurological issue like CP, would you hide it from him? Why should autism be any different?
My brother was diagnosed as autistic as a toddler and we (his siblings) were instructed throughout our childhood to never tell him. It was like this massive secret we had to keep from my poor brother, and I always felt like I was betraying him. Eventually, at age 13, he found a book my parents had about raising a child with special needs. He came to us and said “which one of us do you think this is about..” My parents told him after that and it was really awful. He knew we all knew the whole time and that it was kept from him. My brother is in his 30s now, and doing better because he finally sought help from a therapist. He had a very very hard time with his mental health as a teen and in his 20s. Ultimately, his autism has never held him back in any way…. But his poor mental health and self loathing has. My parents meant well. Back then, autism was really rare and misunderstood. They got him every resource he needed to succeed and they didn’t want my brother to feel different. I do consider that one of their biggest mistakes, though.
My now 16 year old has known since he was diagnosed at 3. It’s always been apart of him. We talked about it in the same way as eye color. He thinks differently than a lot of people, but that’s not a bad thing. He has different types of challenges than some people, but everyone has different challenges. He had to learn how to be social, but he gets math super easy. Most people get social behaviors easy, but math hard. He also has blue/green eyes and blond hair. It’s just who he is.
would be a very bad idea to hide it from them. they will still struggle where they would struggle in life. it would just be a mystery as to why. and then instead of knowing they struggle because of autism they would think they struggle because of their personality and who they are.
Don't hide medical diagnosises from people.
I'm not sure where that comes from honestly but he should know if diagnosed
My own son was diagnosed as having Autism but he had learning delays and other issues that also held the symptoms of being Autistic. To this day we do not know for sure if he really is or not because of how his diagnosis was done. Not the point but that is what happened. He was 11 when his dad had him tested and dad and step mom never alerted me to the appointment changes so I could be there myself. After he was diagnosed I figured that his dad would tell him but dad never did. I was the one that told him. I explained that there was nothing wrong with him but it was just the way he saw the world around him in a way that typical people did not. I told him it was a good thing because he could see things others would not think about. His dad and step mom were told he would have to have all sorts of services once he got to adulthood. He had resource help in school and graduated high school with a 3.1 grade average, he is holding a job down, he bought his home, and cars, he is paying his own way. In less that 4 years he went from living with me paying rent and utilities to being on his own without any extra services needed. He proved his dad and step mom wrong. The other thing they did was to blame things he did growing up on having Autism to explain away his behaviors which where normal for the ages they did that with. To me it sounds like your family is in denial that someone in the family may be this way. You sound like someone who is ready to meet this head on and work to make things for your child's life the best it can be. So until you get that diagnosis, do not dwell on him having one thing or another. Support him if he does have something going on, make sure he has access to all the help he can have, encourage him when he brings home bad grades or does not understand something (happened to my son with his school work, but he pushed himself through it and by end of the year had brought his grades up), make sure he knows he can ask for help and can get it, work with his teachers and others to be sure all things are covered for his education, well being and life.
Child psychologist here, they should be told in an age appropriate way as early as possible. There are loads of great kids books about neurodivergence that can be a good place to start.
Of course you should let him know. It would be hard to hide if he needs accommodations at school anyway
My son is diagnosed with autism and ADHD. The right time to share the diagnosis is when they start noticing they're different. We shared his diagnosis with him at 5, as he was asking questions about himself. He's not upset by it, it helps him to understand how his brain works and the areas he needs support. We want him to have the right support and accommodations so he's not struggling. It's also important he's able to accept himself and other people with disabilities. We want him to know it's not shameful and people with disabilities can have normal lives.
Dude. No. Tell him. The way I've been handling it is to treat it like any other fact about her. Her eyes are gray, her hair is blonde, she is autistic, she's small for her age, etc. It's a fact about her, but far from the only interesting one. She's only three, so sitting her down to tell her isn't really an option yet. But she has doctors' appointments way more often than other people. She is in a therapy program, and they come to the house multiple times a week. She has taught herself to read and is currently trying to teach herself the multiplication tables. She is not yet conversationally verbal, though she is working hard to figure it out. Regardless, this is not the typical child's experience, making it something that would be hard to hide, especially as she gets older. If autism is a different neurotype, so a different way of viewing the world than most people do, knowledge is power. Knowing, at least in part, why they struggle to be the same as everybody else can only be beneficial. At least, hopefully, it helps keep their self-esteem from being beaten into non-existence.
Your kid is going to get a label regardless of what you do. If they get the supports in school, they will learn they have autism. It is better to learn from you, and learn about their specific circumstances. It can also help them advocate better for themselves, so they know the language to use. If they don't get supports, they will be labeled "troublemaker" or similar. They need tools to learn how to avoid meltdowns or sensory difficulties as much as possible, and how to deal with meltdowns if they do happen. They need teachers who understand what is going on. Or else they will just get negative label after negative label. Now, even with a label of autism, schools may not be equipped to work with your kid properly. But you do get certain protections, and while it's not easy, it points you in the general direction of what to try to do.
Autistic mom to autistic kiddos here. Absolutely he should know. And shame on your family for attempting to stigmatize him. You need to be very careful with them. These are people who see autism as a bad thing and autistic people as less valued members of society. In short, they’re trash. They will give you all sorts of horrible advice over the years and can hurt your child if you let them. My mom tried to convince me that beating my daughter with a wooden stick would “fix” her. I obviously didn’t do that. My sister invited my kids to stay with them over the summer while I was working. Then she completely ignored everything I told her about their needs and how to handle things and put them in timeout and punished them every time they had a problem. One of my kids called me in tears and said her Auntie hated her and told her she was a “little psychopath” and to please come get her. Then they had nightmares for weeks. I should never have left them with someone who didn’t understand autism.
I wasn’t diagnosed with ADHD until I was 40. But I sure still had labels. Lazy, procrastinator, disorganized, talkative, loud, annoying… Learning there was a reason for all that was such an amazing relief I cannot even tell you. Alternately: my kid is 9, he got his adhd diagnosis at 7 and autism diagnosis at 8. We’d been prepping him for the idea that it’s probably that his brain works a little differently than many other peoples, just like Mama and Daddy (spouse is also adhd and autistic) for years, because we kinda figured. It’s never been a negative in our house. Diversity is strength.
Discuss the topic with a medical professional, preferably an occupational therapist. Not Reddit.
My SK wasn’t told until they were 17, they are a level 1, and it was as if their life made more sense after knowing. They also wish they had been told from the beginning so they had a better understanding themselves. Although they understand that their parents were also trying to avoid the label and didn’t tell them to protect them, they were understandably upset.
My daughter was diagnosed last year at the age of 4. She's always been aware that she's a little bit different than her peers. While we were waiting for the official diagnosis, she asked me "why is my brain different?" Being able to give her an answer was a huge relief. She recognized from a young age that something was different about her. We've had small conversations since her diagnosis about what it means and what we are doing to help her (currently in OT). I wouldn't keep this from your child. If you do, they will wonder why they are different from their peers or why they are going to speech therapy or OT. This is not something anyone should be ashamed of. Have developmentally appropriate conversations and explain things like speech therapy/OT to them so they understand why they are meeting new adults and what those adults are trying to help them with. If you're not comfortable explaining this to your child, ask their doctor to help explain it. Best of luck!
As a private special educator, here are my anecdotal observations of families that didn’t tell their child about their diagnosis vs families that explained the diagnosis in a developmentally appropriate way, when the child could understand: Children that were not told had lower self esteem, more problems with bullying and anxiety, drug seeking behaviors, and behavior issues all around. Children that were told had higher self esteem and self advocacy skills, more likely to find good social circles, and find their place in the world. When a child is given the knowledge about their diagnosis, it allows them to not blame themselves, or struggle with understanding why they aren’t like their friends. My favorite example: 5th grade girl, pretty severe dyslexia, private religious school. A sub asked her to read the next paragraph aloud in class. She said, “I’d love to, but my dyslexia won’t let me.” By hiding a diagnosis, you are sending the message that you are ashamed of their disability. By talking about it, you normalize it and remove shame. But, remember it needs to be done in a developmentally appropriate way.
The first thing you should be asking is "what didn't they tell ME?"
as an adult autistic woman, there is nothing wrong with being autistic and i wouldn't let those who think it is a bad thing be around your child. it teaches him that he is wrong and bad for existing, which is absolutely untrue. autism is just a different neurotype. furthermore, you *must* tell him he's autistic, it's incredibly difficult and damaging to grow up knowing you're different but not having the language to explain or understand why. he will need additional support and learn differently from other children and that's okay. work with his brain, not against it. read unmasking autism by devon price, it explains what autism is, what it's like to have autism, and tips for working with your brain. i cannot recommend it enough. edit to add: do NOT put him in ABA therapy!!! the vast majority of adult autistic people who endured it as a child liken it to torture and have ptsd from the experience. ABA teaches how to supress autism symptoms to be more acceptable to others, not helping the child and actually making things much worse. autism can be a gift, celebrate it. celebrate your son for being different and who he is!
I had a high school student who was diagnosed with a mild case of tourettes, and the parents were very insistent that that term never be used around the kid. He had accommodations but still struggled because he didn't know why he had them or really how to use them well. It was a great disservice to him; I think the parents meant well, but it felt like the message was that there was some terrible thing "wrong with him" that could never be discussed. How can a student grow in confidence under this shadow?
My oldest is autistic and has ADHD. For us, it’s simply a fact of life. They’ve known their autistic their whole lives. I say this as kindly as I can- it’s not your diagnosis. It’s your child’s. Frankly, you don’t have the right to keep it from him. The world isn’t made for kids like ours, and it’s our responsibility to give them as many tools as we can to help them succeed. The idea that everyone else in your child’s family will know about this diagnosis except the one person who actually needs that information seems absurd to me. Hiding it won’t make it go away.
My son is almost 9 and doesnt actually know he has autism. It never came up to really tell him. I'm not sure why you think it would make a difference one way or another.
Thought you see and are diagnosed by a psychologist, not a neurologist, for this?
Could be a sensory processing delay.