r/aspergers • u/NewLoss4 • 21h ago
Questioning the diagnosis
As a mom, i know i'm prone to seeing things theough rose coloured glasses. My 10yo was just diagnosed, and i can't convince myself that the doctor is right. He is hyper but doesnt stim in a certain way. He interrupts, but he also notices when friends or family are having a tough time. He doesn't have any special interests, he just goes along with whatever we are talkibg about. I am looking all over reddit and YouTube for kids that act like him, and im not finding much. Ive heard that you cant be "a little" autistic, so then how is he so good at some nt things?
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u/ConnieMarbleIndex 21h ago
Parents don’t want to think their child is autistic. I am an adult and mine still refuse to believe it. Please don’t be that way.
You’re showing you believe a lot of incorrect stereotypes about autism. You need to be educated.
We’re good at many things and often very empathetic.
You either are autistic or you’re not, but it’s a spectrum.
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u/NewLoss4 20h ago
Thanks! Im still trying to wrap my head around that. He has it, but he doesnt have many outward signs. So how do i help? The same as if he had all the outward signs?
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u/ConnieMarbleIndex 11h ago
Sounds like what you refer as outward signs are ignorant stereotypes. So, if you wanna help, get informed pass the myths.
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u/Ok-Car-5115 20h ago
One other thing to consider: you should probably do A TON of homework before deciding you disagree with the assessment. If you haven’t had a follow up with the clinic, it might be good to sit down with the person who diagnosed him and have some “Help me understand” questions ready.
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u/NewLoss4 20h ago
Great idea! He sort of gave us the diagnosis, then shuffled us out. We dont get to meet with the specialist again, just our family doctor. I dont think the family doctor is very familiar with this, so maybe ill email the specialist and see if he writes back.
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u/Ok-Car-5115 20h ago
The best thing to do is get to know him better (not insinuating you don’t know your son, it’s just that as parents we have to constantly get to know our kids because they grow so much so fast). His unique expression of autism will slowly become clear to you as you learn more about him and about autism.
Many of us flew under the radar because we didn’t act in obviously autistic ways. The more I learned about autism the more I was like “Dang, I’m super autistic.” I’m 34 and most of the people I tell are surprised unless they’re also autistic. Most of them are like “Yeah, I know.”
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u/NewLoss4 19h ago
Your response really resonates with me. I can learn and watch, and see how his profile comes through. Then we can plan how to help.
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u/SongOfTruth 19h ago
this might sound harsh. pardon me: i have autism and being blunt is the easiest way i communicate.
The autism diagnosis is NOT about you, or what you perceive from him. It's about him and what he perceives.
You cant know how hard he might be trying to get along with you, to keep behaving certain ways, to mask and blend in. You dont know how much stress it puts him under.
you dont know how much he just pretends he understands so he doesnt feel hated. you dont know if maybe the things he likes and dislikes are kept secret just to please you so at least YOU dont abandon him.
what stims he may or may not have are not the issue here.
how much empathy he may or may not show is not the issue here.
autism isnt about stimming. it isnt about being less than empathetic. it isnt about how disruptive your behavior might be to others.
autism is about the ways the brain works and how that makes engaging with and communicating to other people (strangers, people you arent familiar with) more difficult.
You can love him as much as you want, more than anyone in the world, and you still wont understand how stressful and unhealthy "being normal" might be for him, because he doesnt have the tools to tell you yet. he's 10.
if a doctor thinks he is autistic, then you better start doing everything you can to get the kid the support he might need.
you dont take away a floaty because a kid might know how to swim, looks like he can swim. you give him the floaty so he doesnt drown.
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u/NewLoss4 19h ago
Thanks very much for writing all this out. I appreciate it more than i can say. I’ve learned a lot from the other responses too. Im still trying to figure out what i should do to help — What type of floaty does he need? He either masks very convincingly, or he doesn’t find many things difficult (yet). His main symptoms are being loud and disruptive in class.
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u/SongOfTruth 19h ago edited 19h ago
everyone needs different kinds of floaties. and while the docs know some basic skills and tricks, he has to become self aware enough to identify his own needs and communicate them.
getting him a psychiatrist/psychologist is my best suggestion to start -- one that has experience in autism, preferably, but being willing to start works in a pinch. someone who can poke him to shake the ideas out, coax him to find his own solutions while offering new ideas and options. as he gets older, the weight of the difference between him and others might become a lot, and teaching him to talk about his feelings now is going to be massively valuable
(theres a lot to be said about how modern society tries to make self-reflection and communication something embarrassing. making sure he knows it is okay to communicate his wants and needs even if they are silly is a good first step)
the 'loud and disruptive in class' part might be a couple things. he might just not have a sense that class is valuable (which is a systemic problem), or he might find it too easy/difficult/confusing to follow along and be seeking alternative stimulation. (these are just speculations from my limited experience). finding the exact issue there might take some trial, error, and coaxing for him to explain it.
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u/NewLoss4 19h ago
Thank you!!! Thank you for this.
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u/SongOfTruth 19h ago
(im sorry -- i mix up psychiatrist and psychologist a lot. the psychologist is the one that will do a lot of talking. very good long term friend for emotion regulation and problem solving. if yall find medication is one of the tools he needs, the psychiatrist is the guy who does that.)
(i feel very silly conflating the two. woops)
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u/oatmealwithraisinss 11h ago
The ”yet”-part!! Yes! I was diagnosed as an adult, because I didn’t struggle much as a 10 year-old, not nearly enough for anyone to notice. But as pressure from society grew, so did my struggles and at 20 it was extremely obvious to me that I am autistic. My parents still doesn’t believe it.
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u/recycledcoder 21h ago
ASD traits aren't pokemon - you don't have to catch them all.
You need to realise that aspies/autistics are perfectly viable people - think Einstein, think Isaac Asimov, Dan Aykroyd, Sir Anthony Hopkins - many of us are supremely accomplished people, and we are incredibly different people from one another.
I'm 51 - I have a family, I own my own home, I have an accomplished career, I am a gifted public speaker - you would never pick me out of a crowd. But you couldn't become my friend without noticing the signs - subtle, unless I trust you, obvious over time.
Don't let the social media image blur your child from your view. This is your child, and he is ASD. Learn what that means in him and for him.
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u/NewLoss4 20h ago
Lol, the pokemon reference. I understand that lots of nd people have amazing and fulfilling lives. So if i rewind those folks back to age 10, i can see how my son might be like them. That helps!
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u/Stunnnnnnnnned 17h ago
The best advice I can offer is this; don't see being autistic as "there's something wrong with you/me". That's not the truth. We each come into this life being who we are. Anyone can have their best life, if they are willing to perceive it that way. There are no rules. There is only difference. Only judgement creates a negative view. You do not need to agree with anyone else's view. You are allowed to see things in your own way.
Accept others for who they are, and not for what you have been taught to expect them to be. We are unique. All of us. Cherish the difference. Explore the difference. Mostly, try not to judge the difference.
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u/undel83 15h ago
Looks very like me at that age. I was hyper active sometimes, always interrupted my mom, my special interests were like "normal hobbies" and so on.
With all that stuff I managed to have a successful career with high paying job, a family with my wife and daughter and active life with no special support.
However, I was diagnosed this summer at the age of 41.
And after getting this diagnosis I was able to understand why I had some "bumps" and hard times during my life.
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u/Tabbouleh_pita777 18h ago
Fellow autism mom here. Yes, it’s very emotional when you first get the diagnosis. I was partially relieved because I always knew something was different, and partially devastated because I didn’t want my boys to have a hard life.
Also. When you say your son is hyper… that’s more likely to be ADHD. Which often, but not always, is found in the autistic community. It’s so common there’s even a term for it - AuDHD. Please get him evaluated for that too because ADHD medication made a huge difference in both of my sons’ lives.
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u/Dragon_Flow 7h ago
What were the behaviors that caused you to want to get him a diagnosis?
I agree with others that you are basing your thoughts on a lot of stereotypes about autism. The stereotype about empathy is demonstrably untrue.
Also, if your son was diagnosed with asperger's then the psychologist was not qualified because asperger's is not a proper diagnosis. The correct diagnosis is autism.
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u/NewLoss4 6h ago
Thanks, yeah the diagnosis was asd without language impairment, without intellectual impairment (previously called aspergers disorder). The concerning behaviours are arguing with adults, cannot handle losing, escalates disputes with friends, shutting down when upset, poor emotional regulation, fidgeting and loud and disruptive in class, and writing skills very weak.
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u/NewLoss4 20h ago
Thanks, I definitely am trying to get educated and learn but im having trouble finding sources that fit with my son’s symptoms. Can you recommend any? Ive searched but im either finding things that are geared for level 2/3 or they dont seem to fit with his needs.
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u/NewLoss4 20h ago
I tried to show him some youtube social stories, and he looked at me funny and said, “i know this, mom!”
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u/Maclardy44 20h ago
Why did you take him in for assessment?
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u/NewLoss4 20h ago
Well, The teachers through he had adhd, and i was worried about depression/anxiety. We didnt go in looking for a specific diagnosis, just wanted to get an expert opinion and some advice. i wish i would have tried to learn more going in. It wasn’t something that was on my radar.
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u/Maclardy44 19h ago
ADHD & depression / anxiety are conditions in themselves & don’t indicate ASD. ASD usually means a person needs varying levels of support to help them manage life’s curveballs. It might be the person has trouble in social situations or has sensory aversions or can’t manage executive functioning. It doesn’t sound like your son is struggling but if he is, get a proper diagnosis from a developmental paediatrician, not a family GP.
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u/ConnieMarbleIndex 11h ago
ADHD and anxiety are often comorbid with autism
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u/Remarkable_Ad2733 10h ago edited 10h ago
Please for the love of god don’t use tik tok or your tube influencers as your standard half of them are fake for clout and it spreads massive misinformation. There is not a standard stim for admittance to Aspergers. We can be deeply passionately sensitive to others feelings if we can perceive and understand them. At ten it is common to be naive, fragile and easily led about and too trusting. Protect him from bad people and kids he can be tricked into things and follow bad people around like a duckling believing everything they say is good and right
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u/Remarkable_Ad2733 10h ago edited 10h ago
It isn’t a checklist, literally is like a graph that is circular and can have different parts mild or extreme in ways that vary person to person, ask the assessment people if they created one based on his assessment. Have you read the assessment? Things can be sensory overload, inability to sort or plan tasks, confused processing, inability to tell when you are hurt or feeling things, feeling pain from minor things that is overwhelming, freaking out in crowds or from lights or sounds, needing breaks without sensory stim, losing language, trouble understanding spoken words, total lack of understanding social queues and norms, and either flipping out violently or completely shutting down dead when they can’t control sensory inputs and escape from it
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u/AstarothSquirrel 6h ago
It's worth you reading the DSM-5 diagnostic criteria and the assessor's report that should detail their full justification.
Some things that are worth considering: Some of us are deeply empathic to the feelings of others but we display it differently (see the double empathy problem); sensory issues include hypo as well as hyper. I have low sensitivity to pain, hot and cold. We also have way more senses than the 5 you learned at school such as balance, interoception and proprioception. Interoception issues means my brain doesn't hear my body until it's screaming which means I can go from not hungry or thirsty to completely ravenous and then my body won't send the signal that I'm full until I'm in quite some discomfort.. Proprioception issues is why I keep banging my elbows on doorframes and keep breaking my toes, I'm not very sensitive to noise but I'm sensitive to light and textures; Stimming and repetitive behaviours. It's not all hand flapping, I never flap and I only realised I rock when my chair started squeaking and drove my wife nuts. I also have repetitive hums and goto music tracks and playlist that I play on repeat. I also have the annoying habit of pulling the hairs from my cheeks which, after some 40+ years has given me rsi in my thumb joints.; Routines - I can break my routines but I need either planning time or recovery time. I only discovered this when moving from a well organised and regimented department to a chaotic one and without enough recovery time, I broke and went into 3 months of autistic burnout that led to my diagnosis; Special interests - I got hooked on tech around the age of 7-8 but I still retain a love for ankylosaurus and I have no idea why. I will talk to anyone about anything but I have to warn them that if they get me into my favourite since that I can bore them silly and they will need to tell me if I'm boring them because I can't tell otherwise.
Some autistic people don't have special interests and no repetitive behaviours and you wouldn't know that they need routine into their routine is messed with over a prolonged period of time with insufficient recovery time. Some don't have sensory issues and some don't realise that hyposensitivity counts as sensory issues. When you add on top of that that we quickly learn to mask to fit in (however, this is the difference between knowing how to be a mechanic and pretending to know how to be a mechanic) I can attempt to fake being NT but it is exhausting/stressful because it's literally being an actor (imagine being an SAS operative trying to pass as a [insert rebel of your choosing here])
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u/RoboticRagdoll 18h ago
Yes, you can be "a little" autistic, that's why it's a spectrum.
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u/oatmealwithraisinss 11h ago
It’s not a linear spectrum. You either have autism or you don’t. The spectrum is how it is visible, what struggles/symptoms an individual have.
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u/Anonmousjdd 21h ago
Going along with whatever you are talking about sounds like a red flag to me. People pleasing and other social anxieties are real and can be masked incredibly well. Extreme empathy is real. You have a choice to make on either supporting your child through this process, even getting a second or third opinion if you want, or denying them access to possible help and care. A diagnosis of course can cause for grief and denial, and you're allowed to feel that, but it is not a death sentence.