Does anyone feel like the current DSM needs urgent updating?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:My kid is significantly disabled. This is different than a child who can pass as normal. It is very annoying when someone tells me their child is autistic so they need the same services I do.

Many children are challenging, but there has to be a point where you can say this child is special needs and this child is difficult. Difficult kids shouldn't need to get an autism diagnosis to get any help.

I mean are you a medical professional that can decide that those other kids don't need the service that your kid needs? I mean you don't get to decide that, and you don't get to be annoyed at everyone. I really don't understand what your problem is. You keep saying how you were annoyed at other parents, really you should just stay in your own yard and mind your business. Really.

You sound like a peach. Do you really not get the difference?

It's like someone with glasses claiming they need to learn braille.

No, it isn’t.

Okay, you can keep your autism diagnosis, since it feeds you emotionally, and that poster can continue being annoyed at you complaining about your autistic child who goes to a normal school and needs some support, while that posters child needs a full time aide

Look, perhaps you should consider therapy for yourself-you sound angry and hostile in regards to your dc's dx and challenges. Therapy might be really helpful in helping you find peace.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I understand that treatments for each level might be different, but based on my experiences with autistic people it really does seem like a spectrum. I know one kid who will close his eyes and rock back and forth as far as physically possible. He can hardly have a back and forth conversation, and laughs and talks to himself loudly at inappropriate times. He cannot come up with his own answers to assignments that require original sentences. Another autistic kid I know has back and forth conversations in some context, but not others (he can ask for clarification when receiving instructions, but in casual conversation either doesn't respond or responds with something completely off topic). He rocks back and forth in a less exaggerated manner with his eyes glazed over, and blurts out comments. Other kids just talk at me but can have reciprocal conversations with friends, just in a really off manner and don't ask follow-up questions, and they flap their hands at random moments.

Maybe these are just all level 1, but the first kid and the last kids I mentioned seem to have different levels of support needs.

The traits you are describing sound significantly more severe than the many, many parents who post on here about their HFA ASD kids - whose only "symptoms", for example, are sensitivity in large crowds, can make eye contact (but prefer not to), and have difficulty navigating social norms in casual chit chat. You are describing three kids with pretty clear autism symptoms, and in fact they all share symptoms with each other - but have varying levels of severity. You describe them as level 1, but given what my own level 1 kid looks like (and the other HFA ASD kids i see described here), i thought for sure you were describing Level 2 , if not level 3. The HFA ASD kids i see frequently described on this site are much milder than your descriptions, and share NO traits with the buckets you describe above.

That is the issue.

So just my own personal story. I was talking to my kids therapist and she mentioned that he has likely ADHD but that the lines between ADHD and autism can be blurred. I have never once thought my kid was autistic but sometimes he gets overwhelmed and will shut down (not communicate). When he was younger his shutdowns would happen for 30 plus minutes. Now he is older and he recovers in under 2 minutes. I Personally think these are ADHD related (they often happen when he has to make a quick rushed decision).

He doesn't have any repetitive movements, he doesn't have any communication issues when (outside these incidents, which occur maybe 2 times a month, maybe less). But he doesn't have any issue with back and forth conversations He doesn't seem to have issues making friends although he is not an extrovert. No hand flapping. No difficulty switching activities. With new activities he will take a bit to warm up but then usually jumps right in. As for sensory issues he sometimes says certain pairs of socks feel weird, but that is about it. No issues with eye contact and has a very high emotional IQ.

BUT that is apparently enough for a "it is probably ADHD but he could be masking ASD" diagnosis. Obviously hugely different than my nephew that is almost 30 and unable to speak/communicate, continues to elope (now breaking into neighbors homes) and will never live independently. And it is also different from my other nephew who had one time was diagnosed with Aspberger's and has hand flapping and the communication/eye contact issues


Anyway, I don't know how that wide range of differences really impacts the world. I will say there within social media there are a lot of parents whose kids have severe autism that are struggling w/in the community right now because they are being pushed aside by creators with Level 1 Autism. They are even accused of abusing their children because they are speaking for their kids and not letting their child be their own advocate. They are bullied if they ever express desire that their kids didn't struggle with autism. Because to a lot of people Autism is just some quirky way the brain works "autism is my super power" and those with severe symptoms who need significant support are ignored and swept aside.

Do I think this is the DSM's fault? No, probably not. At least not entirely. But i Hitnk there are a lot of people right now who feel ignored.

[Anonymous]

I think one of the best things a parent can do, is not engage with online stuff that is upsetting. It's healthier for both the parent and the kid, if parent is not getting upset about social media content about autism.

I've looked at it a little-enough to know that I'm not wasting my time getting stressed over it. My dc is considered high functioning, but is clearly not as much as some content creators who have high functioning asd. So, there is a range even with that label.

They get to have opinions about how kids with asd are raised-and opinions are like ***holes, we've all got them you know so I don't worry about it, I'm the parent and I'm going to do what I think best for my dc regardless of what a tik tok person thinks.

And yes, autism IS a spectrum-it's not linear. I have a friend whose dc is considered level 2, she's not verbal, ect. and that child reached some milestones that my own dc was/is very delayed on. So, levels sort of explain some things but are not totally defenitive of how asd effect a certain person.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Many diseases, disorders and issues range from mild to severe/profound. I had a basal cancer cell removed. My father died of squamous skin cancer. Both are skin cancers but vastly different outcomes. Breast cancer is similar. My DC has very severe/profound dyslexia but I don’t get bent out of shape when someone whose child has mild dyslexia complains. I empathize with what they are experiencing. It is not a ‘I’ve got it worse contest’.

great you’re a perfect being! got any other helpful advice?

You’re so angry and abrasive. Do better.

You’re so threatened by other’s emotions. Do better!

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I understand that treatments for each level might be different, but based on my experiences with autistic people it really does seem like a spectrum. I know one kid who will close his eyes and rock back and forth as far as physically possible. He can hardly have a back and forth conversation, and laughs and talks to himself loudly at inappropriate times. He cannot come up with his own answers to assignments that require original sentences. Another autistic kid I know has back and forth conversations in some context, but not others (he can ask for clarification when receiving instructions, but in casual conversation either doesn't respond or responds with something completely off topic). He rocks back and forth in a less exaggerated manner with his eyes glazed over, and blurts out comments. Other kids just talk at me but can have reciprocal conversations with friends, just in a really off manner and don't ask follow-up questions, and they flap their hands at random moments.

Maybe these are just all level 1, but the first kid and the last kids I mentioned seem to have different levels of support needs.

Right but the behaviors you describe are not all that different. They all display perseveration and repetitive movements. I don’t think anyone is arguing about level of severity. I think what we’re saying is that ‘autism is a spectrum’ should not justify grouping people with virtually no symptoms in common together

But the difference in level 1, level 2, and level 3 is severity, and the way I am reading the comments in this thread, people seem to be suggesting level 1 should not be called autism. The last kids I mentioned are kids you’d say have “high functioning autism,” and people in the thread are saying that should be a separate category. Everybody diagnosed with autism, even level 1, has to have repetitive behaviors and communication deficits.

That’s not happening. My ds was dx with asd and he has no repetitive movements and no communication deficits. But he’s supposedly on this spectrum where he can have v little in common with most others on it. Feels like a cop out

I mean, A., you’re not clinically qualified to diagnose it as a “copout” and B., Stage I breast cancer and Stage IV pancreatic cancer are both cancer.

DP. Huh? Misdiagnosis happens all the time. PP’s kid absolutely could have been misdiagnosed. And autism is defined by symptoms not pathophysiology like cancer. Sh*tty analogy.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I understand that treatments for each level might be different, but based on my experiences with autistic people it really does seem like a spectrum. I know one kid who will close his eyes and rock back and forth as far as physically possible. He can hardly have a back and forth conversation, and laughs and talks to himself loudly at inappropriate times. He cannot come up with his own answers to assignments that require original sentences. Another autistic kid I know has back and forth conversations in some context, but not others (he can ask for clarification when receiving instructions, but in casual conversation either doesn't respond or responds with something completely off topic). He rocks back and forth in a less exaggerated manner with his eyes glazed over, and blurts out comments. Other kids just talk at me but can have reciprocal conversations with friends, just in a really off manner and don't ask follow-up questions, and they flap their hands at random moments.

Maybe these are just all level 1, but the first kid and the last kids I mentioned seem to have different levels of support needs.

The traits you are describing sound significantly more severe than the many, many parents who post on here about their HFA ASD kids - whose only "symptoms", for example, are sensitivity in large crowds, can make eye contact (but prefer not to), and have difficulty navigating social norms in casual chit chat. You are describing three kids with pretty clear autism symptoms, and in fact they all share symptoms with each other - but have varying levels of severity. You describe them as level 1, but given what my own level 1 kid looks like (and the other HFA ASD kids i see described here), i thought for sure you were describing Level 2 , if not level 3. The HFA ASD kids i see frequently described on this site are much milder than your descriptions, and share NO traits with the buckets you describe above.

That is the issue.

So just my own personal story. I was talking to my kids therapist and she mentioned that he has likely ADHD but that the lines between ADHD and autism can be blurred. I have never once thought my kid was autistic but sometimes he gets overwhelmed and will shut down (not communicate). When he was younger his shutdowns would happen for 30 plus minutes. Now he is older and he recovers in under 2 minutes. I Personally think these are ADHD related (they often happen when he has to make a quick rushed decision).

He doesn't have any repetitive movements, he doesn't have any communication issues when (outside these incidents, which occur maybe 2 times a month, maybe less). But he doesn't have any issue with back and forth conversations He doesn't seem to have issues making friends although he is not an extrovert. No hand flapping. No difficulty switching activities. With new activities he will take a bit to warm up but then usually jumps right in. As for sensory issues he sometimes says certain pairs of socks feel weird, but that is about it. No issues with eye contact and has a very high emotional IQ.

BUT that is apparently enough for a "it is probably ADHD but he could be masking ASD" diagnosis. Obviously hugely different than my nephew that is almost 30 and unable to speak/communicate, continues to elope (now breaking into neighbors homes) and will never live independently. And it is also different from my other nephew who had one time was diagnosed with Aspberger's and has hand flapping and the communication/eye contact issues


Anyway, I don't know how that wide range of differences really impacts the world. I will say there within social media there are a lot of parents whose kids have severe autism that are struggling w/in the community right now because they are being pushed aside by creators with Level 1 Autism. They are even accused of abusing their children because they are speaking for their kids and not letting their child be their own advocate. They are bullied if they ever express desire that their kids didn't struggle with autism. Because to a lot of people Autism is just some quirky way the brain works "autism is my super power" and those with severe symptoms who need significant support are ignored and swept aside.

Do I think this is the DSM's fault? No, probably not. At least not entirely. But i Hitnk there are a lot of people right now who feel ignored.

You’re making a bunch of different points here.
The central point is not about the feelings of anyone - honestly. The central point is that someone speculating that your kid ‘might’ have autism is indicative of the fact that the criteria for dx the dsm gives are too broad and too subjective.
If the dsm gave an option for ‘traits’ of autism to guide practitioners and did not require an all or nothing approach - yes you would still have a spectrum but to qualify for a full dx you’d need significant impairment (that community would feel seen) and the traits people could also be more easily dx and understood like your child

[Anonymous]

A big problem is the use of the word "mild" paired with autism. Autism is a severe social communication condition that impacts everyday functioning

[Anonymous]

Anonymous wrote:A big problem is the use of the word "mild" paired with autism. Autism is a severe social communication condition that impacts everyday functioning

Not per the dsm. The dsm never says severe. That’s why you now have so many dx with asd who seem completely nt

[Anonymous]

Anonymous wrote:

Anonymous wrote:I mean, autistic people experience the world differently than NT people but similarly to eachother. Makes sense as a single disorder to me. Just because autism is more disabling to some people than to others doesn't mean it's a different "kind" of autism. It's not like we say that people with mild ADHD and severe ADHD (or anxiety, or whatever) should have totally different disgnoses-- one's daily life may be a lot more affected than the other, but their brains have a lot in common.

Right but what were saying is that they don’t bc the category has been too broadly defined

What makes you think they don't have a lot in common? Just because one gets overstimulated by lights or noise and has an instant massive meltdown while the other is able to manage it and get themselves out of there calmly doesn't change the fact that they're both overstimulated by stuff NT people aren't, just as one example.

[Anonymous]

I feel like a lot of people are also overlooking intellectual disability here. Like yeah, of course an autistic person with an intellectual disability is going to be very different and have a very different life than one without an intellectual disability. Not that all non-speaking autistic people have intellectual disabilities-- many have normal or high intelligence too-- but it's just weird to ignore intellectual differences and act ljke it's the fault of the autism diagnosis not to capture it.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I mean, autistic people experience the world differently than NT people but similarly to eachother. Makes sense as a single disorder to me. Just because autism is more disabling to some people than to others doesn't mean it's a different "kind" of autism. It's not like we say that people with mild ADHD and severe ADHD (or anxiety, or whatever) should have totally different disgnoses-- one's daily life may be a lot more affected than the other, but their brains have a lot in common.

Right but what were saying is that they don’t bc the category has been too broadly defined

What makes you think they don't have a lot in common? Just because one gets overstimulated by lights or noise and has an instant massive meltdown while the other is able to manage it and get themselves out of there calmly doesn't change the fact that they're both overstimulated by stuff NT people aren't, just as one example.

Because the difference between a kid who gets overstimulated but is completely mainstreamed, no language delay, and a severely autistic person who cannot potty train and is nonverbal, is a difference in kind, not degree.

[Anonymous]

Anonymous wrote:I feel like a lot of people are also overlooking intellectual disability here. Like yeah, of course an autistic person with an intellectual disability is going to be very different and have a very different life than one without an intellectual disability. Not that all non-speaking autistic people have intellectual disabilities-- many have normal or high intelligence too-- but it's just weird to ignore intellectual differences and act ljke it's the fault of the autism diagnosis not to capture it.

Of course it’s the “fault” of the diagnosis. The diagnosis is a human-created category that is supposed to be useful.

[Anonymous]

Anonymous wrote:

Anonymous wrote:A big problem is the use of the word "mild" paired with autism. Autism is a severe social communication condition that impacts everyday functioning

Not per the dsm. The dsm never says severe. That’s why you now have so many dx with asd who seem completely nt

It doesn’t say “severe.” But there are supposed to be “persistent deficits” and “clinically significant impairment” for level 1 autism.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:A big problem is the use of the word "mild" paired with autism. Autism is a severe social communication condition that impacts everyday functioning

Not per the dsm. The dsm never says severe. That’s why you now have so many dx with asd who seem completely nt

It doesn’t say “severe.” But there are supposed to be “persistent deficits” and “clinically significant impairment” for level 1 autism.

DP here and my kid has autism level 2 and sounds a lot like the description of the first kid here that another PP posted: “ I know one kid who will close his eyes and rock back and forth as far as physically possible. He can hardly have a back and forth conversation, and laughs and talks to himself loudly at inappropriate times. He cannot come up with his own answers to assignments that require original sentences. Another autistic kid I know has back and forth conversations in some context, but not others (he can ask for clarification when receiving instructions, but in casual conversation either doesn't respond or responds with something completely off topic). He rocks back and forth in a less exaggerated manner with his eyes glazed over, and blurts out comments.”

To be honest both those kids sound autistic. Not doubting that. And it sounds like they both have problems in communication that is significant.

The issue to me and many other parents is that basically there’s a lot of kids who have some sensory difficulties around things like loud noises or food, and are sort of introverted and rigid in their personalities, and thus may have some problems making friends and stuff. But they are verbally communicative, in the mainstream curriculum at school, can answer questions and give responses, etc. But those kids are getting diagnosed as level 1 autism now - but should they be? I don’t know. Is a “difficult” personality with some anxiety and sensory difficulties enough to be “autism?”

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:A big problem is the use of the word "mild" paired with autism. Autism is a severe social communication condition that impacts everyday functioning

Not per the dsm. The dsm never says severe. That’s why you now have so many dx with asd who seem completely nt

It doesn’t say “severe.” But there are supposed to be “persistent deficits” and “clinically significant impairment” for level 1 autism.

DP here and my kid has autism level 2 and sounds a lot like the description of the first kid here that another PP posted: “ I know one kid who will close his eyes and rock back and forth as far as physically possible. He can hardly have a back and forth conversation, and laughs and talks to himself loudly at inappropriate times. He cannot come up with his own answers to assignments that require original sentences. Another autistic kid I know has back and forth conversations in some context, but not others (he can ask for clarification when receiving instructions, but in casual conversation either doesn't respond or responds with something completely off topic). He rocks back and forth in a less exaggerated manner with his eyes glazed over, and blurts out comments.”

To be honest both those kids sound autistic. Not doubting that. And it sounds like they both have problems in communication that is significant.

The issue to me and many other parents is that basically there’s a lot of kids who have some sensory difficulties around things like loud noises or food, and are sort of introverted and rigid in their personalities, and thus may have some problems making friends and stuff. But they are verbally communicative, in the mainstream curriculum at school, can answer questions and give responses, etc. But those kids are getting diagnosed as level 1 autism now - but should they be? I don’t know. Is a “difficult” personality with some anxiety and sensory difficulties enough to be “autism?”

All excellent questions. You'd probably look at my DS and wonder that. He does have some odd mannerisms/speech patters that make him seem more "autistic" but at this point, the impact on his life seems to be less and less. The only reason we got the diagnosis was behavior problems that were really interfering with camp/school and the only reason we got the IEP was behaviors in school that have little to do with academics.