Help me understand autism

[Anonymous]

Anonymous wrote:I get so frustrated by these types of posts. If you want to know autism, then interact with the children and families you know. Just like anyone, they are different people with different personalities, strengths, interests and yes, challenges.

Autistic people are not a list of symptoms, not a handful of deficits to be parsed with strangers on the internet. Just be careful that you are not treating these people like circus freaks, cause that's the vibe I'm getting from all this speculating about levels of functioning and comparing one against the other.

It appears that OP was interacting with her family with a son on the spectrum, but is coming to find out that the info she got from that family may be misleading. People, especially close family, should feel they can be open and not give out false information, then people wouldn't speculate.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:NP here. I'd like to understand it better too. One of the kids in our group of family friends is on the spectrum. He is in a normal classroom with no aid but has an IEP-so high functioning. For the most part, he does well when playing with other kids in our group, but there are times when he acts out. His parents don't talk about the diagnosis, or really address behavior problems. Which makes it difficult for the other kids in the group to understand why he "gets away" with things. It also makes him hard, and sometimes upsetting to be around. If you are a parent of an autistic child, how would you suggest we approach the subject with our own NT kids? Kids are all elementary school aged.

If the parents don't talk about the diagnosis then how do you know he's on the spectrum? My DC was in a speech therapy group a few years ago with six boys and it was impossible to pick out the kids who were on the spectrum. Even the SLP running the group said so. When the parents compared notes at the end the two kids everyone thought were on the spectrum were not. One had social communication disorder and another only had an expressive speech delay. The most NT appearing child was the only one with an ASD diagnosis! My own child was somewhere in the middle, appearing different enough that people wouldn't be surprised if he had a diagnosis but wouldn't necessarily jump to conclusions. He has ADHD. No ASD according to neuropsych because he has no repetitive interests, behaviors and other characteristics I can't recall although he's plenty quirky.

Also how do you know the parents don't address the behavior problems? Our child with ADHD has plenty of them and he's in three different kinds of therapy for behaviors and we use positive reinforcement to help him along but also make sure there are consequences when he doesn't act appropriately. Every. Single. Time. It's exhausting. But we don't talk about any of this with our child's friend's friends and make sure not to make a spectacle of "punishing" DS in front of his friends. It really bothers me when parents come on this board and assume parents of children with special needs are not doing anything and letting their kids "get away" with everything because of their special needs.

I know because his mom mentioned it once. Our group has been friends since our children were babies and we have gone on vacation with them. I say they don't really address behavior because they don't. Not that I've witnessed anyway. Every other parent in the group addresses undesirable behavior immediately, which is why it is hard for the other kids to understand why this kid appears to get away with things, or is allowed to yell and scream in people's faces with no immediate consequence. Everyone knows immediate consequences are most effective.

Good lord. Even if you were talking about all NT kids, it is not true that "everyone knows immediate consequences are the most effective." For attention-seeking behavior, ignoring it can be the most effective. Then on top of this you KNOW the child has an autism diagnosis, so it is extra likely to be true that what works for your kid may not work for this kid. I hope your judgment towards these people who are supposed to be your long-time friends is not as apparent to them as it is to me.

[Anonymous]

Anonymous wrote:OP,

This was a lovely short piece developed by the BBC several years ago. It gives you a good overview how kids with autism can be very different:

Per this video only 1 in 6 children will have a full-time job when they grow as adults! Sounds scary!

[Anonymous]

^^
I ignore the behavior. I'm interested in knowing how to talk to the other children in the group about this apparent no-consequence bad behavior. Also, if this bad behavior is directed at another kid, I actually DON'T think it should be ignored. I think it's unfair to make one child suffer because another child has a disability. Again, what I am asking here is how to coach the other kids on how to deal with him. His parents aren't really helping in that regard. We like them but it is getting to a point where doing things with them is just not fun because inevitably some kid will get upset over something he does.

[Anonymous]

Anonymous wrote:
I know because his mom mentioned it once. Our group has been friends since our children were babies and we have gone on vacation with them. I say they don't really address behavior because they don't. Not that I've witnessed anyway. Every other parent in the group addresses undesirable behavior immediately, which is why it is hard for the other kids to understand why this kid appears to get away with things, or is allowed to yell and scream in people's faces with no immediate consequence. Everyone knows immediate consequences are most effective.

The mom told you that she "never" addresses behavior problems? I find that extremely unlikely. Please, if you can't be a supportive friend, MYOB. What "everyone knows" works with NT kids might not work with SN kids.
How can a mom never talk about the child's diagnosis and then mention it to you more than once? How often do you expect her to mention it? It's a medical diagnosis, not what defines him. What do you mean "everyone knows" immediate consequences are the most effective? An immediate consequence for a child who can't regulate his or her emotions can make a problem much much worse. An immediate consequence for a child who is acting out because she wants her dad's attention just reinforces that behavior and makes it worse. Where are you getting this stuff and who made you the expert on handling behavioral issues for a child with ASD?

[Anonymous]

Anonymous wrote:^^
I ignore the behavior. I'm interested in knowing how to talk to the other children in the group about this apparent no-consequence bad behavior. Also, if this bad behavior is directed at another kid, I actually DON'T think it should be ignored. I think it's unfair to make one child suffer because another child has a disability. Again, what I am asking here is how to coach the other kids on how to deal with him. His parents aren't really helping in that regard. We like them but it is getting to a point where doing things with them is just not fun because inevitably some kid will get upset over something he does.

You just tell them that everyone's brain works differently and everyone's parent have different rules and different types of consequences for how they deal with behavior. I don't know why this is even a special needs question. This type of situation comes up with my NT kids and they don't question why every kid's parents reacts differently to the same type of behavior. Little Johnny who is on a sports team says bad words all the time. His parents ignore it. If DS says a bad word I immediately pull him from his activity and make him have a time out and when he gets home he loses a privilege. I have a friend who is very extreme and automatically makes her child lose a month of screen time if he utters a bad word. I think all of these approaches are fine and need to be tailored to the child.

One friend pushed my child and screamed at him during a sports practice recently. I saw the whole thing and my child did nothing to provoke this behavior. The other parent was there as well and did nothing and offered no apology. It kind of annoyed me but I don't judge. I'm sure they are dealing with it in their own way. My child knows not to judge and never said a word about the other parent not doing anything. He knows that if it had been the other way around he would have been in huge trouble.

I think the issue is your own attitude about how the parents handle their child is rubbing off on your children. If you don't agree with their parenting you shouldn't be friends. I would rather not have a "friend" who judges me like this.

[Anonymous]

I have a 9 yr old who was diagnosed with Asperger's when he was 4 through ADOS, psyched eval and by a developmental ped. ASD Diagnosis was confirmed at 7 through a neurological evaluation and with ADHD as an added bonus. He is fully mainstreamed with IEP since prek4 and we never suspected he had ASD or any diagnosis until he got evaluated at the suggestion of his prek teacher.

Even now, people who meet him or have known him for yrs don't know he has any diagnosis unless we tell them. He does very well at school without academic goals in his IEP and tests above grade level. He has repetitive behaviors but most people think this is "practice" for his hobby (obsessive interest) at which he is unusually good at.

He gets social communication and pragmatic language and behavioral supports from his IEP at school. Stuff that is easy for most people is really hard for him like replying when someone says "Hi Larlo!" But with yrs of social skills classes and social supports at school, DS has lots of friends at school and in his hobby and is even popular in his own way.

Since he has Asperger's he did not have speech delay other than pragmatics and attends a dual language immersion school since prek4. DS is obviously very bright so a lot of people contribute his quirks/eccentricity to the fact that he is "brilliant" rather than ASD/ADHD.

[Anonymous]

Anonymous wrote:DS is obviously very bright so a lot of people contribute his quirks/eccentricity to the fact that he is "brilliant" rather than ASD/ADHD.

Inspiring! I feel like he can live independently and can do a full-time job when he grows as adult! I am not sure why people say people with autism can't live independently and do a full-time job

[Anonymous]

Anonymous wrote:

Anonymous wrote:DS is obviously very bright so a lot of people contribute his quirks/eccentricity to the fact that he is "brilliant" rather than ASD/ADHD.

Inspiring! I feel like he can live independently and can do a full-time job when he grows as adult! I am not sure why people say people with autism can't live independently and do a full-time job

Being 'brilliant' doesn't always translate into 'able to hold a full-time job'. One of my best friends was the top of our class at TJ, has two Master's degrees, and burnt out of a full-time job after two years. She's now a SAHM and much happier, volunteers lots, raises her kids and gardens and takes care of her family.

The whole 40-hour corporate work week schedule is rarely a good fit for those of us who are neurodiverse. As we move away from the typical work 40 hours at an office with coworkers mold as a culture you'll see more neurodiverse people dropping back into the workforce.

[Anonymous]

Also, most autistic people (myself included) reject functioning labels. Here's a good explanation of why:
: ahttps://feministaspie.wordpress.com/2015/03/13/functioning-labels-101-whats-the-big-deal/amp/

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:DS is obviously very bright so a lot of people contribute his quirks/eccentricity to the fact that he is "brilliant" rather than ASD/ADHD.

Inspiring! I feel like he can live independently and can do a full-time job when he grows as adult! I am not sure why people say people with autism can't live independently and do a full-time job

Being 'brilliant' doesn't always translate into 'able to hold a full-time job'. One of my best friends was the top of our class at TJ, has two Master's degrees, and burnt out of a full-time job after two years. She's now a SAHM and much happier, volunteers lots, raises her kids and gardens and takes care of her family.

The whole 40-hour corporate work week schedule is rarely a good fit for those of us who are neurodiverse. As we move away from the typical work 40 hours at an office with coworkers mold as a culture you'll see more neurodiverse people dropping back into the workforce.

I think he can hold a full-time job! Since your friend is women she can be SAHM , not sure if men prefer to SAHD(Stay At Home Dad)

[Anonymous]

Another thought: if you want to understand a disability, ask people with that disability about it, not parents of people with that disability. If you want to know what being blind is like, ask a blind person, not the parent of a blind person. Autism is no different.

[Anonymous]

Anonymous wrote:

The whole 40-hour corporate work week schedule is rarely a good fit for those of us who are neurodiverse. As we move away from the typical work 40 hours at an office with coworkers mold as a culture you'll see more neurodiverse people dropping back into the workforce.

Per my speech pathologist autistic people can do FT jobs, can get married and have kids!

[Anonymous]

Anonymous wrote:

Anonymous wrote:^^
I ignore the behavior. I'm interested in knowing how to talk to the other children in the group about this apparent no-consequence bad behavior. Also, if this bad behavior is directed at another kid, I actually DON'T think it should be ignored. I think it's unfair to make one child suffer because another child has a disability. Again, what I am asking here is how to coach the other kids on how to deal with him. His parents aren't really helping in that regard. We like them but it is getting to a point where doing things with them is just not fun because inevitably some kid will get upset over something he does.

You just tell them that everyone's brain works differently and everyone's parent have different rules and different types of consequences for how they deal with behavior. I don't know why this is even a special needs question. This type of situation comes up with my NT kids and they don't question why every kid's parents reacts differently to the same type of behavior. Little Johnny who is on a sports team says bad words all the time. His parents ignore it. If DS says a bad word I immediately pull him from his activity and make him have a time out and when he gets home he loses a privilege. I have a friend who is very extreme and automatically makes her child lose a month of screen time if he utters a bad word. I think all of these approaches are fine and need to be tailored to the child.

One friend pushed my child and screamed at him during a sports practice recently. I saw the whole thing and my child did nothing to provoke this behavior. The other parent was there as well and did nothing and offered no apology. It kind of annoyed me but I don't judge. I'm sure they are dealing with it in their own way. My child knows not to judge and never said a word about the other parent not doing anything. He knows that if it had been the other way around he would have been in huge trouble.

I think the issue is your own attitude about how the parents handle their child is rubbing off on your children. If you don't agree with their parenting you shouldn't be friends. I would rather not have a "friend" who judges me like this.

So you are essentially saying that if the kid is difficult to be around, we should stop hanging out with them because it's my problem, not their's. Got it. With that attitude, he won't have any friends. It's not just me/my kids. Other friends in this friend group have voiced the same concerns. I get that everyone parents differently but if you want your kid to have friends, or for other parents to help their kids understand and navigate this friendship, you have to help us out. The things this particular kid does is not typical age appropriate behavior (abviously) which makes the other kids feel uneasy and a little freaked out/shocked, like they don't know what to do or how to react, so they have started ignoring/excluding/avoiding him. It's not so much judgment but frustration. We all want to help these kids remain friends but it's hard to do when he alienates everyone.

[Anonymous]

Anonymous wrote:Another thought: if you want to understand a disability, ask people with that disability about it, not parents of people with that disability. If you want to know what being blind is like, ask a blind person, not the parent of a blind person. Autism is no different.

Unfortunately I don't know any adult with autism!