Looking for input from ASD moms please

JenniC1135

There is an 8 yr old boy who lives down the street from us who has ASD. I'd describe him as relatively high functioning socially, but academically he struggles. For example, he greets us and speaks readily to adults and children, and tells elaborate stories about how he's planning a trip to Ireland or France, but his grammar structure is immature and learning to read and do math are difficult for him.  We see him daily at the bus stop.  His mom is very nice but very different from what my prior experience with ASD moms has been (when I was a teacher.)  My experience has always been moms who want their children included as much as possible in the classroom with NT kids.  This mom has an expendive hired advocate, calls IEP meetings regularly and is never satisfied with what his teachers are doing, she wants him pulled into a self-contained classroom pretty much all day, and has him ride a separate special ed bus to school each day.  Obviously, I don't know him all that well and maybe some of this is what he needs, but it doesn't match what I see of him at the bus stop each day.  Anyway, this is all background to my question.

The boy is outgoing socially, but immature, and he really likes playing with my 3 year old - chasing eachother, making funny voices,  and talking to one another.  I think it really bugs the mom, though, that they've clicked like this.  She said something one day about how she knows my DS will outgrow him soon mentally, and she tries not to encourage him to make friends with younger kids even though that's what he prefers.  In my head, I thought, "Well how's he ever going to make friends with kids his own age if he's never included and can't ride the bus with NT peers?"  And now she tends to step in whenever they are playing, giving her DS reminders about personal space when he's not at all too close to my son, and just sort of discouraging him from building any kind of relationship with my son.  I obviously have my own opinions, but he's not my son, so I have to respect whatever decisions she makes. 

I'm just trying to understand why she feels the way she does and what, if anything, I can say or do that's the "right" thing given the situation.  I can't not bring DS to the bus stop, but he likes to stay and wait for the other kid's bus to come as well, which I think is nice , since otherwise he's there for 10 minutes on his own with just his mom waiting for his bus to come.  She kind of makes me feel like she'd rather I just go home and not let them play for that 10 minutes, though she hasn't coem right out and said it.  She just kind of hovers and gives him constant behavior reminders that, as I said, seem unwarranted.

JenniC1135

Fair warning - I think I am about to seriously abuse the quote function!  I do appreciate your feedback - you certainly mentioned some things I hadn't thought of, such as the noise level on the regular bus being an issue.  That makes total sense.

 

-auntie-:

JenniC1135:

I moderate a couple of international suspport and information forums for families dealing with Aspergers, PDD-Nos and HFA; I also participate in a few support groups for for those who live with autism all along the spectrum. In this capacity I have talked with probably a thousand parents over 12 years about educational choices. Closer to home, my own son has Aspergers and is a fully mainstreamed honor student which has not always been the case.

I think it's important to remember that old saw- if you've seen one person with autism, you've seen one person with autism. This holds trus for parents as well.

There is an 8 yr old boy who lives down the street from us who has ASD. I'd describe him as relatively high functioning socially, but academically he struggles.

The term high functioning, as it is used by professionals, means only that the person with autism does not also have an intellectual disability, i.e. he has an average or above IQ. It isn't used to describe social behavior, language skills or adaptive abilities. A person can be high functioning and nonverbal or high functioning and not toilet trained.

Thanks for the clarification.  I meant it to indicate that he is not non-verbal and does appear to respond to at least some social cues.   

His academic performance could be the result of a low IQ. At one time it was thought that the majority of people with autism had IQs lower than 70. Or it could be that he has processing issues or learning differences that make academics a challenge. My own DS is a remediated dyslexic, at 8 he was a non-reader who tested at pre-primer level. We sent him to a private theraputic lab reading school for an Orton Gillingham program and he was reading at college level by middle school. It's hard to know what this child's specific difficulties around academics are. Some kids with ASDs struggle because they have ADHD as well, others live in a dream world thinking about their special interests and others don't apply themselves to tasks that don't interest them. 

For example, he greets us and speaks readily to adults and children, and tells elaborate stories about how he's planning a trip to Ireland or France, but his grammar structure is immature and learning to read and do math are difficult for him. 

It sounds as though his SLP has been teaching him social etiquette through the use of scripts. While they do eventually want to work of social thinking, scripts are a good starting point in the primary grades.

His choice of topic seems odd, it includes a level of fantasy that borders on delusional. Perhaps lessening his grandiosity is a goal in his tx plan. His verbal language glitches would R/O AS, so he probably has PDD-Nos or classic autism. He sounds like what some professionals would call a "fantasy boy".

For him, the stories aren't entirely fantastic.  His dad is a secret service officer originally from Ireland, and the family does travel somewhat extensively.  Yesterday, he was telling us all that he wanted to take his friends to France to see the Eiffel Tower. He said we'd take a limo to the airport, eat in a restaurant, and buy souvenirs.  IME, it sounded like conversations I had with my 2nd graders on a regular basis.

We see him daily at the bus stop.  His mom is very nice but very different from what my prior experience with ASD moms has been (when I was a teacher.)  My experience has always been moms who want their children included as much as possible in the classroom with NT kids. 

In your teaching career, how many children with an ASD dx came through your classroom? Did you teach primary grades or at some other level? Academic setting can look very different depending on the child's age and presentation.

I co-taught many kids with an ASD dx at the 1st & 2nd grade level.  At least 2 had Aspbergers, and one year there were 8 kids who were non-verbal in my grade.  They had a self-contained classroom but were still included often.  My school district model was one of inclusion and the kids were in the classroom as often as possible, with either a SpEd teacher or a parapro as 1:1.  My experience has always been parents who want a 1:1 with their child in the classroom rather than pull-out services.  I think my education background creeps in whether I want it to or not, comparing this situation to what I've known then, and yes, you're right, I've definitely made judgments when I shouldn't.

This mom has an expendive hired advocate, calls IEP meetings regularly and is never satisfied with what his teachers are doing, she wants him pulled into a self-contained classroom pretty much all day, and has him ride a separate special ed bus to school each day.  Obviously, I don't know him all that well and maybe some of this is what he needs, but it doesn't match what I see of him at the bus stop each day.  Anyway, this is all background to my question.

She sounds as if she has her head in the game. Right now I'm watching a kid in my son's band whose mother opted out of advocating because she doesn't believe in labels. Train wreck does not begin to describe the result. Getting all the help she can, early on, offers this child the best chance to be his best self- whatever that is.

I agree wholeheartedly that he is lucky to have her so involved.  

If I had to venture a guess around the bus, he's been bullied on the neighborhood bus. I could tell you tales- the kids whose laptops or musical instruments were broken for shitz'n'giggles, the kids who are tripped or punched, the ones who are egged on to provide entertainment by doing inappropriate things and the ones who are shunned and told to sit somewhere else by every kid on the bus. Maybe it's a safety issue because he isn't sitting in his seat during the ride and the CSE team put him on the van rather than hiring a bus aide to ride with him. Of course, he could be on the van because he has sensory issues, and can't manage the noise level on the bus. And it's possible he displays aggressive or inappropriate behaviors, other parents may have forced the school to remove him from the neighborhood bus.

Sensory issues make total sense here.  The kids on our bus stop and on our bus are so kind to him - bullying would shock me.

The boy is outgoing socially, but immature, and he really likes playing with my 3 year old - chasing eachother, making funny voices,  and talking to one another.  I think it really bugs the mom, though, that they've clicked like this.  She said something one day about how she knows my DS will outgrow him soon mentally, and she tries not to encourage him to make friends with younger kids even though that's what he prefers. 

I totally get this, and agree with her thoughts 100%. It is not appropriate for an eight to be playing chase and other silly games at the bus stop with some random neighbor when there are older kids available. This is a stigmatizing behavior which is off-putting to his peers. At best this behavior will turn them off to including him, it might even cause them to tease and bully him for this behavior later in the day. He needs typically developing peers as behavior models, not threes. It's not in his best interests to play with you preschooler even if it makes the wait easier on the two of them.

I might agree, but all of the kids on our bus stop do this game - 3 K, 1 1st grader, this boy who is in 2nd, at least one 4th & 5th grade girl, and several pre-k boys.  (There's a mom who does daycare so we have quite a crew at our stop.)  They don't chase every day, but it is common for them all to run around in the mornings and roll down a huge hill (!) in the afternoons.  This boy and my son would just be continuing the game after the regular ed bus picked up.  Also, my 3 yo is on the precocious side and tends to behave more like a 5 yo - probably from being around my twins and their friends so often.  I often wish he'd socialize more and act more like younger kids.

Stopping this behavior and waiting for the bus like other eights might be something they're working on. Perhaps this is an IEP goal or maybe he sees a therapist privately. A common therapy goal is to get autistic kids out of their comfort zones so that they can grow socially and emotionally. Allowing him to play with someone so much younger could be counter to that behavior goal. It sounds like she's asking you, as politely as possible, to discourage this play. Please take the hint.

It's not as if you are offering this boy real friendship, only a 10 minute diversion that stigmatizes him with his peers and might torque him up in terms of arousal/self regulation which could impact the start of his day.

Understood.  I would be happy to offer him real friendship - I really like him, and so do my kids, but you have a point about her maybe trying to settle him down in preparation for school to begin. 

In my head, I thought, "Well how's he ever going to make friends with kids his own age if he's never included and can't ride the bus with NT peers?"  And now she tends to step in whenever they are playing, giving her DS reminders about personal space when he's not at all too close to my son, and just sort of discouraging him from building any kind of relationship with my son.  I obviously have my own opinions, but he's not my son, so I have to respect whatever decisions she makes. 

Again, the bus situation is probably the result of issues in the past. I don't understand why the van doesn't just collect him at his home. I suspect this is about a goal of appropriate bus stop behavior with a plan to bridge to the neighborhood bus at a later date.

It sounds like mom is a fierce advocate, she probably has a social skills group set up privately to work on socialization goals. Mere exposure to NT kids isn't going to eradicate his challenges or result in real friendship. I wish it could. My own son is a terrific kid- bright, capable and to the adult eye doesn't do anything too over the top; he is included in group activities but doesn't really have what I would call a real friend. And this is not for lack of trying on either of our parts.

It could be that the mom is feeling very judged and exposed with his behavior in public. We ASD moms have a 6th sense about this. She's being judged, I mean, you took the time to write a rather long 3 paragraph essay about the choices she is making. You always seem like a nice enough bumpie on the parenting board (and your LOs are adorable), but my gut reaction in reading your post was WTF? I can only imagine how I'd feel if I thought one of my neighbors was writing something about how I parent. My son flies below the radar these days, but it wasn't always the case. I have had to explain DS's dx to random people who think they know better than I do and feel free to comment. It's hard.

To be honest, I, too, sometimes look at choices other parents make and do exactly the same thing. Right now I'm watching the implosion of a young man whose mom "doesn't believe in labels" and homeschooled "to avoid constantly hearing everything that was wrong" with her son. The kid is 19 and can barely dress himself. I'm uniform chair of the band parents, so I oversee the dressing out of 164 kids every weekend in the fall. Last week he ended up at a competition without his instruemnt; he was charged with brining the triangle. I am not making this up, there's a clip of this guy playing "air triangle" on youtube and yes, peers and parents are sending it around.

Judging is definitely a fault of mine.  But, the teacher in me creeps in and cringes when I hear the mom reading his daily journal at the bus stop and talking out loud - "Why would you read that book to him?"  "Ugh, I can't believe you told him that."  etc.  Like, she's reading it to herself but commenting out loud and giving me and the other parents these incredulous eye rolls that sort of invite us into the situation, if that makes sense.  Like, if she wants me or any of us to butt out, then please don't complain to us about his teachers or talk about the advocate.  Not that anyone has butted in directly with advice anyway, but I hope you get what I mean.  

I'm just trying to understand why she feels the way she does and what, if anything, I can say or do that's the "right" thing given the situation.  I can't not bring DS to the bus stop, but he likes to stay and wait for the other kid's bus to come as well, which I think is nice , since otherwise he's there for 10 minutes on his own with just his mom waiting for his bus to come.  She kind of makes me feel like she'd rather I just go home and not let them play for that 10 minutes, though she hasn't coem right out and said it.  She just kind of hovers and gives him constant behavior reminders that, as I said, seem unwarranted.

Can you bring something else for your LO to do? Maybe ride his trike or scooter? I appreciate that your kid has a right to play at the bus stop, and that letting them play together seems like a minor thing. But clearly this mom doesn't think so and she knows her kid better than you do. Maybe play with little kids has gone badly at times. He may be talk about topics which are inappropriate or play to roughly or even aggressively. Perhaps this playtime is undermining work on a goal? DS's psychologist costs me $175 OOP per visit; I get pretty pissed if someone takes it upon themselves to undermine the goals DS is working on with him. Of course, I have grown a big enough pair to say something. Sometimes I'm even chill enough to be gracious about it, but it's taken 12 years to get to this point

I hope this helps you understand where this mom may be coming from..

As I said, you have several good points.  I still don't get why she reminds him to keep good personal space when he already is doing that, or to be gentle when he is already being gentle, but I don't understand the choices a lot of parents make no matter if their child has a disability or not.  Thanks again for taking the time.