So Your Kid's on the Autism Spectrum

[lizzywednesday]

After a million follow-ups and other rigmarole (plus some scary mental health challenges related to a peer conflict that became a bullying situation) last school year, we added another layer to the "this is how you must support my kid" saga by learning that DD is definitely on the autism spectrum (not that I'm surprised but it's really nice to have a thing to explain why "the usual" advice doesn't click for us) in the "needs coaching to extinguish harmful behaviors like head-smacking & social skills assistance but does not show additional developmental delays" (I think DSM-V calls it "Level 1")

I have a short list of recommendations/next steps and my brother & SIL will serve as my educational advocates to get the District to fix her IEP and support access (IOW, they're helping me write a re-evaluation request letter; it's been 3 years since her last eval) so she's in a better place to head to high school next school year.

What else should I be doing?

[georgiegirl]

Many hugs. It’s a lot.

DS2 is on the autism spectrum. He’s 10 and very gifted as well (school just had him skip a grade plus he’s 2 years accelerated in math on top of that.). Social issues, school issues (behavioral), but he can also be amazing and curious and sweet and social. The key is identifying people at school who care about your child and will advocate for him. We had a rough year two years ago in part because of a BCBA who had all of these harsh rules and made things horrible at school. I’m still a little traumatized from getting several phone calls a week from the principal. Last year, DS got a new sped teacher (I feel like he scared the other one away) and a new gifted teacher. The combination has been fantastic. I really worry about next year when he has to go to middle school.


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[ArizonaGirl]

My DS is 14 and has ADHD, Autism, ODD, and a written learnings disability as well as several other medical diagnoses.

Elements school was awful to put it mildly. First there was no support because he was "managing'" just fine. Then he was placed in a self contained classroom because he wasn't managing at all anymore. In middle school he had a wonderful self contained teacher and matured and seem to really turn a corner. I mean he still struggles with a lot, but he has grown so much.

[hbridge]

I pm'ed you... However, the one thing I would do is ask your DD what she might need/want. Even little things like being able to go to her locker whenever she needs to, access to a "safe space", bathroom passes without having to ask...

There are a lot of things that can pop up this year and with the transition to high school. Making sure she has a point person at the school to talk to; someone who she feels safe with...

Pm me if you need anything or just want to "talk"...

[niccig]

I pm'ed you... However, the one thing I would do is ask your DD what she might need/want. Even little things like being able to go to her locker whenever she needs to, access to a "safe space", bathroom passes without having to ask...

There are a lot of things that can pop up this year and with the transition to high school. Making sure she has a point person at the school to talk to; someone who she feels safe with...

Pm me if you need anything or just want to "talk"...

Yes ask her what she may want. She may have suggestions that no one else would consider. And she knows herself best. She should be part of this discussion. You will need to advocate for her with the school (she’s too young and it’s a power imbalance with student to teacher), but she should absolutely have input too. I always talked with DS about his 504, but I was the one dealing with the school.

I’d also suggest you read up on neurodiversity. There’s starting to be a shift towards acceptance of neurodiversity rather than try to make the neurodiverse person mask to appear neurotypical. Masking has harmful outcomes (depression, anxiety etc)

The example I usually give on this is about eye contact goals. They used to be very popular, you must teach the person to give eye contact. It makes the listener more comfortable if you’re looking at them and they know you’re listening. Now, we know from adults who have Autism, that eye contact can be painful to them, it can be over stimulating, and they can listen just fine without eye contact. So why would we insist on the person being in pain so it makes the listener comfortable? Why is the listener’s comfort more important? I still see some eye contact goals and I refuse to work on them. There’s many more therapy practices that we now know are harmful, but they’re still perpetuated. Change takes a long time




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[lizzywednesday]

... We had a rough year two years ago in part because of a BCBA who had all of these harsh rules and made things horrible at school. I’m still a little traumatized from getting several phone calls a week from the principal...

Yeah, the "next steps" recommends ABA but a lot of the actually autistic community on social media is not a fan because of how rigid and/or punitive a lot of BCBAs can be.

I don't want my kid in therapy that will be abusive; I just want her to stop hitting herself in the head when she's melting down, which is what I meant by "extinguish behaviors" - if she could not smack herself in the forehead or bang her head on the desk, that'd be great. I don't give a rat's patootie about eye-contact or flipping her hair; I do care if she's hurting herself.

[lizzywednesday]

Yes ask her what she may want. She may have suggestions that no one else would consider. And she knows herself best. She should be part of this discussion. You will need to advocate for her with the school (she’s too young and it’s a power imbalance with student to teacher), but she should absolutely have input too. I always talked with DS about his 504, but I was the one dealing with the school.

At her next IEP meeting, she'll be eligible to attend. SPAN NJ has a class we can take about IEPs, but she won't do anything online other than talk therapy. I'll sit down with her before I check in with my brother; he reviewed her IEPs and said her goals were "too specific" which I found confusing. My SIL says the school district isn't following the law, so I may be pulling her in as an Educational Advocate.

I’d also suggest you read up on neurodiversity. There’s starting to be a shift towards acceptance of neurodiversity rather than try to make the neurodiverse person mask to appear neurotypical. Masking has harmful outcomes (depression, anxiety etc)

Yeah, I just want the self-harm stuff (smacking/banging her head when she's melting down) to stop so she doesn't hurt herself.

As much as the hair-flipping annoys me, it's not hurting anybody. The head-smacking, OTOH, is really scary and usually means I'll get a phone call from her case manager and/or the nurse.

The example I usually give on this is about eye contact goals. They used to be very popular, you must teach the person to give eye contact. It makes the listener more comfortable if you’re looking at them and they know you’re listening. Now, we know from adults who have Autism, that eye contact can be painful to them, it can be over stimulating, and they can listen just fine without eye contact. So why would we insist on the person being in pain so it makes the listener comfortable? Why is the listener’s comfort more important? I still see some eye contact goals and I refuse to work on them. There’s many more therapy practices that we now know are harmful, but they’re still perpetuated. Change takes a long time

See above with my concerns about ABA - I'm concerned about things that "work" without saying what "work" means. I know she's not going to be a NT; what do I need to do to make sure her ND is protected and something to work WITH rather than something to work AGAINST?

[mom2binsd]

Please be very careful with ABA, it is not well researched and the people providing the services are often not well trained or educated, but hired and given a rigid script to basically follow.

Agree with niccig, it's important that your DD is a part of her iep, also hope your Dh is coming around to helping you work together.

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[DualvansMommy]

SPAN NJ is a great community and resource. Lean on them heavily! They’re generally are against ABA too.

How specific are her IEP goals? I can see what your brother means because sometimes the too specific goals hurt the person who needs help most than being helpful. Your DD is also at the age where she is going through huge changes emotionally and physically, so it is a lot for the typical tween, never mind a ND tween.

I’m glad you’re getting additional help and resources and finally a proper DX because I know you’ve struggled in that aspect in last few years.


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[hbridge]

Yeah, the "next steps" recommends ABA but a lot of the actually autistic community on social media is not a fan because of how rigid and/or punitive a lot of BCBAs can be.

I don't want my kid in therapy that will be abusive; I just want her to stop hitting herself in the head when she's melting down, which is what I meant by "extinguish behaviors" - if she could not smack herself in the forehead or bang her head on the desk, that'd be great. I don't give a rat's patootie about eye-contact or flipping her hair; I do care if she's hurting herself.

STAY FAR AWAY FROM ABA!!!! It does not get to the root of the issues and simply want kids to perform in a prescribed mannar!!!!! ABA is abusive! Period. My child is a survivor and has a viceral reaction whenever she sees anything having to do with ABA therapy! PM me about self-injurious behaviors, it is terrifying to witness as a parent!