Its real. ASD, school, and what next?

[athomeontheprairie]

I seldom visit this board. But have on occasion, posted on this board. Always about dd10. Maybe I’m looking for advice. Maybe I’m looking for understanding. Maybe I just need to know this will be okay.
 

Dd10 is on the spectrum. When she was younger I sought help. But she is super high functioning that I couldn’t get anyone to believe me. A couple years ago another child was seeing a professional, when she  asked me if dd was diagnosed with Asperger’s. She said what I had thought for years. Now? Well we have diagnosis (ASD level 1). It’s liberating. It’s freeing. It confirms everything I’ve thought. I’m not crazy.

School is so so hard. Hard enough that I’ve seriously thought about ps for her the past couple years.  Well, this fall she is going. It’s decided. I’m relieved, so is she and so are her siblings. What do I need to know about school? Should I take her in May before this year finishes? Do I ask about an IEP (she’s nearly two years behind in Math.) Do I tell dd the diagnosis? I’ve been given such mixed thoughts on that. Do I give the school her diagnosis?

Along with this, how do I get support to help parent her? I feel like in most things we are good. But perhaps there are techniques that work better. Or, idk. If you’ve btdt, can you tell me what I need to know? Or what questions I need to ask? (The questions for the school or the her doctor? We just recently needed to change doctors and she is yet unaware of this diagnosis.  It comes from a mental health professional that I know.)

                                                                                                                            

 

[City Mouse]

You should let the school know of her diagnosis in advance. Give them a copy of the evaluation that you have. They may or may not be will to start an IEP before she enrolled, but It would be in your DDs best interest for them to know her diagnosis. Schools will often treat behavior issues differently for a student who is labeled with AU than how they would treat the same behavior in an child who has not yet been diagnosed with anything.

 

If you are wanting DD to visit the school before he first day, it would probably be better to visit once school is out. You could call and find a day when teacher are available for a short visit. May schools will do a "meet the teacher" event right before school starts. That might be good enough.

 

Yes, I would tell your DD her diagnosis. She probably already knows that she struggles in some areas. My view is that it is much better for kids to understand why they struggle than to self-label themselves as "stupid" or "weird" or what ever else they come up with. If she doesn't know she is behind in math yet, she will find out very quickly when she starts school. I have also found that it helped my DD to understand why her responses to situations were not like everyone.

 

Some school districts do provide parent support for students with autism. There may be other public resources in your area for children with autism such as camps or social groups.

 

You may not feel like she needs much special support at her age, but she won't always be 10 and her differences may become more pronounced. My DD was not formally diagnosed until she was an 22, but I knew. She did fine in school academically, so I didn't push it. I won't give you more details now, but Looking back I do think the services that are available to older students could have helped her in the transition to college and work.

Edited March 10, 2018 by City Mouse

[PeterPan]

Congrats on making the decision to go to school! It's hard. It's something we've talked about, because we just always have to be realistic. Yes, you're going to want to go through the IEP process. You're going into their busy season and it can take 120 days even if they're really clipping along. The law is 30 days from the day you make the request till they meet with you, another 60 days to do the evals, and another 30 to write the 504/IEP. So basically you should make the written request now to have the IEP in place by fall, yes. 

 

Do you know anyone else in your area who has gone through the IEP process for autism? Did your psych run language testing, pragmatics, etc.? The school is probably going to need to do more testing, and there will be the question of whether she fits the legal definition of autism in your state. They can do an IEP, no matter what, but your IEP can have a different disabling condition listed than what your medical diagnosis says. They're going to look at what affects her ability to "access her education" blah blah. So you'll want to look up what the legal definition is in your state on your dept of education website.

 

You can also figure out what evidence you have that it's affecting her ability to access her education and what you think ought to happen. If she has low pragmatics scores, they ought to add social goals. She clearly needs academic goals. Does she need breaks, work on interroception (recognizing and saying how she feels), staying calm (OT stuff like Zones of Reg), etc.? 

 

You want her to visit the school while it's still in session. You should go visit it yourself, ask for a tour, talk with the SN coor. Then, if you know that's the school she'd be placed in, then have her come visit while it's still in session. That way she knows what to expect in the fall and isn't anxious or worried. 

 

Do you have other schools that could be on the table? In our state we have autism schools, so we have quite a bit of choice. I even have a dyslexia school near me that will take some kids with autism. The support needs for some of the kids can be very similar, with breaks, integrating Zones of Reg into the classroom, etc. So definitely check out all your options. 

 

For help in the home, you're wanting a behaviorist.

 

You might like to see if you can get her into some good social skills groups this spring/summer. Around here the groups take off in the summer because so many kids are out of school and available to get intervention. These groups will be small and will do Social Thinking materials and play games, do art, do outings, all kinds of stuff. My ds can be pretty challenging, and he has always gone to them willingly, which is really saying something. We went a little crazy this semester, signing up for three different groups, and honestly it has been GOOD, really good. They're not crazy expensive, as things go, and it was really good for him in ways I hadn't expected. It might make the transition to school smoother to get her into something like that, because it would bridge with exposure to kids, exposure to complying with someone else, practicing complying with someone else. It might improve her confidence when she goes in the fall, rather than having it be all new. Even if you have to drive a long way to get to one, it might really be worth your effort, even just for one round.

 

How does she feel about all this? If the school has a BCBA, you can talk with them about how to support the transition. They can give her a tour. They might direct you to social stories. There are things they can do. Definitely talk with them and definitely do it NOW. Your worst case scenario is that they blow you off and want you to to enroll her and have them watch her a grading period before they begin evals. That would be your WORST CASE scenario. You want to fight against that which is why you want to have evidence NOW that it's affecting her ability to access her education.

 

Legally, right now, as a homeschooler, as a person not enrolled in the ps, you have the federal right, under IDEA (Child Find) to request evals. So if you weren't saying I'm going to enroll her, if you went in just saying I want evals, they should do this. Your state law decides if they have to go ahead and write the IEP/504, but federal law forces them to do the evals. It's when you say oh I'm going to enroll her that they can say well let's just wait, no evidence yet that it's affecting her ability to access her education. 

 

But that's just more a reflection of the school and how easy/hard they are to work with. Schools vary. Some are total pains in the patoot and some are going to try really hard to help her. So you'll just feel it out and go through it. I have to go back to the school AGAIN to update our IEP and fight AGAIN. I have a pain in the butt, incompetent, under-trained district. It's so frustrating. Hopefully your district is much better. What I'm learning now is that it is becoming the standard (not required, but more like ok this is what good districts do) to have an ADOS team. I had no clue. So think about it. Unless they accept your psych's diagnosis (which they might, sure), how are they supposed to eval and say yes we see the autism? They don't see her enough and no one else but you sees the behaviors enough to fill out the forms and make it show. We had Sunday School teachers seeing him 20 minutes a week trying to fill out forms. It was ABSURD. They should have had an ADOS team and they should have done the ADOS. That would have been the correct tool for our situation.

 

But hopefully your school is like butter and well-trained in Social Thinking and just gonna do you a great job! Keep us posted, ask questions. :)

[PeterPan]

Your library may have the NOLO book on the IEP process.

[Storygirl]

I agree with what the other posters have said. Talk to the school now. Contact the special education department (sometimes called pupil services). They may very well say, "Let's just enroll her in school and see how she does in the fall before we move ahead with evaluations here." They can say that all that they want, but the federal law says they must evaluate within the timeframe PeterPan mentioned, as long as you MAKE YOUR REQUEST IN WRITING.

 

They are within their rights to say that there is not yet enough evidence for evaluations, even if you present to them your private evaluation reports (this happened to us). Because part of the law says they must be sure that the child has been taught properly before deciding there are learning issues. As a homeschool parent, this feels accusatory, right? That we may not have been doing a good enough job? Don't take it personally, because it is just part of the law. To help with this, you can write up a report as her current teacher, where you detail the kind of instruction she has had, any accommodations you have provided at home, and what you see as her strengths and weaknesses. You can also gather some sample work.

 

Go ahead and request the evaluations while you do that, though, so as not to lose time.

 

Some schools will allow students to do a shadow day, where they visit a class. You can think about whether that would be helpful or not.

 

We homeschooled from the beginning and then put our kids in school when the younger three were in fourth and fifth grades. The oldest started in ninth grade. Transitioning from homeschooling to the classroom can present challenges, so just expect that and don't be surprised. If you can get an IEP in place before the beginning of school, it will help to have that extra support, instead of starting the year without it.

 

By the way, the school does not have to write an IEP just because there is an autism diagnosis. Some students with ASD can function in school without one. Because your daughter is behind in math, they may find she has an academic need in that area, even if the ASD is mild enough that she doesn't qualify on that basis.

 

Other than math, does she have problems with behavior, emotional regulation, reading comprehension, attention, or participating in or contributing to groups? Those are common problem areas for some students with autism, and the school needs to provide support in those areas if she needs it. Be sure to detail those kind of things when you make your request, because they show how her diagnosis keeps her from being able to access the curriculum in the same way as her peers. "Accessing the curriculum" is phrasing in the federal law, so it's good phrase to put in your request for evaluations.

 

Finally, I just want to give you some support and say that going to school can turn out to be a good choice for your child and your family. There are no guarantees about that, of course, but it has been a good choice for us (and I was really reluctant to do it, for a really long time). My kids have a range of learning issues, and two have IEPs and one has a 504. One of them is on the border of the autism spectrum (though not diagnosed as of yet). It's been good for our family to have a team of people helping us through the schools that they attend.

[Pen]

I've not read other replies, this may be repeating.

 

I suggest you contact the school now. Try to get an IEP plan in place for next year.  Or at least some plan.

 

Visit with her this year so she knows her way around, at least.  And ideally has met the SPED and perhaps some other teachers.  If she is being evaluated for IEP, that will probably be happening anyway.

 

Consider having her start this year.  Maybe when they are doing relatively fun end of the year stuff to get used to the school and other kids without yet having much pressure to do well in classwork.

 

 

[PeterPan]

At this time of year our ps are preparing to do state mandated testing. Might want to be cautious.

 

Also, think through what supports you're advocating for. Our ps is like Pen says. They literally give no one autism as their disabling condition for an IEP for ASD1. If you walk in with ASD1, you get squat, nothing. It's absurd, because clearly those people are clinical and need SOME kind of intervention, at least social skills. Around here they'll put in social skills goals, academic goals, etc., so what you're quibbling over there is the disabling condition listed on the IEP. In our state it's a funding difference, so that's why people fight for it.

 

Hopefully your school is awesome to work with. Does your dd mainstream for social activities? Like if she goes to sunday school or church or co-op or whatever, how does she do? How does she do in settings with 25-30 kids, like what a school classroom would be? That will tell you a lot.

[ktgrok]

Why wouldn't you tell her or the school? You say how much having a diagnosis helps YOU, and it will help them too. Everyone will know the differences, but if you don't give them a name (ASD) they will come up with their own (disruptive, lazy, unmotivated, snob, rude, etc)

 

My DS was 11 when diagnosed. I told him that there are different ways to label different kinds of thinkers. The way that he and some other people (named famous people thought to have Aspergers) think is called Aspergers or Autism. Lots of people think like he does, but most don't, so it can be hard for everyone to understand each other. I gave some examples of his life where his thinking was different than mine to help him get this. 

 

And that was it. He was like, oh, okay and went back to doing what he was doing. 

[exercise_guru]

If there is anyway you can pay to get a report and diagnosis outlining recomendations from who diagnosed your child?

 

First study and write down what accommodations you want and work with a professional to get a report with those recomendations in it.

 

Then go to the school with an open heart and advocate. Start with just getting her on the front row because that always helps any child. Be specific get to know the teacher and be a positive but invested parent. Then ask the teacher to meet with you 4 months into school for feedback and ways to improve your daughter's 504. This has worked for us and truly is the only way my son would get the help he needs.

 

 

Othwr ideas, try to help your child get some outside therapy if your insurance covers it.

 

Also the diagnosis will help all the way through college and that matters more and more as kids grow up. They need different levels of support so getting that now paves the way forward.

 

Also if you can try to get your child in band or something to help them build community. It really helps. I have a close friend who's son has aspergers. Band has helped him like school and feel like he has friends even though it is so hard for him to build relationships. He also did basketball but that was a mixed experience. He is very involves in their church and that has been a positive experience to build social awareness and his self esteem.

 

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[athomeontheprairie]

First, all the advice I’ve been given irl has been NOT to say anything. This goes against what I would normally do. She already knows something is not the same. But wanted to hear from others that have btdt.

 

I do not have an evaluation. All I have is a letter that says she is asd1 and that with proper supports she should do well in school. This is from the therapist that diagnosed her. We have an appointment with our (new) pediatrician in a couple weeks.

 

I do not know what supports will be helpful. I do not know what supports she needs. I do not know what to ask for. If I knew those things,  I would know other things to do to make her successful at home J I just mean I can’t ask for something I don’t know about.  Someone mentioned the front row-that never would have occurred to me as something to ask for. But yes, I see from my own life that it’s true. What else do I need to ask for?

She has social problems, and has a very hard time focusing.

 

Therapy? What does that look like?

I will look at camps-but can you help me with search terms? I’m going to need to go outside my normal everyday area to look for this…

 

You mentioned state testing right now and to be cautious? What does that mean? School here is out in late May. Should I wait until May to go in? Is there a better time? My baby is receiving PT, which here is through the school Special Ed program. I can ask her some of this stuff also.

 

If I need to make the request in writing-to make them do this now. What IS the request? What do I need to ask for?

I feel lost. Thank you so much for your help.

[PeterPan]

Can we back up? Advice irl about saying nothing to your dd about her diagnosis? Or saying nothing to the school? First, about your dd, my two cents is answer the question she has. If she's not having a question about it, she might not be ready for the answer. You can kind of back door by using picture books (All Cats Have Aspergers, etc.), letting it come up.

 

As far as not telling the school, are these parents who've been in your school system? They may know something about your ps and how helpful or antagonistic they tend to be. Here's the thing. With the limited documentation you have, the school could say there's not enough evidence to compel them to eval. They *can* say they. They can say big whoop, enroll her and we'll decide later whether to eval. The law only says they have to consider whether there's evidence of a disability that needs to be identified, something affecting her ability to access her education.

 

The flip side is for you to enroll her, if her disability is legitimately affecting her ability to access her education, and NOT inform them and NOT advocate for an IEP seems sort of perversely unsupportive. It's basically allowing the system to do what it does best, watching them fail and taking forever to implement anything as the kid flounders.

 

So that's your call, but my two cents is to do what you CAN. If you have evidence NOW that her disability is affecting her ability to access her education, then advocate NOW. They may listen and may go ahead and eval. If they deny you, you tried. If you wait, then she is left to whatever happens. 

 

The normal course of the process is that they watch her for a grading period (or semester or year) until someone notices stuff going on that is affecting her ability to access her education and they go wow, she needs to be referred for evals. Then that teacher or school employee makes the request in the system. From then the legal timeline starts. 

 

At ANY POINT you can jumpstart that and write saying you suspect a disability is affecting her ability to access her education. You can do it today, the day you enroll her, a month after you enroll her, whenever. 

 

The thing is that a new situation is a lot of change. There can be opinions, like oh just see what happens, etc. I personally think that more supports, more preparation is more better. Why not TRY to see what they think she needs? All they can do is turn you now. They might not. It will really vary with the school, the school culture, their funding (how generous they are), etc. 

 

Ooo, they already know you? Sure, just really politely say hey, we got this diagnosis, we're thinking about enrolling her... Just feel them out. No, no need to wait till May. Remember, even in an ideal situation, it's 120 days from the day you make the written request. Date, sign, copy, boom. 120 days from that request. That's how long it will take. And they'll try to baloney you and say summer doesn't count, which isn't legally true. So if you want whatever they can do in place by fall, you basically need to start now.

 

You're probably going to learn a ton through the process. They might offer you some services or a summer placement or something. They might have some ways to help her transition. The wheels of the process are going to grind achingly slowly, so you might as well start now. Around here, they wouldn't want to get a request like that in May, because the whole IEP team is gone, poof, two weeks into June. So if you waited till then, they would be terribly inconvenienced.

[PeterPan]

See if your library has the NOLO book on the IEP process. Details everything.

 

The school is going to need to run pragmatics evals as part of this. So like when people are talking Social Thinking, that's going to show on the pragmatics evals. Personally I would get your evals through the school, get the testing done, THEN begin interventions. Like if you're prioritizing, that's where I would start.

 

As far as finding resources in your area, connect with autism support groups, call SLPs, find OTs or SLPs specializing in autism, find a behaviorist, etc. You'll need to network and just see what is available.

 

Fwiw, around here a surprising number of SLPs and OTs work in the ps during the day and in private practice in big clinics during the evenings. So they're doing BOTH. So it can be really good, and it can inspire you like ok there can be some really good SLPs and OTs in the ps! Obviously if you're paying for it privately, you can get as much as you can afford or your insurance will fund or whatever. But the ps sometimes have really well-trained people doing good work. You may luck out and get access to some great stuff. You won't know till you jump in, and that's why I don't understand the logic of not requesting the evals. Are those people coming from a perspective of WANTING services from the ps??? My ds needs services. I would never send him in without trying to line up those supports and services. That would be absurd. Now they could turn you down and say not enough evidence to warrant evals yet, sure. But I would at least try, get on their radar, etc. There's no legal limit on how often you can request evals. You can be a total pain in the butt and request them over and over till they finally do it.

 

What does she need? Dunno. But that math is enough behind that probably you have evidence that she needs SOMETHING. If you go in with the medical diagnosis of autism and low standardized test scores and some more evidence, that ought to get you somewhere.

[PeterPan]

When my ds' diagnosis was new, I had this same thing of the school "autism expert" (who totally was NOT an expert, btw), asking me what I wanted. I was like I don't know, my kid just got diagnosed and I want to get whatever he needs! Well that got me no where. :(  So I get it. The thing is, you know math is behind and you know you're enrolling her. What PROBLEMS is she having? What PROBLEMS do you need to solve? Be very specific. Make a list. You need evidence of something causing a problem with her ability to access her education. That's the stupid phrase they'll repeat 30 times.

 

It's ok for an IEP to be an evolving process. Like they can start somewhere, get the pieces in place they can figure out (need for math intervention, need for pragmatics eval and social goals, need for self-regulation goals) and then develop the rest as they see issues happening. Even for kids fully enrolled sometimes IEPs are an evolving process like that. They try a level of supports, see what happens, talk with the parents, do some more things. It's not always like they just rub a ball and know. At least that's how it is with some irl people I talk with. 

 

You can distinguish what would be nice to happen eventually vs. what really, really needs to happen right away. Then you know what to emphasize. Like when my ds was 6, 7, 8, we had to emphasize with them that he would leave the building. They had to know that, because that was a safety issue that could not be denied. Some supports can evolve and some have to be in place right away, kwim? 

 

Their retort is *probably* going to be that they'd like to see how she does with the increased structure of school. School, because it is highly structured and has peer models and an ebb and flow, does sometimes help with kids who benefit from structure. So the ADHD stuff, some of the behavior stuff, etc. can really improve just with the high structure. Some schools are bringing in positive behavior supports for EVERYONE. They're sometimes even doing Zones of Regulation for EVERYONE, school wide. Seriously! So to say oh well she needs Zones of Reg, well they might be doing it school-wide or might have a classroom they'd put her in where that teacher just does it, boom, for everyone. 

 

There's a lot of that built in support already. So they might want to watch her for a grading period, but it might not mean nothing is happening, kwim? It's something you can talk with them about. You can have your priority list of her biggest challenges in accessing her education (being ready to work, being able to do her school work, being able to learn what she's supposed to learn, being able to hang with the people she needs to hang with to do her learning tasks). 

[Storygirl]

I think the state testing issue is that regular school pretty much stops for a week at a time, while the students sit silently, filling out bubble sheets. It's not a great time for a new student to join a class. But you should be able to ask the school the dates for the testing, and if you want to avoid it but enroll her this spring, just have her start the week after testing is over.

[Storygirl]

I'm sorry that you feel overwhelmed. Maybe it will help you to know that that is 100% normal.

 

When I enrolled my kids in school, they were the same age as your daughter. Two of them were 10, and one was 11. They started in school without their IEPs in place yet, but I placed my request for evaluations right away. They were in school for part (most) of the year before their IEPs were in place, and the adjustment was hard for them. And I found the IEP process stressful, and things did not go exactly as I expected.

 

But hey, we survived that period of time without the IEPs in place!! Now my kids have been getting intervention for three years, and they are still only in middle school. So getting this whole thing going at age 10 or even 11 still gives you plenty of time before graduation for the school to work with her.

 

We have found that the more that the teachers get to know my kids, the better input they have in the IEP process. My son had a teacher for the second year in a row this year, and she saw so much more in him this second year than she did the first. PeterPan is right that the IEP is a living document that can be revised as needed. In fact, it is required by law to be reviewed and revised annually.

 

All that to say, if you don't get that request in before she starts school, it is not the end of the world. Do what you can. Really.

 

But you can, if you wish (and it would give your daughter the most support) go ahead and request them to evaluate her now, while you are still homeschooling.

 

To do that, write a letter saying that she has a diagnosed disability that is affecting her ability to access her education and that you are requesting evaluations from the school under the Child Find law (you can google this; it is a section of the federal law that requires schools to identify children with disabilities). Go ahead and use those exact words!

 

Submit it to the special education department of your local public school, and include a copy of the letter containing the diagnosis. It is best to hand deliver it, or if you cannot, take it to the post office and ask them to send it certified mail, so that you get a receipt when the school receives it. This is because the date that the school receives your letter is the date that the clock starts ticking for them to start the process.

 

How do you know she is two years behind in math? Is she working in a program that is two grades below peers? Or is that from standardized testing? In any case, in addition to the autism diagnosis, state in your letter that you suspect a math disability.

 

You don't have to figure out everything at once. You can just start by submitting that letter. Then you will probably have a 30 day wait time, which you can use to prepare for the meeting with the school, at which you will present all of your concerns (writing them down is best, as I mentioned in a previous post). And you can also read about the IEP process during that time and make sure you know what your rights are.

 

It's a lot to take in. But you can do it in steps. Don't be discouraged!! Ask here for advice on any of it, and we can try to help.

Edited March 13, 2018 by Storygirl

[Storygirl]

I have seen some people on the boards here say that they do not reveal their child's diagnoses to the schools, out of privacy concerns or to keep their kid from being "labeled" or whatever.

 

But I really don't get that at all. My kids need and deserve all the help they can get, and that is only possible if teachers understand their issues. I have had more than one teacher reach out to me in confusion or concern because of things they observed with my kids, and I totally welcome that. I don't want the teachers to be confused or not understand why my child is having trouble. I want the teachers to be fully informed, so that they can offer the most effective help. I consider the teachers to be on the same team with me, so I don't keep anything from them.

[lulubelle]

I totally relate to you, OP!  My DS is very similar.  I finally don't feel so crazy also!  My DS just began public school this year, as a freshman in high school.  I'm not sure it's better.  Nothing ever "fits" him.  My DS is the glass is half empty kind of kid.  If he is asked to do anything that he has to "work" at, he hates it.  My Dh and I preferred to homeschool him all the way through.  He did better with online classes from home.  He learned better when he could go back to a class lecture and hear it again.  Public school is overwhelming, fast paced, and frustrating.  But, it is great to have him out of the house!  My other 2 kids are so much more relaxed.  Now they just have to wait till he comes home for the fireworks to start!  I text him throughout the day to make sure he is organized.  I pack his backpack in the morning, make sure he is working during studies, and have homework listed in the afternoon.  It is still constant. There is no magic bullet!  

 

I had him evaluated mid-year the previous year.  The school had him do speech and a social group the last 8 weeks of 8th grade.  It was actually helpful.  His speech improved and he new at least a handful of kids.

 

The high school provided less services.  My son was a ball of stress and has been so difficult at home.  I asked for more support at school.  He got a little.  We live in a town with a high school known for intense academics.

 

There are pro's and con's to everything.  Nothing is ideal.  I can only hope that he will grow a lot through his high school years and be able to manage college.

 

And, I can only hope that I can survive it all without a nervous breakdown :crying:  

 

Good luck on your journey with your daughter.

[exercise_guru]

OK here is the thing about revealing a diagnosis from my point of view. Only do it if you are asking for something from the school. For example preferred seating, extra tutoring, extra time on tests, teachers checking in to make sure they got the information, an elective used as study hall and support . Things that need to be in a 504 because the threshold is lower than an IEP. So bottom line you need advice from an autism expert. You need to know how to help a kid succeed in school who has your child's diagnosis. Then try to get it in writing but even if you don't write down the two or three things you are asking for. 

 

Let me give you an example where it isn't helpful. My sons school fought tooth and nail to not provide speech therapy then ask me to put his private testing in his permanent record. Forget that I chose to go private with speech therapy. Why are they asking for all this information if they are going to provide nothing for my son? I only disclosed testing and diagnosis If they pertain to a 504 or IEP or an accommodation that I need for my child to be successful in school . In one instance the audiologist as specifically in her report for preferred seating and so they deferred to her on that and put it in my sons 504

 

I guess the case could also be made to let her try it with nothing but then she might flounder and it might be a mess for both of you. 

 

OH and I read lulubelle below yes that is when you involve the school is if you want to ask them to run the testing and you want to have them see if your child qualifies for services. In our instance we had one child tested privately for half of the stuff and had the school test for the rest to save money. In our school they would not let us have a copy of the tests that they ran. After that I went solo and only involved them when I needed accommodations from testing I did privately. 

 

Edited March 17, 2018 by exercise_guru

[lulubelle]

As for specific tests - you request in writing to the school that you want her tested for school services due to her diagnosis.  By law, the school has to respond to you and have a date suggested for testing.  They may ask what tests you want.  You say the full battery.  You need the village to come support you - that would include the school.  The tests should include: speech, PT, OT, social issues, intelligence, and maybe more.  

[Tanaqui]

Do I tell dd the diagnosis? I’ve been given such mixed thoughts on that.

 

As an autistic individual, I believe you should always, always, always tell your children the truth. ALWAYS. In fact, I believe this so strongly that I want you to go re-read that sentence a few dozen times, and each time add another "always".

 

My parents knew when I was little. They weren't able to get a formal diagnosis for me at that time*, and they didn't tell me they were looking into it. They meant well, but this was a mistake and it harmed me. No amount of love and acceptance at home - and boy, I had that in spades! - made up for this error.

 

What I told the girls about this, when talking about my own diagnosis, is that just like everybody looks different on the outside, we all function differently on the inside as well. They have much darker skin than I do, and their hair requires different care because they're biracial. I find some things easier than other people and some things harder, because my brain works in a certain way. That's not good or bad, it just is.

 

I found that revisiting this conversation helped when discussing things like ADHD, dyslexia, bisexuality.... Some of these things affect my girls. Actually, all of them do!

 

I don't recommend the specific book "All Cats Have Aspergers". Not as an autistic woman, but as a cat-lover. Whoever wrote those captions does not understand cats at all.

 

* Common story for autistic women my age, especially those of us who were pegged as "gifted".

[Lecka]

Here is my opinion.

 

For you discussing with her, I think give yourself a few months, maybe as long as 6 months, to let your own thoughts settle down.

 

For school, I think there are a few considerations.

 

One, does she need supports. Is she getting informal supports right now. If she is getting informal supports right now, she needs those to be formal supports at school. Or they can start as informal supports at school and then become formal supports. But if she is getting supports, share that. You can share that with or without sharing the diagnosis. I would share the diagnosis though in this circumstance.

 

Then there is the next thing.

 

I have two kinds of experiences with meeting level 1 autism kids. One is where I can tell very quickly. If this is the case, that random people will quickly think “I suspect she is on the autism spectrum†then if you don’t disclose, you are just going to get into a weird guessing game where they don’t say stuff to you because it’s not their place a lot of the time, but it will be the elephant in the room and it will probably make you come across strangely.

 

Then there are kids where I wouldn’t know without parents telling me. A lot of these kids are going to be fine at school regardless, but then it can be good to share. These are the parents getting frustrated that people at school don’t see a need for support, think their kids are skating by without really understanding, etc.

 

Then — frankly the only reason those parents talk to me and tell me the diagnosis is because they know my son has autism and is getting supports at school, because it is obvious, and then they approach me.

 

There are also some parents I have met at parent meetings where their kids are doing well in school but the parents still like the support group meetings. And I mostly wouldn’t know with these kids if I wasn’t told.

 

Then I think there’s more leeway with school but I tend to meet people who do disclose and discuss with their kids, and are involved with autism activities of some kind, because that is how I meet them.

[Lecka]

It has been a real positive to be open about the diagnosis here. It’s not the same situation because my son is younger and not very aware of it.

 

However, it is very helpful for my two other kids. They have both had phases where they have had a lot of questions and we discuss it a lot at that those times. Other times it doesn’t come up for long periods of time.

 

It is needed for my other kids. My older son had some upsetting (to him) misunderstandings and misconceptions. My daughter has had a lot of discussions about what we hold people accountable for as far as their behavior and what we forgive. They are really different conversations for my two kids, but it has been important for both of them.

 

I think also it’s important for kids to know about all different kinds of people who have autism, and not only know about one person. It took a while to figure out but this was the cause of a lot of confusion for my older son.

 

If you aren’t ready to talk to your kids, if it is painful to you, maybe there are other people who could talk about it or be available to talk about it, or check in once in a while.

 

I really couldn’t handle this stuff for a while.

[Lecka]

I don’t know how much to make of it that the therapist spent just a little time with her and then asked you about it. It could be the therapist is very perceptive and has seen subtle things with siblings to put it in her mind.

 

Or it could be it would be obvious to a lot of people who are at all knowledgeable about autism.

 

If it’s the second I think you really will come across strange if you don’t mention it at school.

 

And on top of that, kids could even ask her about it, and she could be prepared with a response.