My son was just diagnosed with Autism Spectrum Disorder

Post Reply New Topic

My son is two years old, and a child psychiatrist just made us "official" today. She did say that since he's so young, she can't tell us where on the spectrum he's going to end up, but the signs are clear and she's confident in the diagnosis. We've been involved with Early Childhood Intervention since he was 20 months old, when his pediatrician noticed some missed milestones and referred us to them. ECI has been very helpful, providing us with an occupational therapist, a speech therapist, and we'll be starting with an ABA therapist in a couple weeks. I can't say enough good things about them, they've provided us with the tools and support we needed and my son has done well with them.

My concern is that he'll be turning three soon, and we'll no longer be able to stay there. Our case manager tells us that the school district will be taking over, but I am strongly resistant to the idea of turning my child over to strangers in a strange environment and expecting them to give him the same level of care and attention he receives at home from his own family. I homeschool my daughter, and I'd really rather take the bulk of the responsibility for my son's education as well. That being said, I know that there are some things I'm going to need a specialist to help with.

One of the ideas ECI floated to us was a Pre-K special education program offered by our school district, where the school would have them in a classroom environment for only a couple hours a day. Does anyone have any experience with that sort of program? Was it beneficial for you or your family member?

Please, no comments about homeschooling and lack of socialization. It's a common misconception that I'd be glad to discuss with you some other time.

It sounds like you have a lot ahead of you now. I hope your son gets all the support he needs (and by extension you as well).

My son is in the Pre-K special-ed program through the school district and it has been helping him a lot.

Thank you. I'm just nervous about him going from the 1:1 in-home tutoring that had been working for him to a classroom setting, especially since he's non-verbal and prone to self-injury when he's overwhelmed.

Last edited by TexasBlue on 21 Jun 2013, 1:13 am, edited 1 time in total.

That's good to hear.

One thing that's absolutely vital then is that the school have a plan for when he becomes overwhelmed. They should be able to tell when he is becoming overwhelmed and have some ways to help him stay calm. Otherwise, they will find themselves trying to deal with meltdowns and self-injury and your son will most likely lose at least a few hours of productive learning time, not to mention that it's a very unpleasant experience for anyone. Self-injury in autistics is usually (not always, though) an indicator that whatever we're trying to deal with is far past what we are capable of dealing with. I learned to speak on time, and I tend toward self-injury myself; it seems to have the effect of kicking me into "emergency mode" and letting me deal with more stuff... at the expense of inevitable burnout. Just holding him down to prevent the self-injury from happening is not useful (except to prevent the usually superficial scratches and bumps) because the underlying problem would still be there, and restraint is a surefire way to send many autistics into blind panic that doesn't end until absolute exhaustion. So if the school freaks out about self-injury, then they'll probably overreact and cause even more stress. The best way to deal with it is to be quite matter-of-fact about it, to be calm and quiet and not add to his overload, to prevent any major injuries and not sweat the small stuff. But some schools do not know that, and you will probably have to educate them.

I wish you luck. The early years are often quite difficult; we are born into a world that is not made for us and in which it is difficult for us to find a place. But things are getting better and having your parents on your side makes things much easier.

My experience is that services get harder and harder to come by. When my daughter was under 3, I actually turned down some of the hours of ABA because I felt it was too much. When she was in the 3-5 program, it was harder to get what she needed and when she was over 5, she lost all support and services all together, so we had to move.

What I was able to finagle was that the ABA therapists who worked with her in EI were allowed to follow her for the same number of hours at a private preschool that I paid for. The way I argued it was that 1) the district did not need to pay for her in their own program, which is pricey per student, 2) I was already paying for her education through my property taxes and not even using the education I had paid for, and 3) I was offering to pay for the private school myself. All I was asking for was the same 15 hours with therapists she already knew. I would not ask for them to pay for out-of-district placement. I just wanted the 15 hours.

They bought it. It was a wonderful transition for her because her therapists not only helped her transition, they helped the teachers learn to work with her (even the kindergarten teacher got help before she was ever even in kindergarten). They were also able to successfully "wean her off" their support while they were still there to monitor the results and intervene when necessary. She started by only attending school for the 15 hours, but then we worked up the number of hours she attended unsupported. By the time she was ready to graduate pre-k, she was successfully in the classroom for full days without support.

You might want to zip down to the parent's section. You might get different perspectives there. Not that the perspectives here are not equally important. Just a different point of view. I find that I like to immerse myself in as many points of view as possible when I am trying to figure out what to do so I make sure I evaluate all courses of action prior to deciding on one.

I would have loved to be home-schooled (ha, my mother even inquired about it, but since I didn't have anything "wrong" with me, I wasn't eligible. This is of course back before common knowledge of HFA and the inception of AS as a diagnostic concept).

Me too!

[Moved from General Autism Discussion to Parents' Discussion]

I homeschool my ASD son. He DID go to a pre school for kids with special needs though, and I swear it was the best decision I made for him. It helped him a ton, he got all his services there and made friends that he has to this day (he is turning 8 in a few months). If I had to do it over again I would make the same decision, to have him in the special ed pre school! He has been homeschooled since K, and is going to be a 3rd grader in Sept. I also feel that homeschooling has been the best decision for him when it was time to enter elementary school.

My son received speech and OT both at the school he would have gone to had he attended public school. he also got social group one year at the school. He still will get OT next year as a 3rd grader, and is finally being discharged from speech.

My son also started out in EI pretty much since birth due to his cleft lip and palate, he had feeding specialists and eventually speech, once he was pre school aged he was accepted into an integrated preschool class where he remained for 2 years, then homeschooled.

good luck!

Last edited by MMJMOM on 22 Jun 2013, 6:41 am, edited 1 time in total.

you must be talking about the kind of home school when the district sends teachers to the house to educate you for a while if you have some sort of issue that keeps you from attending school. For that you need some sort of medical condition or mental health issue (like my iece now has severe anxiety she cant leave the house, she has teachers come to educate her, or my nephew who has Addisons Disease, cant get up sit or stand for too long, he has teachers come too). it is a short term situation though, done until the child can re enter the class setting.

We homeschool our children, we are the teacher and it is another legal way to provide an education for your children. There is no help from the district, no teachers come to the house, it is different completely! You don't need an issue to prevent you from going to school. Many kids who are homeschooled DO have issues, but many are typical kids. WE OVE HOMESCHOOLING

I was homeschooled from grades 7-9 and 11-12. I wish I'd been homeschooled all along.

I distrust our school district, that's why I chose to homeschool in the first place. Their academics are poor, their teachers are shoddy, the classrooms are too crowded, and the students are punks, and everything revolves around the football team. My kids are not going there. I do feel that I may have to compromise as far as the Pre-K Special Ed program is concerned, since it's the only way to continue the therapy that's been helping my son.

As for the moderator who moved this thread to the "Parents" section: I saw it before I posted my question, and I intentionally didn't post there. I didn't especially want the opinion of NT parents of autistic children- I have several of those where I live, and I've heard what they have to say. I wanted to ask other people on the autism spectrum if they thought these programs were beneficial or not.

I would like to thank everyone who has shared their experiences with me so far, as every little bit gives me some insight into what my son may be thinking and feeling. Since he doesn't talk yet, I can't ask him what he wants. All I can do is ask you, and attempt to extrapolate from your answers what his input might be if he could give it.

Just so you know...a lot of the parents who post here are both parents of kids on the spectrum, and on the spectrum themselves.

Even beyond that, you will not find your garden-variety "NT parent of an ASD kid" here. While we do hold a variety of opinions, I would say most of them are not your average, mainstream kind of opinion.

But you are very wise to seek the opinions of people on the spectrum themselves, as well.

We do have some NT-parents-of-autistic-kids, actually. I agree that they're not "garden-variety", but that's mostly because they're usually the better sort of parent. The sort who accepts that the child thinks differently and that that's okay; working toward communication, learning, a good life in general.

The kind of parent who doesn't last long here at WP is mostly the kind who thinks their goal is to "fix" their kid, turn them into some imaginary NT kid that doesn't actually exist. It might be because many of us have been on the receiving end of that, but we're not usually too charitable when somebody sees their child as a burden or a problem, or sees autism as something that has to be gotten rid of so they can have the child they imagined for themselves.

A lot of parents with a new diagnosis come here and they're scared out of their wits, wondering what to do, wondering how to help their kid, how to make sure their kid is happy and gets to have a satisfying life. That's okay; that's normal. They just need information. They're usually going to do just fine. But when somebody comes in and they're thinking of their kid as a problem or a tragedy... We get mad. That's just the way it is. We're people, not problems. Some parents think of their NT kids that way, too (you must become a doctor because we say so!) but autistic kids are even more vulnerable. Some of us were literally abused by parents who could not accept us as we were. I was called an immature, overdramatic brat, and my stepfathers used to kick me around. So maybe I'm not as charitable as I could be when somebody says, "I have to get rid my son's autism; it's ruining my life! I want my normal child!" Usually, those people have already decided that autism and anything said by an autistic person are to be rejected, and I can only hope that their kids learn, later on, that it's okay to be different, because they sure aren't going to learn it from their parents.

So yeah, you'll find NTs floating around, but they're NTs who have decided that they want to make a world where their autistic kids can live as equals. They often find themselves fighting school systems and health care agencies to get their kids useful treatment. They are often confused or overwhelmed by parenting a special needs kid. But at the bottom of it they are parents who love their kids just as they are, and that's really all that any child needs. Everything else naturally follows.