The Best Book On Raising Autistic Children

Raising an autistic child with special needs? Colleen Moore shares her wisdom from 30+ years of experience raising her autistic son, Ross.





Autism Help

#1. Lacking Acceptance

One of the most common mistakes that parents make when raising an autistic kid is not accepting their child for who they are. Even after a doctor diagnoses their child with autism, parents tend to ask for another opinion. There’s usually a process of denial.

The only way to go forward is to accept that your child is autistic and move on from there. You need to resolve that you’re going to do the best that you can to raise your child.

It’s important to figure out quickly what to do if your child is diagnosed with autism. Start treatment immediately. Early intervention is important.

#2. Coddling Autistic Children

Another common mistake is that some parents baby their kids too much. When caring for your autistic child at home, you want your child to be age appropriate. So if he’s 16, he should be dressing himself and going to the bathroom by himself. Some people want to do too much for their kids and forget that if you train the child not to do anything, then that’s the way that they’re going to be when they’re an adult, and then what are you going to do?

Let’s say you have a little petite mother, and her son grows to be 6′ 4″. What’s she going to do when he starts hitting his head? If there’s no behavior plan in place that’s effective for the mother, what will she do? He could actually end up hurting his mother, and even though it would never be his intention, he wouldn’t understand. He would just be doing what he did when he was a toddler.

That’s why I won’t let Ross behave that way at all. That’s why I tell the caretakers to be firm and discipline him. Don’t let him behave like he’s 5 when he’s 30. Because of our consistent policy of discipline, Ross knows how to behave appropriately. Otherwise he has to go and sit in a chair on his own hands, and then we put through a whole series of commands until he calms down.

Sometimes they do have to restrain him. That can be dangerous, especially if the child is put on the floor; children have died from that. We will give him a basket that he has to hold, or that kind of thing. At his age, Ross knows when he’s going to go off. He usually will lay down himself. We’re trying a weighted blanket, things like that.

Some of the young children who are just first diagnosed have these behaviors, because the sensory integration system is still off, but you can put a weighted blanket over them and they’ll calm down immediately, or you can bear hug them and they’ll calm down. Then with the communications interventions and behavior interventions and all the therapies and ABA, they’ll hopefully never get to the stage Ross is at.

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At the time Ross was diagnosed there was a magazine called “Exceptional Parent” magazine, and that gave me a lot of information just about the disability community in general. That was a big help. Just that I could learn about guardianship and the parent groups. The parent groups were big sources of information, and then I would go to these conferences wherever I could find one, and try to work with a lot of teachers, people that were in the know. There weren’t a lot of books, though, back then.

I read an article one time back when Ross was in therapy, which was so funny because he hadn’t been diagnosed yet, and apparently Sylvester Stallone has an autistic son, from his first marriage, who is the same age or a little older than Ross. I was reading this article that said (and he abandoned his wife as well, actually) that his son had behaviors which were just like behaviors that I saw from Ross. And I thought, oh my gosh, I think Ross is autistic.

I’ve met people while Ross was in the neurologist’s office where I could tell immediately from watching the child that the child was autistic.

They would ask me about Ross, but then I could see that a lot of them hadn’t figured it out or hadn’t accepted yet what they had been hearing about their child.

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The Medicaid Waiver program is federal money, HCS, or home and community services. When the child is 16 you have to have guardianship. Then you have to go and apply for Medicaid services. Medicaid is for indigent care and disabled people. To get in Medicaid you also have to have social security services, so you have to be on SSI. This bureaucratic stuff is a nightmare. Finally I just had to keep working on it and asking people for help; it’s tough.

Now there are more organizations that will help you with that than there were when Ross was that age. I got some information from what they called MHMR, which is not under DAD, the Department of Aging and Disability, in Texas. You just constantly have to look for stuff. Your educational system, your school district, should be helping you with that, because there’s a transition plan on there at UT, but for us it didn’t help at all, though they do help now. It’s much more common to get the right kind of help nowadays, though again it’s trial and error.

HCS is the group home. There are different levels of need for the group home. Ross happens to be a level 9, which is the highest level of need. Only one percent of the entire population of the department is a level 9 in the state of Texas and this level means that he can be a danger to himself or others. Then there are different levels for how much federal money they get.

Ross needs a one-on-one caretaker or he could kill himself or hurt other people, though he hasn’t done that in a very long time.

The level system is not specific to autism. The goal is to get them into adults who are as self-supporting as possible. They still might need to have some sort of support where somebody comes and checks on them once a day, of course they might live with their parents all their life, but they can, for the most part, take care of themselves. Then you have to think about what happens when the parents pass away.

Ross’s ear, nose and throat doctor’s brother is autistic, and he is probably seventy, and his mother is ninety-five, and they’re still living together. Their sister lives next door. You have to get everything in order. I have all this stuff in place– I have a special needs trust for Ross, I have all his documents, and this comes from reading all the time. In Ross’s era the internet wasn’t there, but now there’s this huge source of information. Make sure everything is in order so that your child can have the best life possible after you are no longer there to take care of him or her.

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How To Build An Autism Support Network

Autism Help

Raising an autistic child can be tough, you have to have a support network. One of the toughest things was Ross not having a father. I thought that Wayne would be, or I wouldn’t have married him, but as it turned out he wasn’t. I did, however, have a great support network with my parents. They [...]

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What To Do If Your Child Is Diagnosed With Autism

The very first thing that parents do if their child has just been diagnosed with autism is to get another opinion. You aren’t just going to take one doctor’s view, although I imagine that most parents by the time they get to having their child diagnosed, know there is something off with their child. You [...]

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How Do You Communicate With An Autistic Child?

Our biggest challenge with Ross is communication. He can’t talk, he doesn’t use much sign language, and he won’t make eye contact usually. People usually ask, “Will my autistic child ever talk?” It’s harder after 5 years old, but 64 studies found autistic children who learned how to speak later, usually between 5 and 7. [...]

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Online Resources For Autism Help

There are several online resources I think are important. The first is autism-society.org, that’s important. They have a wealth of information on that website, and lots of links. They even will talk about their conferences and where they are. This summer their national conference is in Florida, in Orlando. That’s www.autism-society.org. The Schaeffer Autism Report is [...]

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What Are Effective Teaching Methods for Kids With Autism?

Applied Behavior Analysis (ABA) I know that ABA is the most effective teaching method. I don’t know if I could put a name to all of the other methods that are out there. How can you determine if ABA will make a big difference to a child? Your child should be engaged when working with [...]

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Will Schools Support My Autistic Child’s Learning Needs?

Schools have been so slow in providing support for autism. Why? Bottom line: money. It’s very expensive to have a child like Ross in a school district, as compared to an average kid. Regular kids can work and be challenged in a variety of different ways, but for Ross what you can do to help [...]

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What Factors Do Doctors Use To Diagnose Autism?

Dealing with Doctors

One is OCD (Obsessive-Compulsive Disorder) behaviors and sensory integration issues. They gave a lot of brain tests, brain chemical response tests, to show that he wasn’t processing at all, that things weren’t getting in, which would be a sensory integration issue. There’s this thing called the DSM-IV (Diagnostic and Statistical Manual of Mental Disorders, Fourth [...]

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