General questions for those with children on the Autism/Asperger's spectrum

[Jill- OK]

I'd like to hear any and all suggestions, but I'm especially looking forward to hearing from those who have children that are high-functioning, with either diagnosis (verbal, diagnosed as older kids).

 

What things led you to seek a diagnosis, if your child's issues were/are mild?

 

Has anyone seen a measure of improvement in symptomatic behavior/struggles without traditional therapy? If so, what things have you done as a family/primary teaching parent that have helped the most? What books would you suggest that someone read? What online resources do you recommend? Have support groups given you anything you couldn't have gotten elsewhere?

 

If you chose to pursue therapy for your child, what does this look like? Did you follow the suggestions (for finding a provider) from the psychologist who gave you your initial diagnosis, or did you 'shop around'?

 

Thanks for sharing your experience, in advance.

[hsmamainva]

My 14yo has high functioning autism. He isn't technically classified as Asperger's because he did have language regression (was speaking in simple sentences at 15 months, then stopped talking - except for memorized phrases and parroted speech - echolalia - and wasn't able to really talk back and forth with 'genuine words' until he was 4 1/2)

 

Our first red flag was his 4yr check-up with the pediatrician. They had this list of things that a 4yr old should be able to do, like draw a face, or answer questions (I remember he asked my son, "What is a door made of?" And my son just stared at him). The pediatrician said that he wasn't talking because he was homeschooled. :rolleyes: And suggested that I call Child Find to have him evaluated and put him in preschool.

 

We had him evaluated and they said that he did have some language delays but they weren't severe enough to merit their 'free therapy' and we put him in preschool for 3 hours, 3 days a week. He did start talking about halfway through the preschool year, although he still wasn't talking as much, or as well, as an average 4yr old.

 

I homeschooled him for Kindergarten but, at the end of the school year, he seemed to have learned nothing. He didn't know his letters, or his numbers, or how to write even his own name. He was 6 years old by then. So I took him to a child psychologist in the county where we lived at the time and she told us that he had autism. She said that I couldn't possibly homeschool him. He'd never learn to read, write, or do basic math. He had an IQ of 88. (We don't believe his IQ is 88 now. I've learned to really doubt IQ testing that's conducted on children with language delays! They estimate that our 6 year old, who also has autism, has an IQ of 57, but she's working at grade level and doing very well....she just has trouble with language! But, at the time, we were very upset!!)

 

I homeschooled him again for 1st grade and most of 2nd grade. We put him in school in February of his 2nd grade year (I had just had our youngest child, and had a 2 year old at home and I needed a break!) They noticed his delays - both language delays and academic delays - and put him in 1st grade instead of 2nd grade, where he should have been. And they tested him. He bombed everything they gave him. His reading, math and other skills were rated to be at a pre-Kindergarten level.

 

They told us that they wanted to put him into a special education classroom, all day, with a one-on-one aide, and they would give him 30 minutes of speech therapy each week. We said no and decided to bring him home and homeschool him again. (His older sister decided that she'd had enough of public school, too, so she came home as well).

 

I did a great deal of one-on-one work with him and I started him on a 1st grade curriculum, even though he should've been in 3rd grade. He learned to read and he learned to do math and his speech and language improved tremendously. He's now working at a 7th grade level and doing very well.

 

He's never had speech therapy, but he did do a full-round of vision therapy last year, which helped him tremendously, especially with his reading skills.

 

I hope this helps a little!

[Jill- OK]

...thanks for sharing your specifics. It does help, a lot.

[Greta Lea]

He was 3yo then. I knew he was different, but just thought he was "all boy" with a unique personality. By the time he was 4yo, I KNEW it was more than this.

 

At first, I thought he just had a hearing problem (not responding when we call him). We had his hearing checked and the person doing that said it was central auditory processing disorder instead of hearing loss of any kind. We got therapy for CAPD through the school system (speech therapist do the therapy for CAPD) for about a year and a half. I really saw very little change in any of his behavior from the CAPD. At least it was free.

 

About a year later, we met a new family at church. This family's son had just been dxed with Sensory Integration Disorder. She told me that I might need to check into this. I did and he had it (all folks on the spectrum have SID). The person evaluating him for SID was the first person to suspect Asperger syndrome. He was 6yo at the time.

 

We started therapy for the sensory issues and got on the LONG waiting list for a children's hospital to have the evals. done for AS. A year later, we had dropped the SID therapy, because they were working stuff like tying his shoes and writing. I could care LESS if he could tie his shoes at that time. I wanted someone to help him handle the sensory overload he felt and didn't cope with very well when he was in social situations. The SID therapy was VERY expensive and we saw NO results (although I could care less about tying his shoes, that's the kind of stuff they did with him and I saw no results with that or with help with the overwhelmed feelings).

 

About the time we dropped the SID therapy, he finally got to have his evals. for AS. I had read SO much by this time (a year had passed since I had first suspected it) that I KNEW he had AS.

 

I came home with the offical dx of Asperger Syndrome, but didn't start any new therapies. I had already read a lot about AS and knew the basics of why my ds did some of the odd things he did. I just started praying for God to guide me and help me to help my son the best I could.

 

EVERYTHING became social training ground. For YEARS my son was never more than an arms reach from me. If I didn't teach his classes at church, I was the aid. If we went to the park, I followed close behind him. We role played before going places, sometimes had to stop in the middle of social events to talk him through proper behavior and role play some more. If he was not doing well in a social setting, we left immediately. If I knew something would be too much for him socially, we didn't attempt it.

 

I did find small group settings where the environment is controlled was a wonderful place to practice social skills training with him. Our homeschool tutorial (like a co-op) was wonderful for this. All of the other teachers/mothers and the kids knew about my son's AS (he's VERY proud of his AS). They helped him instead of leaving him out or making him feel like an odd ball.

 

When my ds was 11 1/2yo he started to go through puberty. This was THE hardest time so far. We started going to a pschologist. He recommended to our dr. that we try him on Zoloft, which has been a LIFE SAVER for him. He is still quirky and struggles socially, but the Zoloft made his moods more even. His moods were even before puberty, but puberty does a NUMBER on these kids.

 

Around that same age, we did start a new therapy. It's called Neronet (you can google it). It is susposed to help both sides of the brain work together. It really sounded like it might help him (not socially, but with other issues). A year and a half later, we had seen NO (I mean NO) results and owned them a LOAD of money for this very expensive therapy. We also tried Listening Therapy at this same time. Same results...none.

 

 

(Continued in next post...ran out of space and the system wouldn't let me submit)

[Greta Lea]

My ds is now 14 1/2yo. He is unusual in that he is not an introvert like most Aspies. He likes being social, but just has to work at it MUCH more than most folks. We still like to keep him involved in small group situations where the kids all know about his AS. Our small church youth group is wonderful for him.

 

My son does EXTREMELY well socially. It's not immediately recognizable often times any more that he's THAT different. His social problems are not as extreme as they used to be and I think it's because I've lived the past few years as his social shadow. I considered EVERY moment outside my home (and some inside my home) a social training moment and THAT has paid off more than I ever dreamed.

 

My son's psychologist has often told me that he wishes other parents would be stuck like glue to their kids in social situations like I did when my son was younger. He said he has trouble getting most parents of AS kids (and also some more extreme ADD kids) to understand that every moment outside the home is a training moment for these kids. He has also been VERY supportive of our homeschooling. He says that *all* kids who have AS, ADD and other such social affecting issues need to be homeschooled. He has encouraged me to continue having him involved in small group (but controlled environments) activities like our small youth group and the YMCA classes.

 

I must mention that although this sounds like it would be stressful for him to have his entire social life being a training moment, I make sure that *I* am no stressing him. Now, am I stressed????? You betcha!!!! Being "on" constantly is stresfull!!! But I work hard to make sure he's not feeling undo stress or he won't be able to learn the social thing I'm trying to help him learn. (I also make sure that I get my own "down time" REGULARLY. My dh is wonderful about making sure I get time each weeked to recharge *alone*:)

 

My son is doing so well that I've not taught or helped in his Sunday School class for 2 years (begining the 3rd year now). He goes to youth group on Wed. night just fine without me. For the last two years, I haven't had to be his teacher at homeschool tutorial classes. My boys also go to swim-n-gym at the YMCA for two afternoons a week for 2 hours. Last year, I began to feel comfortable leaving him there while I actually left the building to run errands! This is HUGE for him!!!!

 

He is wanting to go on his first youth overnight (just one night) trip next month. This is way different than anything he's EVER done before, so I will be going as one of the chaperons. I won't be able to be with him in the cabin at night, since all the guys are in a cabin together, but I'm OK with that. I think he'll do fine. Actually, I really think he could probably handle this without me going, but since it's new to us all I want to go just to make sure. I think this trip will be a perfect first overnight youth trip. It will have a small amount of social time and a large of amount of teaching and worship time (controlled environment).

 

He's older now and not wanting me to be his "shadow" so much anymore (when he was little he didn't care that I was constantly right there with him ALL the time. In fact, he liked that I was back then). When I do feel like I need to with him, like on this youth group camping trip, I tell him I'm going for other reason's than to be there to watch him. For this trip, I told him I was going because they need some parents to go *and* that I want to get to know some of the kids in the group that haven't grown up in our church and I don't know them well.

 

Oh, and about books and websites that have helped. Honestly, it has been SOOO long since I read anything about AS that I can't even remember the title of books and I don't have websites saved. I found the best thing for us was for me to read a *little* about AS to get a general idea of strenghts and weakness and a handle on what is causing odd behaviors. Then, after that I just focused on learning about what makes my particular son tick, trying to figure out what he's thinking before he acts and anticipating what things and activities would be hard for him and how I could help him through them. It's been more about REALLY tuning into my son rather than a lot of reading.

 

I read one book (can't remember the title...sorry) that was the MOST helpful, because it not only talked about how they are different and why they do some of the things they do, it also talked about how Aspies generally LEARN academically and how to teach them. I remember it saying that *mosts* Aspies do better learning things in the part-to-whole way instead of whole-to-part. My son struggles in math and this helped me see what kind of math programs he needs. I've noticed that although my son is a very talented creative writer, he is *loving* IEW writing. I know it's because it's a very part-to-whole type of program. Very systematic with clear expectations. Aspies usually love this!!!

 

I might still have this book (since I really thought it was the most helpful one). AFter I get off here, I'll go look and see if I have it tucked away somewhere. If I do, I'll give you the title.

 

I think I remember a helpful website called Oasis or something like. It was just general information about AS, but I remember printing off some info from there to give to his Sunday School teachers that first year we knew about his AS.

 

Oh, yes, I think the biggest help has been to rely on the HOly Spirit to guide me. There have been times that I would hear about (either on tv or article a friend would send me) a certain way we should be working with our AS kids and I would think, "man, how did I know to already be doing that" (or not doing something). I know it was the Holy Spirit guiding me.

 

There have been times when I would feel SO defeated, tired, scared and lost as to how to help my son and I would just literally FALL on my face before the Lord. I wouldn't even be praying. I'd feel too desperate for words, but the Lord heard my moanings and groanings. I can tell you that EVERY single time this happened, by the next morning or that afternoon (I can remember doing this in the early morning a few times) I had a new handle on things. God would reveal to me what I needed to do or not do or just give me the strenght to carry on with a new invigorated spirit.

 

Sorry so long. Hope it helps you some.

 

Greta:)[/color]

[Jill- OK]

...for taking the time to type all that out!

 

It's very encouraging and informative to hear personal experience, and I'm so thankful to you for sharing.

 

I may drop you a PM, if you don't mind.

[Greta Lea]

I found the book I mentioned. Actually, I found two books that I had saved that were helpful (I only save books about any topic, homeschooling, dyslexia, AS, etc...if it was VERY helpful and worth a reread). Anyway, the titles and authors are A Parent's Guide to Asperger Syndrome & High Functioning Autism by Sally Ozonoff, Geraldine Dawson and James McPartland(this is the one that address more educational stuff if you need that). The other one is Parenting Your Asperger Child by Alan Sohn and Cathy Grayson.

 

HTH

[Misty]

Wow, Greta.. What an awesome, informative post! I, too, appreciated all the info. My daughter is currently being evaluated for Asperger's, so I read with great interest!

 

Thanks so much!

[Kelli in TN]

I found the book I mentioned. Actually, I found two books that I had saved that were helpful (I only save books about any topic, homeschooling, dyslexia, AS, etc...if it was VERY helpful and worth a reread). Anyway, the titles and authors are A Parent's Guide to Asperger Syndrome & High Functioning Autism by Sally Ozonoff, Geraldine Dawson and James McPartland(this is the one that address more educational stuff if you need that). The other one is Parenting Your Asperger Child by Alan Sohn and Cathy Grayson.

 

HTH

 

I just have to put a plug in here for Greta and her son.

 

My son thinks her son is the greatest! He is simply a nice guy; friendly to everyone, looks out for his friends, just....nice.

 

Greta knows what she is talking about. Her son is evidence of this.

[Guest Zhena]

Greta,

What a great post! I found what you went through very much the same for what I am going through. I pray God will guide me to help my children the best way that I can.

My son is repeating KG this year in a private school, but I plan on homeschooling him next year to get him caught up on 1st and then start 2nd before the spring. He does so much better with 1 on 1. Now it's just picking curriculum... I was thinking of Abeka. I'd love some recommendations!

Oh btw, I'm looking those books up right now!