Looking for resources

[Odetta]

My 13 yo was recently diagnosed with high functioning autism. We told him right away what he had, and then he asked what does that mean, and we were stumped. Do any of you know of any resources on his age level that will explain autism, like a book or something? It is definitely HFA and not Aspergers, which isn't on the DSM anymore, anyway, but there is still tons of material out there for that. I know that HFA and Aspergers are similar, but using something titled Aspergers would confuse him, I think.

 

[NIrelandGillian]

Could the professional who diagnosed your son help you with explaining the diagnosis? The other alternative would be to check out what literature the National Autistic Society has on the subject - just Google something that includes the words 'explaining', 13 year old, 'high functioning autism' and 'National Autistic Society'.

Praying for God's help to work your way through this.

Gillian

 

[hedrick]

One thing worth saying is that the diagnosis doesn't make him any different than he was a week ago. It's not an illness that is going to get worse. It's just a name for some characteristics he's always had. All it really does it give people a clue to things that can be done to make life easier for him. But everything good about him is still there and it's not going away.

Others with more specific knowledge can do a better job pointing to information for him. However as a Sunday School teacher for his age level (7th and 8th grade) I've had several students with various types of HFA, mostly Aspergers but also PDD:NOS. (I guess neither of those exists anymore.) They've all been good guys, who seem to be liked by the other kids, though one had a reputation for being a little weird. The only issues I've had is that one of them had trouble recognizing non-literal language. I'm not sure I ever convinced him that Jesus didn't actually intend anyone to remove their right eye.

At some point it might be useful for him to talk to other HFA kids. There's enough around that there's almost certainly others in his year at school, and if you go to a church of any size, in his youth group. Whether you can find one that would be willing to talk, I don't know. I know the kids in our church because parents or other adults typically identify them, although normally I know anyway.

 

[ASDResearch]

Hi Odetta! I was just reading your post about your son being recently diagnosed with high-functioning autism. I am a psychological associate (school psychologist) and I am currently completing my dissertation on the online experiences of youth with high-functioning autism. I think your son would be an interesting participant to have because he just recently found out his diagnosis and may bring a different perspective to the research project. I would also be happy to answer any questions he has about autism and help explain the diagnosis to him. Please view additional details about the research project below to see if you and your son would be interested!

If you, your child, or someone you know is 12-18 years of age, with a formal diagnosis of Asperger's Syndrome or High-Functioning Autism, and enjoys using the internet (at least 3 times per week), please continue reading! I would love to hear from them for my research study!

For my dissertation I am completing a study on the online experiences of adolescents on the autism spectrum. I am interested in learning about the types of activities these adolescents engage in while on the computer and the Internet, their likes/dislikes about going online, and how their online experiences impact their everyday lives with others online and offline.

Participation in this study involves a one-time, 1-hour interview conducted over Skype on this topic. All identifying information will be removed from the data collected for this study. Pseudonyms will be assigned, and participants' real names will not be shared with anyone without permission. A $50 gift card will be provided as a token of appreciation for the participant's time.

If you or someone you know meets the criteria for this study and would like to participate, please express your interest by contacting me at ASDonlineresearch@gmail.com by July 20, 2014.

 

[Odetta]

Thanks for your responses.

I've ordered a couple of books geared for his age level. I, myself, read a book geared for parents, and used that book's description to give him some more detail. Not sure he really got it, though, so I'm hoping the kid friendly books are better.

The psychologist practically threw us out the door after she gave us the diagnosis. She said we could come back if we "had trouble". We still haven't seen a written report - she literally saw the test results for the first time during our test result delivery meeting. I was displeased to say the least. So I'm not sure I want to go back to her.

 

[dayhiker]

hi Odetta,
That sounds very unprofessional. I think I'd be looking for someone else ebfore going back to them.

I got diagnosed about 7 yrs ago at 55. I've always felt that HFA and Aspergers were the same thing. What has helped me is knowing the characteristics that I had that fell in the HFA group and then I could figure out what I wanted to learn about so that I'd understand what the differences were between me and normal people, NT people.

Sometimes I learn how to act more like an NT person, sometimes I have fun with being different.

 

[NIrelandGillian]

I agree, that sounds very unprofessional and unhelpful. Is there any kind of autism society where you live which could give you some help and support? We have the National Autistic Society here in the UK - not sure what the equivalent would be in the United States.

Support groups run by parents and/or family of autistic people can also be very helpful, but you also need some professional support to get you and your son through the school years.

Praying for God's provision for your needs.

Gillian