Asperger's diagnosis--questions and help please

[nikkibelle]

This will probably be a jumble of questions because I feel a little overwhelmed.

 

Our 15yo dd was diagnosed with Asperger's, general anxiety, and possible ADHD.  We are looking for some resources we can trust.  Books, online forums, anything that will help us learn to parent her better.  Are there any online forums for teens?   Maybe a place she can read other's stories, get positive ideas, and feel "normal"?  A safe place to vent?

 

I feel SO bad that we are catching this so late in her life.  I wish I could go back and do so many things different with her.  Ugh.

 

 

[athomeontheprairie]

Hugs. I'm in a similar situation (though, mines 8)

 

Ask on the learning challenges board. There are some amazing moms over there (here too!) who might not see your post here but would be willing to share with you.

 

Eta: I wish I could go back and do years over with this child. But someone on the other board told me I didn't know, and now I do, and so now I will do better . You will too. You didn't know, but you do know and you will adjust accordingly . Don't be too hard on yourself, We do the best we can.

Edited December 22, 2015 by athomeontheprairie

[Scarlett]

This will probably be a jumble of questions because I feel a little overwhelmed.

 

Our 15yo dd was diagnosed with Asperger's, general anxiety, and possible ADHD. We are looking for some resources we can trust. Books, online forums, anything that will help us learn to parent her better. Are there any online forums for teens? Maybe a place she can read other's stories, get positive ideas, and feel "normal"? A safe place to vent?

 

I feel SO bad that we are catching this so late in her life. I wish I could go back and do so many things different with her. Ugh.

(((Hugs))). Is she high functioning? What led you to seek a diagnosis?

[Tanaqui]

You might try asking the forums at wrongplanet.net. I'm pretty sure they have a subforum for teens - and the site is by autistics, which can be so helpful. I really needed that when I was 15 years old and reading about autism for the first time :)

[gardenmom5]

early on, I joined a yahoo austim support group for my area. it gave me good leads on resources in our area, as well as talking to parents who were further down the road than me.

 

I now take dudeling to a naturopathic doctor who also does a protocol called "defeat autism now".  dh was extremely skeptical - but one of his clients coordinates services for people/children with autism, and she told him her patients that also do a DAN! protocol, do better than the ones who don't.  I will not go into how my allopath ped who I had taken my kids to for 25 years responded and treated him.  I was speechless, and never went back.

 

we've been fortunate to have one who is very good - and the progress has been phenomenal.  he is like a different kid.  still has some issues we're addressing, but considering where he started, he'd be nowhere near this good if I'd stayed with my former ped.

 

know there are at least three genetic causes, as well as some other biochemistry.  how a person responds to any given protocol - depends upon their own chemistry and why they are symptomatic.

 

another thing to look into - as it's a common overlap - it auditory processing disorder.  there are at least three subgroups.  it is treatable, but some kids many of their symptoms are more based in the APD.

 

 

[Have kids -- will travel]

A note about the DAN protocol. FYI

 

http://www.quackwatch.org/04ConsumerEducation/Nonrecorg/dan/overview.html

[Faithr]

Don't feel bad about catching it later than some.  Adolescence often brings it to the fore, whereas before the child just seems 'quirky' or a little delayed.  We had the same thing with one of ours and didn't catch it until he was 13.

 

For the Aspergers (which isn't officially called that any more, but people don't want to lose the label, so in spite of that, people are still Aspies!)  I just read some popular books on the subject.  I can't even remember them by name.  I just went to Amazon.  But there is a lot of good stuff out there.  However, there is a whole subculture out there based on diet and autism and trying to cure it.  We tried it all and nothing changed.  So while it might work for some, it might not either.  For me the most important thing for the Aspergers/ADHD diagnosis was to understand how the stuff the child does isn't out of will but simply processing issues.  That made me more patient and better able to work with him.  For our son the depression/anxiety were the most pressing issue to deal with.  So my advice, in hindsight, would be to 1)don't panic 2) give yourself time to deal with all this 3) focus on the anxiety first 4) educate yourself about how your child's brain functions so you can be a better help and guide.

 

Hang in there!

Edited December 22, 2015 by Faithr

[ktgrok]

My son was 11, I know those feelings of regret. All the times I thought he was being rude when he was doing the best he could. Sigh. 

 

The best book to help ME was this one. It REALLY helped me The Complete Book of Aspergers.

 

There is a book I've heard good things about called All Cats have Aspergers or something like that, that she might like. 

[SporkUK]

Try not to feel bad about catching it late. Even with all the psuedo-awareness around these days, lots of people fall through the giant cracks because the idea and images of the spectrum in wider society is really narrow compared to the reality. Some people are caught early, many others wont be until adulthood - if at all. Girls are very much more likely to be caught later, exponentially more for non-White kid of any gender. The system is pretty broken because of bias that it looks one particular way and anything out of that is dismissed. 

 

Honestly, as an autistic parent with autistic kids, that your first questions on safe spaces for her is a great start. I would look into the Loud Hands Project, they have a lot of good writing and websites [though the anthology is good, it would probably be a better read for you than her as it discusses the abuse done under 'cures' and such which may worsen her anxiety, but it may help you to understand her better and understand what Autistic adults are talking about]. I would try to find local groups, I found one through meet-up - however they do tend to be far more guys in them which for me wasn't helpful but teen ones here tend to be a bit more balanced. There are ton of books but you have to wade through the cure/prison menality ones to find the one written for and by other people. There are several out there written just for girls. Wishing you both the best in this!

[Carrie12345]

I am so far out of the loop on the latest books/resources.  But Tony Attwood was my favorite author when I began this journey with ds 13 years ago.

[nikkibelle]

(((Hugs))). Is she high functioning? What led you to seek a diagnosis?

She always seemed quirky and had trouble in social situations, but it never seemed like a big deal.  When she was 12-13 she was in Classical Conversations and had a very hard time fitting in.  But again, I just thought "jr. high years are hard and she doesn't know anybody".  She started having angry outbursts during class if she couldn't get answers right (she's always been a perfectionist). 

Last year she went to a very small private school and had more angry outbursts and social problems so we took her to a counselor to help her work through her anger and emotions.  This year she is in the big public school (3000 kids) and depression, anxiety, lack of motivation, cutting, and suicidal thoughts are making her life hell, so we got a script for Prozac.  We hoped with therapy and meds she would be able to begin to move forward.  Fast forward to now, and she is in a hospital (almost 2 weeks now).  She is finally seeing a psychiatrist, and she made the diagnosis.

 

As I look back it seems so obvious, but at the time I never put the pieces together.

[nikkibelle]

Thank you all for the suggestions and good thoughts.  We are hopeful for her and for us. 

Off to read!

[Tanaqui]

There is a book I've heard good things about called All Cats have Aspergers or something like that, that she might like.

I read it. It annoyed me, not as an autistic, but as a cat lover. I did not think it was terribly accurate with regards to feline behavior.

 

[gardenmom5]

A note about the DAN protocol. FYI

 

http://www.quackwatch.org/04ConsumerEducation/Nonrecorg/dan/overview.html

 

there's a reason I left my allopathic ped., despite taking my kids there for 25 years.  for starters - my son was *terrified* of standing on a scale. (they move.)  the dr refused to examine him unless he did.  my allopathic dr just wanted to drug him and make him compliant.  and talking to other area ASD parents - that entire pediatric clinic is the same way.

 

I'll stick with my ND (who also does DAN! - i wouldn't touch a nutritionist with DAN!)

 

there are a number of causes of ASD - if you can figure out what is going on, you have a better chance of making good progress.  dudeling's is genetically based - and I probably would have been diagnosed ASD.  my symptoms are also genetically based.  treating that - has been very helpful.

[PeterPan]

She always seemed quirky and had trouble in social situations, but it never seemed like a big deal.  When she was 12-13 she was in Classical Conversations and had a very hard time fitting in.  But again, I just thought "jr. high years are hard and she doesn't know anybody".  She started having angry outbursts during class if she couldn't get answers right (she's always been a perfectionist). 

Last year she went to a very small private school and had more angry outbursts and social problems so we took her to a counselor to help her work through her anger and emotions.  This year she is in the big public school (3000 kids) and depression, anxiety, lack of motivation, cutting, and suicidal thoughts are making her life hell, so we got a script for Prozac.  We hoped with therapy and meds she would be able to begin to move forward.  Fast forward to now, and she is in a hospital (almost 2 weeks now).  She is finally seeing a psychiatrist, and she made the diagnosis.

 

As I look back it seems so obvious, but at the time I never put the pieces together.

We got our diagnosis this year, and I look back at ds' pictures and wonder WHY we didn't get it.  He even has a speech problem that is STRONGLY correlated with autism, and STILL we didn't get it!  If it's any consolation (I know it's not), my ds also has those outburst and aggressive responses.  You're going to work on getting her connected to a behaviorist and getting counseling, maybe getting some meds.  Definitely come visit us over on LC.  The label for the board might be weird, but it's a good place to come talk.

 

When we got our diagnosis, I didn't really know what to DO with it.  I had spent so long assuming the problem was me that I didn't really know how to transition to "this is clinical, we could get help".  And, as you say, as the expectations increase and their ability to cope gets maxed out, you get severe problems.  Is she going back to school at some point?  Does your state have a disability scholarship program to give you options?  If she's going back to school, she needs an IEP.  Either way, she needs help with social skills, behavioral goals, etc.  A BCBA (behaviorist) is the one who can help you with that.  It's more just a matter of funding and who pays to get you this help.  That was one of the things I had to realize, that a BCBA was what I needed and that they could handle a LOT of what we were seeing under one roof.  

 

The bio stuff, yeah I think it matters.  But I think it matters in a sort of inflammatory, make it worse way.  I know *multiple* people who were never vaccinated who are on the spectrum.  You can eat all organic, little/no sugar or white flour, etc. and be on the spectrum.  And it's not 3 genetic subtypes.  They're finding AT LEAST 12 subtypes using the current symptom-based research, and now that they're doing serious genetic testing they found that even in a room of *100* they had no overlaps in the mutations!!!!!!!!!!!  So we've got seriously complex stuff going on.

 

If you're on FB, you might like to look up Special Books by Special Kids.  He has a very positive attitude toward SN.  Another terrific one on FB is Autism Classroom News.  She has great freebies, encouraging articles, etc.

[Mrs. Tharp]

I second the suggestion for Wrong Planet and want to include a link to this article, because almost everything you'll read about Asperger's is tailored to boys. I think your idea for a safe space is wonderful and essential for her. Online forums, social groups, family, and therapists who really "get it" can all function that way. Good luck to you!

 

https://spectrumnews.org/features/deep-dive/the-lost-girls/