Books/Resources for parent suspecting Aspergers in 12 yo child

[Anne]

I have a friend with a 12 yo child whom they suspect has Aspergers.   The child is lined up for testing (in a couple of months, I think) and I think some counseling, but she needs some better tools now.  Anyone have anything to suggest?

TIA!

Anne

[Rosie_0801]

Lower stress levels wherever possible and explain everything. 

When they are toddlers it's all "look at that flower, do you remember what it is called? Oh, there's a snail!" When they are older, you read them books like 'Queen Bees and Wannabes' or 'Masterminds ad Wingmen,' and explain everyone's motivations. With a twelve year old, it's time to put work into boundaries and what makes a suitable or unsuitable dating partner. They might seem too young for the latter, but training takes time.

[Innisfree]

To some degree the choice of books depends on what issues they’re having. The Social Thinking company has good resources, though, both on the website and as books to purchase.

https://www.socialthinking.com/
 

And yes to lowering stress levels. 

[DawnM]

My son was not diagnosed until age 14 even though we knew before then.   I read (with him) a book called Look Me In the Eye.    I also read a book called Finding the Grey, which was really helpful.

Does she want books to explain things more or how to parent or what to do when you have Asperger's?   What is the information she is looking for?

Tony Attwood is a good author for books on Asperger's too.

[Storygirl]

One thing that may be helpful is for her to know that Asperger's is not a diagnosis that is given any more. Instead, the diagnosis is Austism Spectrum Disorder. If she researches Asperger's, she will be getting older information. Some older books will still have good things in them, of course, but the most updated information about diagnostic criteria will not use the term Asperger's.

There is a wide range of types of materials out there. If she wants to understand more about how a diagnosis is made, she can easily research that on the internet by reading about DSM5 autism spectrum disorder criteria. DSM5 is the official description of conditions that practitioners use for diagnoses. She can also ask the evaluators what testing tools they use and research those ahead of time, so she knows both what to expect and whether the person she is working with is using the best diagnostic tools. My son, for example, was given a screener called the GARS by one neuropsychologist, and that ruled out ASD for him based on the way that we as parents answered a questionnaire. It was not the best tool. Years later, we met with a psychologist who specializes in autism, and she ran the ADOS, which is considered the gold standard, and he easily met the criteria that way. So some evaluations are better than others. Our story is not unique. There are others on the boards here who had to go through multiple evaluations to get the correct diagnoses.

It may also be helpful for the mom to know that with complicated kids, evaluations are not always "one and done." Over time, as the child progresses developmentally, more things are likely to show up that need investigation. We, for example, have had many psych, speech, OT, and school IEP evaluations over the years.

[Anne]

Thank you all!  I think at the moment she's just trying to figure out how to parent this kid better.  Does anyone know of any good online communities?  I think her friends have NT kids and so she's getting a lot of useless advice and input and is feeling pretty discouraged.  😞

Anne

[Innisfree]

1 hour ago, Anne said:

Thank you all!  I think at the moment she's just trying to figure out how to parent this kid better.  Does anyone know of any good online communities?  I think her friends have NT kids and so she's getting a lot of useless advice and input and is feeling pretty discouraged.  😞

Anne

I think, for a general overview, you can’t go wrong with Tony Atwood; it’s been so long since I was doing this that I don’t remember what he has to say about parenting, though.

This, WTMF, was the only community I took part in. As with so many other things, the help I received here was invaluable, but a homeschool board might not be to her taste, so maybe others will have more specific ASD-related suggestions. If she does want to read or post here, I’m sure people would be helpful.

Hands down, the best advice I got wasn’t even specific to ASD. It’s from The Explosive Child,* by Ross Greene: “Kids do well when they can.” Just assume that if your kid had the ability to succeed in whatever is a problem, they would. If they aren’t succeeding, it’s not because they’re rebellious, or stubborn, or uncooperative, or whatever pejorative adjective people might be tempted to apply. Assume that if they could meet your expectations, they would. You can help them learn skills that are lagging, especially by getting a diagnosis and professional assistance, but also on your own. 

Default to believing the best, not the worst. Default to rewarding good behavior, not punishing bad/undesirable behavior. Make sure your kid knows you love them, are proud of them, and believe in them. Listen if they want to talk. Give them time and space to calm down if they’re upset. Intentionally carve out time to do things they care about, with them. If you can’t do what they’re doing, watch them, and talk about the things they care about. Support their special interests, whether that means supplying materials or signing them up for a class or providing storage space for a collection. Respect the kid in front of you.

The worst thing we did was to base our early parenting on a notion of consequences for bad behavior. We were trying to get professional help at the time, and were following the instructions we were given, but we didn’t have a diagnosis, and the therapists we were working with didn’t have a clue about autism. Piling on consequences, for behavior that our kid did.not.have.the.ability to control, was terribly detrimental. All the consequences did was to increase her stress and decrease her ability to calm down and function. Life got better when we stopped that. Later, once we were working with professionals dealing with autism, we did have some consequences, but carefully chosen, and planned to fit into our overall therapeutic goals.

Once your friends get a diagnosis, they’ll also get suggestions for what comes next. Hopefully there will be concrete ideas which will help. In the meantime, I hope maybe some of this will.

*Not all kids on the spectrum are explosive, obviously. That’s part of why it’s hard to offer advice without knowing more about her situation. But the advice is good regardless. The book is worth buying and reading.

[Rosie_0801]

4 hours ago, Storygirl said:

One thing that may be helpful is for her to know that Asperger's is not a diagnosis that is given any more. Instead, the diagnosis is Austism Spectrum Disorder.

Searching for Autism Spectrum Disorder is a great way to find the medical, deficit prominent information too.

[Rosie_0801]

3 hours ago, Anne said:

Thank you all!  I think at the moment she's just trying to figure out how to parent this kid better.  Does anyone know of any good online communities?  I think her friends have NT kids and so she's getting a lot of useless advice and input and is feeling pretty discouraged.  😞

Anne

Treat the kid as though she likes them.

Really, that is the most important thing to do, because most of the world will make it very clear that we really oughtn't exist.

[Hannah]

My daughter was diagnosed (by a team using ADOS) at 15. The diagnosis helped to focus therapy on explicitly teaching social skills, which greatly reduced her anxiety.  For her it helps to have scenarios worked out, so if the other people does this, then I do that.

I did not realise how hard it is for her to read other people.  She had to be taught how to read facial expressions like a raised eyebrow or a frown, body language and tone of voice.

We practiced things like how to make small talk, active listening and when it's OK to share your (in her case always strong!) opinion and when to hold back and rather text me the story instead.

She wanted to go and chose to stay in high school, but it took a huge amount of effort for her to navigate the NT world and get through the day. Her diagnosis helped us to understand that and to work out how to recognize overload and tools like deep breathing and listening to music to relax and settle.

She started university this year and it is going extremely well. She has made a few friends and is managing academic life. I would not have thought that possible 4 years ago.

 

 

Edited April 5, 2023 by Hannah

[bookbard]

Yellow ladybugs is a group devoted to girls on the spectrum.  Check out their website, and I believe there are online support groups for parents too. 

Yellow Ladybugs