My 22 year old daughter just diagnosed. New and confused.

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Hi,
I am a mum and would like some constructive help. Thanks.
This is my first time to this forum.
My daughter 22 has just been diagnosed and I am feeling overwhelmed and a bit lost.
This is all new to me!
Is there anyone out there that has been through your daughter being diagnosed in their late teens early 20s that can help me?

Thank you

My son is only 8, but I found the book Asperger Syndrome by Tony Attwood to be very helpful when he was first diagnosed. It would be relevant for an adult child as well.

Some books you might find helpful:

Asperger's and Girls by Tony Attwood et al.
Aspergirls by Rudy Simone
Congratulations! It's Asperger Syndrome by Jen Birch
Asperger Syndrome In The Family: Redefining Normal by Liane Holliday Willey
22 Things a Woman With Asperger's Syndrome Wants Her Partner to Know by Rudy Simone
Parenting Girls on the Spectrum by Eileen Riley-Hall *
Girls Growing Up on the Autism Spectrum by Dr. Shana Nichols et al. *
Girls Under the Umbrella of Autism Spectrum Disorders: Practical Solutions for Addressing Everyday Challenges by Lori Ernsperger & Danielle Wendel *

The ones with the asterisks * are specifically for parents, although they are usually written for parents of young children. I have not read them so I cannot comment on how valid they are.

I bolded the 22 things because that book contains lots of our general things and coping mechanisms that not just out partners have to deal with, but also that our parents do, especially once we are adults.

The first 2 are good general introductions to understanding.

Thank you I have ordered some of these books.
I am very pleased to hear of the ones for adults to read. My husband and I have will have to get some more for us.
I have two by Liane Holliday Willey which have been great.
Thank you so much again!!
Anymore ideas, helps please don't hesitate to let me know.

I'm a girl that got diagnosed at 23 and if your daughter is anything like me, she will educate you a lot on it. It soon became my special interest and my parents got overwhelmed with information after my diagnosis, they didn't even need to read anything!

I read 3 books after my diagnosis and I didn't feel like any of them correctly described me, only parts of the books did. Being on this forum is where I got a lot of my information. I realized how much I could relate. Is your daughter open to being on this forum? She may really enjoy it.

You're blessed to have an aspie girl, I think we're pretty cool, but I'm biased

Thank you Soccer22

She is still getting used to the diagnosis!

And I agree that we are blessed to have an aspie girl!! You are all pretty cool!!

I will see how she feels about joining the site.

There is also a Tony Attwood one that her psychologist has suggested.

She is not an internet girl, she is a writer and artist.
However I will encourage her and let her process the idea.

Thank you for letting me know and if it is ok I may call on you if I have any questions.

Parents sometimes go through some form of the five stages of grief when their child, regardless of age, receives a "permanent" diagnosis, even if it is as beneficial to the person as Asperger's Syndrome can be. This may mean that you may have thoughts towards your child or towards the situation that may seem cruel or unjustified; this is a natural part of the process.

For my father, the stages went somewhat along the lines of:

Denial: "Oh, WerewolfPoet does not have autism."
Anger: "WerewolfPoet does not have autism, damn it, you hear me?!"
Bargaining: "God, please don't let it be autism. I'll donate to St. Jude's like I've been meaning to if you give my daughter a good life."
Depression: "It's all my fault, isn't it?!" (FYI: It is not your fault, Caro69 or any other parent)
Acceptance: "So maybe my daughter has a touch of autism, but you know what? She's an intelligent, caring young lady, and she's going to be just fine."

Hopefully, your journey will have much more of the last stage than any other stage.

As for your daughter, she may find this Self-Affirmation Pledge by Liane Holliday Willey to be helpful when she is in a darker spot:

If she does decide to join WrongPlanet, there is an Art and Writing subforum that she may be interested in.

Best of luck to the both of you on this journey.

Thank you WerewolfPoet,

I think I always knew so I wasn't surprised at the diagnosis.
I have though blamed myself...'this is my fault!!' Even though I know it is not.

What book is the Self-Affirmation Pledge?

The last stage is the one that we would like our daughter to reach.

She has been told by someone that now she has a label, we have told her that she is herself and that she has a special brain and just needs to work out how to use it like she uses a pencil or paintbrush or fountain pen.

I hope that this was the correct thing to say.


Thank you for letting me know that there is an Art and Writing subforum, I am letting her take her time asking about those sort of things and I hope she will follow up on them sooner rather than later.

You have been very helpful, thank you once again!

Loving Lampposts is a nice general documentary with lots of snippets of parent and autistic adult interviews. It's available for viewing free on hulu, where I watched it.

Temple Grandin has a bunch of videos online, at TED and at Cornell.

For figuring out how the brain works, a college level introductory psychology class, lifespan or human development, and neuroscience classes might be helpful. I like the books Thinking Fast and Slow by Daniel Kahneman, The Selfish Gene by Dawkins, Jane Goodall's In the Shadow of Man, Animals in Translation by Temple Grandin, and The World Until Yesterday by Jared Diamond.

OP, I think that's exactly the right thing to say. It's the truth-- she is who she has always been, she just has a word for it now. It's a specialized tool that she is going to have to learn to use-- having a name for the tool, and the way in which it is specialized, is like having an instruction manual (however obtusely written it may be) for the tool.

Hang on to that thought.

Because your daughter is going to have a hard time getting there. In a world where professionals want to pathologize her, people on the TV want to call her a monster, unscrupulous "therapists" are going to be more than happy to tell her she's broken and help her apply for disability, and a thousand other things are screaming "YOU ARE NOT OK!!" hanging on to that attitude is tough.

She has to already think she's not OK-- a common side effect of growing up ASD is knowing, by the time you are 8 years old or so, that you are "different" and that "different equals less." It's just a fact of life in the stupid culture we've had going on for the last 100 years or so.

These are things she's going to have to get over. You can't get her over them, no matter how obvious it is to you. All you can do is listen and love, and keep pointing out the ways in which she's wonderful, just as good as anyone else, doing just fine thanks, and pointing out the ways in which she needs to use her wiring a little bit differently.

I wish I could tell you that, if you do that, she'll be fine. But I've known that for over a decade. I've spent that time struggling to tell myself the same things, surrounded by people who try to tell me the same things. Sometimes I make it, sometimes I don't. Some days I'm OK, some days I'm not. I still see a therapist 2 to 4 times a month...

...and we still spend most of our time working on, "You are not broken" and relatively little time working on how I need to interact with people to get them to listen to me and minimize misunderstandings and problems in life.

I was diagnosed in my early 20s, so thought I'd chime in. When I first heard about it, I pretty much dismissed it out of hand. Even when I was formally diagnosed, I was in a bit of denial. I think what happened was that I had to make a very radical shift in my perception of myself--and change is never easy for someone with AS. And I also think that at that time I didn't have a lot of self awareness. I think the best thing you can do is not push the diagnosis on her--she might dig in her heels even more. But buy some of the above suggested books (especially Aspergirls), make the literature available to her, and I think the more she reads, gets a feel for it, the more she'll come around.

For the record, I'm a female who self-diagnosed as "wierd" at about 6 or 8, informally diagnosed Asperger's at 19 or 20 (when it fits, it really fits), and wasn't formally diagnosed until I was 33.

At the time, I was trying to rule it out so I could stop seeing myself as broken and get on with my life. Silly idea-- because I found out what I'd known all along, and still ended up deciding that I'm not really broken and getting on with my life.

Not that getting here was easy, or fun, or in any way linear or seamless. Such is life.

Thankyou everyone!

This makes me feel so much better.

I have more books to order!

Anymore ideas would be great.

Thanks,

I was struck by something you said. You say you think or feel as if this is your fault.

How is that possible??

If she's 22, that means she was born in 1991. She was three years old when Asperger's hit the DSM-IV. So before that, there was no name-able problem that could have been found. So much for early intervention.

She entered school-- when?? 1996, somewhere around there?? Asperger's existed, but it was not well-known. Teachers would not have known about it. Even special-needs teachers would have known little or nothing-- if you had had a reason for one to see her. Which there's a good chance you didn't, because Asperger's girls do well academically a good bit of the time.

What were you going to do-- trot her to therapists, psychologists, and psychiatrists because "I can't put my finger on it, but something isn't quite right??" You might have found one that could finger the "something," but up until about 2000, it would have been rather unlikely-- IF she had been a boy whose symptoms presented in the most common fashion.

We didn't really start knowing any credible anything about Asperger's and girls until about 2006 or so. Believe me-- my oldest daughter entered school in 2007. One of the things I brought up to the guidance counsellor was, "I have Asperger's. I have about ruled out the possibility that she got it, but I'd like another pair of eyes looking." Answer: "Really?? I would never have guessed. Isn't it really, really, really rare in girls??"

By 2006, you had a fifteen-year-old. Who had, if she followed the typical girl pattern, probably learned to hang back, imitate, and use all those other coping and compensating skills that make girls less likely to have "problems" that would raise a red flag (but more likely to become anxious and depressed).

Even if you could have, practically magically, picked it out some how...

...dear lady, up until the last six years or so, the majority of the "help" available has been so misguided that it probably would have done her more harm than muddling through the hard way. You could not get her what was not there.

We have already thoroughly debunked the myth that autism is caused by cold and unaffectionate parenting, permissive parenting, or too much love.

That leaves your DNA. She may, in fact, have gotten it from your side of the family. On the other hand, it could have come from her dad's side. It could have been a de novo mutation. Said mutation could have resulted from any one of a number of factors that we still can't identify. I read a lot. I won't say I'm on the cutting edge, but I read a lot, and ANYTHING with the words "autism," "Asperger's," "genetics," stuff like that catches my eye. The term "epigenetics" entered my vocabulary two or three years ago. Even if it was something you did that caused a slight re-arrangement of her genetic code, you had absolutely NO WAY TO KNOW.

It is logically, rationally impossible for it to be your fault. Even if it were, I can tell from your comments that you think she's pretty darn cool and it would not cross your mind to "take her back." That's NOT just your mother's eye. She is, in all likelihood, actually pretty cool.

Sorry if I've gone on too long, but I catch myself beating myself up with the "It's my fault" routine with my six-year-old. It's a useless sink of time and energy, and can be very destructive. I'm trying to give you every tool I can think of with which to beat that thought out of your head, because I really don't want you to have to go through what I've put myself through. It isn't good for you, or for your daughter either.

You may feel overwhelmed and lost and that is understandable but with what you said above you are already have taken a big step in finding your way. That attitude will be of great help to her. I speak from experience even though I was just diagnosed in my 50's. We had no clue why I was "different", when I was a little kid my parents gave me similar advice and stuck with it through the trying times it has been a great help.

If she is not into the internet check to see if there are any support groups in your area. Otherwise the advice you have been given has been good. That you are already following up is great.

Can you help me with my 21yr old NT she is struggling as she feels she is the older sister in many ways.
I do my best with them both, however I know my NT feels guilty going out and having friends even though this is a usual thing.

Her AS sister is envious of her as the NT has a boyfriend too and we see the AS becoming attention seeking when he is around.

Then we get I am such a loner looser, it is so unfair.

I have explained several times that she is only 22 and relationships take time. You cannot expect them just to happen when you want.

It makes me sad to see this division between them.

Is there a book or something that can help my NT????