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Wednesday, November 27, 2013

The Huffington Post article

Last week, I was interviewed for an article about autism in girls by a reporter from The Huffington Post.  Here's the article--- link.  Being interviewed was an interesting experience!  It was much more nerve-wracking than I had ever pictured it being, not because of the reporter, who was very nice, but because I think I do better writing things down than talking about them live.  I can think about what I write here, but when talking, that internal edit has to be done much more quickly, and I kept worrying I'd say something wrong.  We talked about a lot of things, but the quotes in the article of course were mainly about the thrust of the topic of the article---how autism in girls is rarer and sometimes less easy to see.  I told the reporter before the interview I wasn't sure I was the ideal person to talk to, because Janey's autism isn't subtle.  Strangers on the street can diagnose her.  But the article is actually making me think more about why Janey wasn't diagnosed until she was past 3.  I don't think she was autistic before that.  I think she regressed.  But I know, from what I allow myself to think about before she regressed, that there were subtle little differences in her.  She talked much more to me than to others, and even close friends have told me they questioned how well I said she could talk.  She had a few odd behaviors, and once in a long while, I'd have a moment of wondering---is all okay here?  And there was her very, very late walking.  She didn't walk until she was past 2.  Was that just slow physical development, or something more?  It's very possible that her being a girl gave me just that extra bit of blindness to what was coming.

One thing I did want to clarify from the article is it saying Janey is non-verbal.  I didn't say that to the reporter, but I can understand why she might have thought it (if she didn't read my blog much).  Janey is certainly low-functioning, and a lot of autistic people who are low-functioning are also non-verbal.  But Janey does talk.  She is not really very FUNCTIONALLY verbal, though.  Her talking is of a limited kind.  She requests things, which is great.  Most of her talk is in this formula "I want bacon.  Bacon, please.  Bacon"  You can put anything else in the place of bacon, but she say it in that same way every time.  The rest of her talk is mostly delayed echolalia.  She recites parts of videos, TV shows and sometimes things people have said live to her.  Sometimes, she does this in a way I call in my head "cut and paste" talking.  She picks from her store of lines something that has relevance to what is going on.  For example, if she's made a mess and we are cleaning it up, she says a line from Kipper "I can't play with you right now.  I'm cleaning up YOUR mess!"  Or if she's in a hurry to get something to eat, and we are taking too long, she says "Wait for the milk!  Wait for the milk!", another Kipper line.  Janey also sings a great deal.  Her singing has never been affected by her autism, in that when she regressed in other ways, it didn't seem to affect the musical part of her brain.  She can sing probably thousands of songs, in perfect tune and with all the lyrics.  It's never done on command.  She's like a iPod set on random, with a song she might have heard years ago suddenly popping up.  The exception is Christmas carols, which if I start one, or even just say the name, she'll usually jump in and sing.  Her love for Christmas music is a huge part of her life.

If you are reading this blog for the first time after finding it from the HP article, welcome!!  I am thrilled and amazed, always, to have people from all over the world reading what I started out as just kind of an on-line diary of life with Janey post-diagnosis.  It's turned into something more---a way for me, and I hope for others, to feel less alone, to know there are others out there with autistic girls, all of us doing the best we can.  I hope if you are new to this sometimes lonely journey, you will find a place here to help just a little.  I'm thinking of all of you, and, on this pre-Thanksgiving day, thankful to all who journey along with me.


Sophie's Trains said...

I saw the link shared on another friend's Facebook page and I was like "hey, I know this lady!" You know as a person with a journalism background I know they take the quotes that suit the style of article they were planning to write anyway. I know I have done that myself. But I think she did do a nice job, raising awareness for girls who apparently "don't get autism". People still do tell me, if autism "isn't only for boys?"
It's interesting you mentioned her regression. Sophie's regression has been on my mind lately too, I even reposted my first blog post on Facebook. My grandmother had a stroke a month ago and it brought back a lot of memories- she lost speech, she seems to have lost lots of comprehension, she can't communicate by eye gaze, pointing or shaking head yes/no. And she became left-handed. (That's why the hand question couple days ago). It made me revisit the stroke/hemorrhage theory in Sophie's case. Even my mom said "hmm grandma is like Sophie now".
I'm glad more people will read your writing and meet your awesome Janey!

Unknown said...

Great article! My girl, her nickname is Age, is in her 20s and has autism and epilepsy along with a ton of other problems. Autism is rare in girls. I never ever met somebody like my girl. She has cognitive age of a 8 year old and suffers from daily seizures and constant biting and scratching. She's also a huge head banger.

I just read your one post about how janeys mood changes extremely fast for no reason. Age is the same exact way. We never know what triggers them. We have done every single thing in the world to stop her behaviors. She's on a gluten and dairy free diet. Been to holistic doctor, takes certain supplements. Been to acupuncture. Etc. Even went to a DAN doctor. We enrolled her in jiu jitsu which helped her aggression a lot. She would just attack random people for no reason. All in all I figured if she is bathed daily, has a daily bowel movement, eats a lot of veggies(this is where a lot of shakes or purees come in),sleeps we know that she is happier that way. It's extremely common for autism to have very fast mood swings.

What has helped age is making her room a place she can go to escape from reality if things get tough. 2 weighted blankets. Weighted hat. Weighted lap. 3 noise machines plus the app on her ipad. Air purifier cu as age got older her allergies and breathing got worse which is whole another journey at that. Got a candle with her favorite smell(which takes time finding what that smell is sometimes since they are all so sensitive). All the windows are blacked out. She has a personal AC and heater cuz of her other conditions. She's severely allergic to the cold and has seizures in the heat. Also needs to avoid the sun cuz of her rare skin condition the sun thins her blood vessels. Never. A. Dull moment. Ha ha. We also have a therapeutic swing in our shed. She Loves it! And a body sock for therapeutic use.

Due to her constant seizures her mentality of functioning has since lowered to around the age of a 3 year old a lot of the time. So that doesnt help either and of course many doctors cant figure out why shes seizing so much. Except she's been on tons of meds for mood swings. Seizures. Muscle relaxers. Etc. they all made her even more aggressive and not sleep. It was a very scary time. She can't even take allergy meds cuz they make her aggressive. Just recently stopped allergy shots cuz they were causing her to have seizures. Allergies itself cause her go head bang and bite herself so every thing in the house and her room is constantly cleaned. So were stuck just going with the flow cuz it's like a ticking bomb and we don't know what could trigger a flip out.

Have you ever tried a weighted vest in outings? Or noise canceling head phones? Or let her use the iPod when she's out? Age constantly has her iPod with her and EVERY song is on repeat constantly. Also has her iPad to help her communicate and some apps like giggle bellies which she loves. We also have noise canceling head phones to help if noise bothers her. We also began to notice lights bother her and she won't wear sun glasses or glasses even though she needs them but she will wear hats. Loves the sensation on her head. So she' has a ton of hats and hoodies. She now goes out with less a problem. Still got to keep her close cuz she's a wanderer and will bolt. No fear of anything. But it helps knowing less meltdowns. We also now bring her favorite snack wherever we go and water. They all help. Age is a big biter too. Our vocabulary consists daily of "no bite".

She was in a day program but they knew she was aggressive and used her to fight other autistics Or also would leave her sitting in a chair almost the entire day so when she came home she was in full blown attack mode. We have since pulled her out and has a 1:1 who helps her. If you ever feel lost or need any advice. I might be able to help.

Antti said...

Ha, my internal editor tilts occasionally even when I write!
As I have understood it, the regression seems to be prone to occur around the age of two. I have a theory that it might be related to the natural development of the brain. At the age of 2-3 a special programmed loss of a significant number of neuron connections occurs. (It is an important age concerning the development of the language and Ville's epilepsy is thought to be especially harmful at that age.) Perhaps something goes wrong with the process or something is already wrong and becomes manifested.
(I hope my editor made it.)

Crimson Wife said...

I didn't understand the difference in symptoms that girls with ASD often show compared to boys with ASD. I knew by 18 months that she had a speech & language delay, and she was diagnosed with global developmental delay at 24 months. But I had thought she was "too social" to have autism because she was sweet, affectionate, loved to be held, and very much wanted to interact with others (even if it was in a dysfunctional way). Definitely not the stereotype of the loner who hated being touched.

It wasn't until she had 4 different evaluations around her 3rd birthday with all of them agreeing on the autism diagnosis that I came to accept it.

Crimson Wife said...

Forgot to mention earlier that the fact my DD did NOT experience any regression (only a slower-than-typical development) was one of the things that made me think she didn't have ASD. If she had lost skills, that would've been a big red flag. But it's hard to know when to worry with a toddler who just seems "young" for her chronological age. The discrepancies between my DD and typical peers is much more obvious now at 4 yrs. 10 mos. than it was back when she was diagnosed 2 years ago with ASD and especially 3 years ago when she was diagnosed with global developmental delay.