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my long journey with my aspie girl

November 6th, 2021 at 01:06 am

I guess this is more a reflective post and not at all about finance but somewhere to write my thoughts and perhaps put it out there for other mom's of girls looking for answers.  This week my DK1 was diagnosed with autism at 11 years old nearly 12 years old. I remember I wrote on this blog how excited I was to be pregnant, and secretly thrilled to be having a girl (I really wanted one).  I remember my husband just hoping for a healthy baby and we were blessed to have a healthy baby girl. Amazing.  Spectacular. I probably spent the first year taking a picture a day to commemerate her life. 

Life with my girl wasn't easy. In fact it was super hard for a variety of reasons physically, mentally, and emotionally.  She was so hard but I never felt like I could complain or say how hard it was when so many other parents had it harder.  I heard about others being diagnosed with a physical disability or autism early.  Instead I had many services of early intervention and I knew something was wrong. She never slept and had so many sensory issues. 

I always felt something was different and observing from the time she was about 3 I could tell she was different.  But every evaluation, therapist, counselor told me she was fine.  She had sensory issues but lots of kids have that.  She was smart, talkative, intuitive, seemingly mature.  She was stubborn and difficult but that would "serve" her well in the future and was her personality.  She withdrawn nature was called shy.  Her introvertedness was personality. Yes she was in social pragmatics group from age 3 for her shyness.  But she never failed her evaluations.  They kept telling us that she was fine.  That she was just shy and quiet and needed some social skills.  Multiple evaluators said this. 

But what changed?  I noticed since they she never fit into a group easily.  She was less socially skilled than boys her own age.  She was less adept at being part of a group and never really played with other children.  She also lacked a lot of emtion.  She was very logical, smart, stubborn, strong-willed, and difficult.  She masked a lot of problems by being quiet, but it just seemed off. While she can make eye contact she struggles holding it.  She struggles having a conversation even with me.  A lot of answers are one word answers and she struggles to vocalize what she feels or thinks.  She has a hard time making decisions.

So why the problems?  All the benchmarks and studies and hallmark evidence are based on boys with autism.  Girls present differently.  Yet are judged on the same scale instead of their peers.  If it had been peer based we would have been flagged much earlier.  She obviously and very evidently behind her male peers let alone her female ones.  Yet even I as a parent knew something was wrong and worried.  But I let all the "professionals" tell me it was fine.  Tell me that we didn't need our IEP anymore.  That she was just quiet, shy, and introverted.  Nevermind that my mother's intuition worried me.

The mantra I've had has been I only want her to be happy. I really have felt tis way. I didn't care about her education and I was right.  She's gifted.  It compensated for a lot of things.  Turns out that her speech therapy and occupational therapy also might have helped masked the problem by teaching her to "mimic" appropriate behavior and responses.

On the autism scale she's not severe.  Instead she just has complete lack of social skills and social communication. Her verbal communication score was "very high" 95%.  Her verbal skills and matrix math skills were all 95%.  It's obvious when you ask her and force her to explain things.  But to hold a conversation?  Impossible.  Even now in school she struggles about talking to a teacher or other students.  This year she tested and did 8th grade math and english but according to the teachers hasn't talked to any students.  She placed at the 80% of 8th grade math as an entering 6th grader.  Her IQ score was 130.  But she hasn't spoken in school yet when she has to write and tested she was "very high" 95% again.  She also apparently has no friends.

She also looks so normal. She is physically perfect.  No ticks. no repetitive behavior, nothing out of the norm.  She is cute, nice hair, skin, teeth, great clothes.  Since we are "upper" middle class it shows in a way that being poor showed when I was younger.

Covid was hard and good at the same time.  It allowed her to develop a best friend. Something she's never had.  She's never had a close friend.  But this girl lived across the street and her parents both worked full time so she came over everyday.  It took about 2-3 months for her to finally break through my DK and start really talking but then she did and they became I think friends.  That BFF has been a godsend and amazing.  She totally gets my kiddo.  Her emotionally EQ is off the charts.  To understand that my kiddo can't talk to others she tells to others and explains.  She joked with my Kiddo and got her to smile for her school photo.  

But now the journey is different. It took us a long time to get here.  The struggle was and is real.  I guess I needed to vent and write about being a mom to a girl with "autism".  That I am a mom with an aspie girl and it was hard to get here.  The journey forward is just as challenging but in a different way.  Perhaps this is where I write it.  Perhaps on a blog. But now i'm just curious to see if others have found the same challenges for having a girl with autism.

7 Responses to “my long journey with my aspie girl”

  1. My English Castle Says:

    Oh, my heart goes out to you--and what a great mom you are. It's such great news that she's found a friend. Thanks for writing about this. I hope you can find other parents for support. We have a good friend with an autistic boy who is now 20. His autism presents very differently, but he's doing well. He's attending our university and has part time job. Wishing you all the best.

  2. Lots of Ideas Says:

    You are doing a good job as her advocate and her mom.

    There is a woman who blogs on Facebook as Diary of a Mom. She has an autistic daughter - more neurodiverse than yours sounds from your description - but she has good insights on advocacy and building on every child’s skills. She has a big following that is very supportive too.

  3. VS_ozgirl Says:

    So sorry for your struggles, it is truly great that she found a friend who gets her. Hoping that she will grow up to live a rich life though.. I have a friend whose two kids were diagnosed with autism when they were very young and they had lots of professional help in the years that followed and now you would not know that they were autistic. Hoping you can find the professional help for her to help her develop her social skills.

  4. CB in the City Says:

    My niece's daughter is autistic. She is quite a bit younger and was diagnosed early. I was quite surprised, since she seemed to me to be outgoing and confident, but in fact I have learned that she does not relate well to people. She seems outgoing, but she monologues, and she is stubborn rather than confident. She is in a Montessori school and seems to be doing well in that environment.

    My niece is a great mom -- like you are -- but she gets very tired, especially now that she has a son who seems to have some issues, too. I don't know whether he is autistic or ADHD. Time will tell. I have enormous respect for moms like her, and you.

  5. LivingAlmostLarge Says:

    Thank you all. I am reading diary of a mom and it's interesting. Some of this is still very overwhelming.

  6. ceejay74 Says:

    What a journey! I guess at least now that you have a diagnosis, you'll be able to find so much info about how to help her and yourself.

    One of my daughters is an interesting kid. Sometimes I find myself wondering if she's somewhere on the spectrum. Or maybe she's just quirky! We have trouble relating to each other in some ways and sometimes I feel like she's going through the motions of affection (though other times she's super affectionate and my biggest cheerleader), but she has a brilliant and curious mind. So far she seems happy, but if it ever feels like she's struggling it might be time to look into it. It's helpful (though discouraging) to know that it might take work and time to find any real answers!

  7. LivingAlmostLarge Says:

    ceejay I think because I have two girls I can see difference in their behavior a lot. It was harder because this was my first so the sensory and abnormal sleeping was bad. But a lot of the behavior i struggled upon watching and still now can see the difference.

    I don't know accomodations we'll get at school or ask for. But i do think that I want a better awareness of her struggles. I want the teachers to not just gloss over her because she's smart and finishes things. But to really see that she tries to participate and help her.

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