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Monday, November 19, 2018

Our Family's Second Autism Diagnosis


My daughter Rose is the light of my life. I can also say that, at the very same time, without a doubt, she is one of the biggest challenges in my life. Ever since she was born, I've felt that my life has been unraveling, and I've been slowly falling apart.

Rose's smiles are bright enough to be seen half a mile away. Her tantrums are at the exact decibel to feel like they're shattering your eardrums, and if not that, your sanity. And they're frequent.
She is extremely intelligent and uses her smarts to see just how much trouble she can make.
She has no sense of danger. No sense of safety. No sense of personal space.
I've been known to call her an Energizer Bunny on steroids.

I thought I was a good mother and knew what I was doing.
Until she was born, that is. I realized I had no clue what to do with her.
So many times I turned to people asking for advice on how to parent her. So many times the advice I got was so simplistic that I knew it wouldn't work with her.
I asked on forums of gifted kids. I hoped that maybe the reason everything I tried didn't work with her because she was too smart and strong willed for the advice being given (distracting never ever ever worked with her, for example) but even then very little worked.
It came down to this: none of the parenting advice I got actually worked with her because none was tailored to her. The standard model didn't work with her.

And though in theory I strongly believed in homeschooling, I was counting down the days until she was old enough to go to preschool paid for by the state, because I needed her out for a couple of hours a day so she wouldn't destroy my house and my sanity.

I didn't know why Rose was so hard to deal with, so hard to parent, so hard to teach. Being her mom made me doubt myself. Made me think I'm this horrible and incompetent mother. Because why else wasn't I able to make headway with this incredibly headstrong girl? Why were none of the things I tried with her working? Why was being her mom making me fall apart?

I suspected autism, honestly.


My second son, Ike, 9 years old, got diagnosed with high functioning autism (aka ASD 1) at the age of 6.5. I have a parent with ASD 1 (previously known as Aspergers) and 3 siblings with ASD 1 as well.

But I just wasn't sure. Neither Rose nor Ike showed the classic signs of autism. Not the delayed language. Not the inability to look people in the eye. She talks to people, even strangers. She's charming and friendly and not someone people would look at her and say "Oh, she's autistic".

I got Ike diagnosed at 6.5 with someone privately, not through the local early intervention system, specifically with a test that could only be done from that age, with an elderly gentleman who spoke English (an imperative because my children didn't speak the local language, which factored in to diagnoses) and had experience with gifted kids. I specifically wanted someone who was familiar with the gifted population, because I knew a lot of times there's social awkwardness that comes along with a high IQ that can be mistaken for autism. He was great to work with, but unfortunately he passed away not long after that, so I couldn't even ask him who he'd recommend I go to with Rose for an evaluation.

Even with Ike, I was delaying for so long getting him diagnosed because it cost a great deal of money, and though I knew disability payments would cover what I spent on the evaluation, it was hard to shell out that money without knowing for sure.

With Rose, I was even less sure and even more skeptical about spending money on an evaluation. I had heard many times that autism in girls comes out differently than autism with boys, and I suspected that that was why I wasn't sure about Rose.

I posted on Facebook one time asking if people thought she had autism, and they just weren't saying something because they didn't want to upset me, and a fellow autism mom said "What do you mean, she doesn't already have a diagnosis? I thought that was obvious!"

But still I wasn't sure. I didn't have the money to spend on a gamble.

And then one day I saw a listing calling for parents of girls with autism and suspected autism, between the ages of 6 and 12, to take part in a study on girls with autism, and how it differed in presentation from boys with autism. Included in this study was a free evaluation with one of the top autism experts in my region. I thought it looked cool, but that it was a shame that Rose was too young to take part, because I figured anyone involved in the study would be able to tell if a girl had autism, even if presenting differently than a boy would.

My friend Emily, knowing that I suspected my daughter had autism, is friends with the head of the study and bumped into her at an event and started speaking, about my daughter specifically. She told her that there was another group for the study, of preschool aged children, and the head invited my daughter to take part. Emily passed on the message and got me in touch, and we were invited into the research department, first for a parent interview, then an evaluation for Rose...

That was a few months ago. I spoke to the head researcher the evening of the evaluation and I understood from her then that she was just borderline, had all the critereon according to the DSM but just barely didn't have enough to be diagnosed. But I guess that was before she added the numbers and went through her notes again.

Because today I was invited in to meet with her and got results that sort of floored me. Not only does Rose have autism, she doesn't even have ASD 1 like her brother, grandparent, aunts/uncles. She has ASD 2, medium functioning autism. The evaluator said that that was only because she was a girl. Had she been a boy, she would have gotten the diagnosis of ASD 3, low functioning autism, but as a girl, she presents higher functioning.

Additionally, she has a very high IQ; even with her really low functioning, her IQ tested as really high, but its clearly even higher than the numbers showed because of her autism. However, her social IQ and functioning IQ are really low, 3 deviations apart from her tested IQ. She's the poster child of what they call 2E, twice exceptional, gifted with disabilities.

Do you know how incredibly validating that was? All these years of struggling and self flagellation because I wasn't a good enough mom to figure out how to get this daughter to act "properly" only to get the answer that its not me, but that this kid has serious enough issues that she doesn't just qualify for an autism diagnosis, but a medium functioning one at that.
All these things that people were telling me, that if I just was "firmer", just did xyz, I'd get her to shape up, all those can now be thrown in the trash where they belong, because I didn't make my daughter this way; she's simply been incredibly challenging from day one.

In addition to validating, I'm also really glad to have answers, because with answers comes treatment and help. She'll now qualify for early intervention in school, and be able to go to a school for kids with autism, where she can get many therapies throughout the day, all within the school so I don't need to run around with her from therapy to therapy, and pretty much free since its public school.
My son has thrived so much since joining his school for kids with autism; I can't wait to see what kind of changes my daughter will have, what type of behavioral improvements she'll get once she gets all the therapies she's now entitled to!

There are many different treatments and things that people do for kids with autism, to help them succeed as well as they can in life. Ike's school doesn't do ABA therapy, which I find problematic, but they do what is called Floortime and it is much better. They also have social skills classes and people that teach the kids how to communicate better, in addition to getting occupational therapy. Some people take their kids off gluten and dairy to help minimize their autistic behaviors; my three younger children including both with autism have been off gluten for years because it affects them behaviorally, but cutting out dairy didn't make any noticeable difference. Another thing I might look into is CBD oil, a natural and proven treatment for autism if the therapies Rose will be getting in school aren't enough.

In addition to all that, I have to say that as a single mom, disability payments will really be helpful and will mean that I can work fewer hours and be home for my kids more.

So how do I feel about this diagnosis? Will it change anything about how I will relate to this daughter of mine?

Honestly, I think getting an official diagnosis is going to help me be more empathetic to her and why she's that way. Although I suspected it for so long, being able to clearly say "She's doing xyz because her brain works differently because she has autism" will hopefully help me be more understanding, even if it is tinged with frustration.
But more than anything, it gives me hope because it means now she can get therapies that will hopefully cause these difficult behaviors to either minimize or for her to learn to funnel this energy of hers into more productive means.
It also allows me to have a good solid answer to people who are telling me off for my daughter doing specific things that no, I'm not a bad mom, my daughter just is autistic.

When I got the official diagnosis, I will admit I cried tears of joy. So many people are afraid of diagnoses closing doors. For me, I know that this diagnosis will just open so many more doors and allow our entire family to benefit.

Additionally, I'm really happy to be part of this study on girls with autism, so that hopefully many more girls around the world can benefit from this study in the future.

Do you have any kids with autism? How do you feel about getting diagnoses? 
PS if you are local to me and have a daughter you suspect is on the spectrum, or even with an official diagnosis, they are still looking for people to be part of this study. Email me at pennilessparenting@yahoo.com and I'll put you in touch with them.

17 comments:

  1. I'm glad that Rose will finally be getting the help she needs. Have you considered the possibility that Ike's positive changes can be attributed to the fact that he's been able to interact more with people outside the home? Homeschoolers can definitely have great social skills as long as they have great role models to follow, but you mentioned before that you had a difficult childhood and had very few friends growing up, so perhaps you may not be equipped to teach your kids proper social skills and behavior.

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    1. My eldest doesn't have the same social issues that Ike does. No, the reason why he's improving is the intense social skills therapy he gets in school. Its not about being out of the house, its about intense therapy he's getting.

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    2. My social skills are just fine, thank you very much. I had a difficult childhood for reasons that I've never shared on my blog and don't plan on it, but it doesn't affect whether or not I can teach my kids good social skills.

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    3. I never comment, but my jaw literally dropped when I read this. This is so incredibly rude, judgy, and out of line. Penny, your gracious response tells me everything I need to know about your social skills...

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    4. That is seriously the rudest post! Makes me so angry. Completely inappropriate and unsupportive and ridiculous!

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    5. As a person who is autistic herself, i just read this as a random question. When i would be asked a question like this i wouldn't be offended at all!
      In fact, i have been asked this many times because of the fact that we do homeschool and that i'm in the spectrum. To each their own i guess. I think that's one of the benefits of autism, at least for me personally. I never get offended by regular questions.
      And by this i don't want to be rude and if i offended someone by this comment then i apologize in advance.

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    6. When I read this question, it seems no different from a question asking a homeschooling mom who's not strong at math if she's concerned about not being able to teach algebra to her kids. I guess to me, social skills are just like any other skills (math skills, musical skills, artistic skills, etc.). It's not rude to say that someone's not musically gifted, so why would it be rude to say that someone lacks social skills? Also, to the anon above who called the question inappropriate and unsupportive, I think Penny is sharing some happy news here and does not need her reader's support. Receiving an official autism diagnosis is not a tragic event that calls for support or sympathy.

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    7. Except I've never said anywhere that my social skills are lacking. So assuming that about me is offensive.

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  2. Your daughter is adorable! What a relief it must be to finally have some answers. I'm so, so glad that this will open some doors for her and you, and that it will get her started with the programs that she needs to succeed. :)

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  3. None of my kids have autism, but my oldest son had something called sensory integration dysfunction when he was younger. And my 2nd son has mild Tourrette's. With my oldest, I remember wondering and wondering why he had these "weird" issues. He was sent for an OT evaluation by his teacher for his fine motor delay and the OT picked up on the other issues and dove in deeply, figuring out what was going on. I'm so grateful - and I also felt like crying when she started asking "does he do this thing, does he do that thing!" She nailed all his behaviors without even trying and it was like she "knew"my kids. It felt so freeing as a parent to know that he wasn't strange, that it wasn't anything we were or were not doing. His OT helped so much and was so life-changing in such a short period of time. He's now 22 and very successful! And I'm eye-rolling at the previous comment. And your very nice, measured response. You are WAY nicer than me! :)

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  4. Glad you have a diagnosis and can get the help for her that is needed. I work in therapy and have dealt with various kids on the spectrum and the amount of help available is excellent so this will be great for her.

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  5. There is so much "YES!" going on my head reading this post. The whole judgy thing that people do when watching your kid, and then you internalize it because you don't know what else it could be causing it; and the relief when someone gives you services and takes the schlepping to appointments off your hands because they are at school.

    And also, how much better my relationship with my kid became when I realized he wasn't just being disobedient, didn't hate me, wasn't a "bad kid."

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  6. I have friends with kids who are autistic. I'm glad you were able to get her diagnosed. I think it's very important to learn how to interact with differently abled people.

    Autistic children are different. The ways you interact with them, teach them, are different. They have distinct needs. I've seen children thrive when their needs are met. Ignoring that creates so many issues.

    You are way too polite to the above poster, by the way. Does anyone consider that parents of autistic children homeschool at a higher rate so that their kids needs will be met? It's not that homeschooled kids are bad socially because they are homeschooled.

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  7. I agree that the first step in addressing an issue is identifying it.As a mother this diagnosis takes the frustration and feelings of inadequacy so you too can funnel all your energies in more constructive ways to help her.I believe that your daughter will be happier around people that understand her better- that alone will take part of her burden away.Good luck!

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  8. So glad you were able to find that validation without breaking the bank. Never doubt your parenting, just reading your blog tells me your a fierce Mama bear. Be proud, you rock!
    My niece is high functioning autistic. She was born in 1993 and I was on the internet by 1997. When she turned 3 she stopped talking and just smiled all the time. I looked online in 1997 and told my sister "I think she's autistic." But she didn't listen and was finally diagnosed in 2003 because her public school pushed for it. Wish my sister had listened, but some folks just refused to see their perfect child as anything but.
    Glad your doing what you can to ensure your children have the best chances in this world with their education and emotional health. Wish more parents were like you.

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  9. I have a child with what you might call the level 2 ASD. He's an adult now, living on his own with support.
    And I have a child who is 2E-incredibly bright with dyslexia and a genetic neuropathy. He's in college studying engineering. But - I remember those early years - how hard they were and also how wonderful when each child made a new step and went to the next level of development. You've got this. Diagnosis opens the doors and answers questions. Keep going, and don't give up.

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  10. Please look into Anthony William The Medical Medium. He writes all about autism and where it really comes from-Heavy Metal Toxicity- and how to improve if not even cure it.Good luck

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