Another Autism Diagnosis in the Family

My third kid was just diagnosed with autism on Sunday. Current count- three out of my four kids.

I shared before about my stories getting my son Ike and daughter Rose diagnosed with autism, and what a ride it's been (specifically with Rose and getting reported to CPS for getting her evaluated). So you probably aren't too surprised that another kid of mine is also autistic, since these things are genetic, after all.

However, it took until now for us to pursue a diagnosis.

When I got Rose diagnosed at the age of 4, I had already suspected for a while that she was autistic, but I knew she wasn't the stereotypical autistic kid, since the stereotypical autistic kid is based on how white male children generally present, and girls often present very differently with autism. 

Since insurance in my country doesn't really pay for autism evaluations (ok, they sometimes do, but the quality is far from ideal unless it is an extremely obvious case) I knew I'd need to go privately for this evaluation. When you're tight on cash, this isn't an easy decision to make, since it is a lot of money to lay out. Yes, with a confirmed autism diagnosis in my country we can get disability for the kids, but even with Ike, I wasn't sure if he was actually autistic (since he looked people in the eye and didn't have a speech delay), and was very hesitant to pay for an evaluation since it wasn't a guarantee I'd get the money back via disability payments.

If I was nervous about spending that money with Ike, I was even more wary with Rose, because I knew there was a good chance whoever was evaluating her would miss it, unless they are specifically familiar with the female presentation of autism. A friend of mine connected me with a study on girls with autism, that involved a free evaluation as part of the study, and my daughter Rose was able to be part of it, and yes, she was diagnosed with autism, and it was for people like her that the study was created. 

Even then, I was suspecting that my daughter Anneliese might be autistic, but I said that if she was, it was less obvious than it was with Rose. I asked if there was more room in the study, but the age group that Anneliese was part of was already filled to capacity. Once we went through all the hell of getting a second diagnosis of autism for Rose (required in my country in order to get any benefits, at least a second diagnosis via a psychiatrist or neurologist) I realized that if we had that much trouble with Rose, there was no way we'd get anyone to agree that Anneleise was autistic, so we let that lie.

But then Anneliese was having trouble in school, largely because she still hasn't picked up the local language well enough, despite having been born here, and despite being in school in the local language since she was 5, and she's already 10. We realized we needed to switch her to another school with resources to help her (since her school was small and didn't have many resources) and as part of that we did a scholastic evaluation (called a psycho didactic) and the psychologist who evaluated her pointed out that she has some learning disabilities and definitely needs speech therapy. 

The thing is, locally, speech therapy at the age of 10 is not covered by insurance. It all is out of pocket. But she needs it, desperately. The one way it would actually be not out of pocket is if my daughter were in a class for autistic kids, since in my country it is autistic kids that are eligible for the most services, including speech therapy. Speech therapy has been a wonder for my 12 year old, Ike, also autistic, who has been in an autism class since he was in second grade, and with the speech therapy he went from saying a few words to mostly functional in our local language. If Anneliese could get that, it would help her out tremendously.

So I decided that I was willing to look into getting an evaluation for autism for Anneliese, even if it meant spending money on it because if there was a chance of her getting a diagnosis and then getting into an autism class, it would be worthwhile. But I didn't want to throw away my money on someone that wouldn't understand girls with autism at all and how they differ from the stereotypical autism. So I reached out to a group of parents of disabled kids and asked for recommendations and someone recommended this developmental psychologist who works privately evaluating kids for autism... and she was originally working as part of the study on girls with autism, so she was literally the perfect person to evaluate her. Since it was a lot of money to spend on this, and since the previous evaluation we did also recommended that we test her for ADHD, I asked if this psychologist could test for that as well.

I filled out about 4 different questionnaires about my daughter, had a private meeting one on one with the psychologist, brought my daughter to 3 different meetings with her, and tomorrow am going with my ex to get the final summary from her. But after the last meeting with my daughter, I was sitting on pins and needles and asked her if she thought my daughter was autistic or not, that I was having a hard time waiting until tomorrow, and she said yes, she is, and she definitely needs an autism class.

So... vindication! I was right! I suspected this already for 4 years and finally have answers. And yes, this language issue she's been having with our local language is autism related.

My daughter is actually really excited to get diagnosed with autism. For us, in our family, autism isn't this scary thing. It's this cool way people's brains work, and we definitely play up the positives here while also working on supporting the challenges.

I am looking forward to seeing where this takes us, and I really hope that we don't go through the same hell with my daughter's second diagnosis like we did with Rose. 

Wish us luck!

P.S. This was shared with Anneleise's permission. Respecting my kids' privacy is very important to me.

Penniless Parenting

Mommy, wife, writer, baker, chef, crafter, sewer, teacher, babysitter, cleaning lady, penny pincher, frugal gal


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  1. Well done getting everything you need to try to help your child, and wishing you much success. With a child with downs, I know that the right services are difficult to obtain, and so important to keep advocating. With that said, I wanted to add something about child consent. I once signed my 10 y.o. daughter (not the one with downs) up for a clinical study (interestingly enough, it was to help develop a blood test to diagnose autism), that was being organized by a neighbor friend (i am in your same country). It involved her getting a blood test (to test children without autism as a comparison). I spoke with another friend who is an adolescent psychiatrist about taking my daughter for the blood test to help the clinical study. My daughter had obviously consented (and there were prizes and a fun atmosphere to put the children at ease). But I was still a little nervous about taking her, and wondering if I had put her in a spot where she felt a little pressure to consent, as I kinda encouraged her, even just by asking her. My psychiatrist friend said it is something debated by medical ethics if the child can actually consent. I bring up this whole long story because it is a little uncomfortable to see a child's photo under the heading of a personal diagnosis, and wondering how she will feel when she is mature and better able to understand it. Though really, I think she will be fine and great about it, learning from you to be open and honest to help others. But it's just something to think about, if there is a way to keep her privacy a little bit more so she won't be embarrassed later on, which would also be her right and nothing to feel ashamed of if she were to want to keep it more private when she is older.
    Anyway, I do respect your decision, you are a wonderful mom and doing a phenomenal job.

    1. I appreciate your perspective, but autism is only something to be ashamed of if you raise your kids ableist. I'm not hiding this because "what if when she's older my daughter is ashamed of how she is" when she consents at an age that she is old enough to understand things.

    2. My son has autism I told him he has autism and I love him it makes some things harder and others easier . Autism is a gift no reason to hide it or be ashamed .

    3. For sure! I was not at all trying to say it was something to be ashamed of at all. I am so proud of my child with down syndrome. I am just sensitive to child protection on the internet, that's all. Sorry if it came across differently.

  2. I know what you are going through. My daughter was diagnosed at 18 months and by the time she was 2, she was enrolled in an early intervention program and started preschool at 3 years old. We were fortunate to have good special educators and right now she is in her second year of college as a music major and holds a part-time job. I hope your children do well and I am praying for them and the whole family. God Bless.

  3. The right diagnosis is so, so, so helpful for kids. I wish some parents didn't fear "labeling" their kids because when the label fits, it can unlock all the supports and services they need to truly start thriving. I hope this is the beginning of better things for Annelise.

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