-
How to get the tester to diagnose your daughter with autism
It’s very difficult to get someone to say what you want them to say in a letter to the school. People who test for autism are especially incompetent at testing girls. This is a template you can use to argue with someone who did not diagnose your daughter with autism. I wrote this for someone who definitely should be diagnosed but the person testing has no experience diagnosing girls.
I wrote the letter so the parent can give the letter to the tester.
Hello ___. I read the report from Dr _____. It looks to me that autistic girls is not her specialty. There are a few areas of the testing process that she seems to not have complete awareness of. Perhaps telling her about some of these areas could encourage her to adjust her assessment of B.
Diagnostic criteria:
B’s low visual spatial score, by itself, is an indicator of autism. (Carrillo 2020)
Assessor’s own biases:
When parents report that a child has decent social skills but a big problem with repetitive behavior, if it’s a boy the child will get a diagnosis, and if it’s a girl, the child will not get a diagnosis. (Duvekot 2016) This might be the case in Dr____’s assessment because Bs fingers are bleeding.
B has a history of toileting problems and she scored poorly in the area of self-care. Research suggests that “health professionals would benefit from better understanding factors such as toileting problems….that could potentially guide early identification of ASD in clinical practice for school-age girls. (Petrou 2018)
B currently has a “low number of foods that she tolerates and tends to resist new tastes.” Food selectivity is a trait that appears in 80% of kids with autism and poses very serious health risks. (Leader 2020) Research shows boys, but not girls, who had both ASD and eating problems, were diagnosed earlier than those without eating problems. And clinicians only gave girls the diagnosis when girls also presented with behavior problems. (Estrin 2020) In this case, again, it seems. Dr____ might have held the bar for diagnosis higher for girls than boys.
Limitations of the ADOS-2
Dr.___ writes that there is no diagnosis of autism because, “Social skills were rated to be within normal limits. Atypicality symptoms were not endorsed.” However there is no discussion of adjustments she musti make due to the ADOS-2 being an unreliable test for girls for autism because the observer is often unable to see past the girl’s ability to camouflage (Rynkiewicz 2016) (Allely 2019).
Dr. Jackson writes that “Ratings were not elevated to support a diagnosis of autism. There were mild elevations in terms of ability to… sustain reciprocal social conversations.” However research shows that autistic boys and girls “had similar theory of mind skills despite girls having increased reciprocity (compensatory camouflaging).” This is the camouflaging that makes it difficult for observers to catch autism in girls. (Wood-Downie 2020)
Importance of parent reporting in key areas
While there was a difference between what the parents reported and what Dr ___ observed, research provides some guidance as to when parent’s estimates have the most weight: parents’ reports of repetitive behavior in boys were predictive of an autism diagnosis (95% confidence interval) but not in girls. In contrast, higher levels of parents-reported behavioral or emotional issues in girls predicted an autism diagnosis (95% confidence interval) but not in boys. (Duvekot 2016) Ari’s mother expressed “a severe concern” in behavioral and emotional issues.
Weight of medical history in diagnosis for girls
B has GI problems and sleep problems which are comorbid in autism 80% of the time. (Al-Beltegi 2021) B had a speech delay at age two which is an indicator of a future autism diagnosis (Riva 2021)
Regression analysis shows that fine motor delays in children with autism start as young as infancy and gets wider as the child gets older. (Herbert 2022) This is the case with Bs history. The very early speech delay is a result of an early motor delay, as speech comes first from motor development (Talbot 2013). B was then delayed in self-care and then handwriting. This history of motor delay is especially important in girls who are at high risk for autism. Motor delays are particularly common for girls with autism and girls are less able to camouflage these delays. So in the case of girls, the amount of delay is not as significant as the fact that it is there. (Gabis 2020)
I’d be happy to talk with Dr_____ if that would be helpful. Although I’ve included links to research here which will probably be enough for her to make adjustments to her report.
Good luck with getting help for B.
Penelope
-
18 Replies
-
This is fantastic! I think the other thing is if you are trying to get the school to diagnose – it’s not going to happen if you don’t get the diagnosis from a professional first. Yes it’s expensive. And it’s also totally worth it. And if your work offers AFLAC – you can get $3000 if a child receives an autism diagnosis. So maybe sign up for that before you pay for the diagnosis. It might help with the costs. That or see if you can get a regional center to diagnose first.
The key there is if they ask something – they don’t mean “can your kid do it ever?” – they mean “can your kid do it independantly, without supports or modifications 80% of the time or more?” And the answer is yes or no, do not elaborate. Yes you love your kid and want to see and present them in the best light, but not to the point of harming them by keeping them from getting the support they need.
-
That’s a great way to think about the questions. Because you have so much power in the diagnosis process if you just answer the questions the right way in the parent interview.
-
-
I thought I would out myself here: Penelope wrote this letter about my kindergartener. It helped me not feel gaslighted about my concerns with her evaluation. Thank you again, Penelope.
I have been thinking about her lack of diagnosis at this time. Every evaluation (speech, OT) that I have seen from the school indicates that she is performing at grade level and is not in need of support services. Her teacher describes my daughter as an “angel.” (I guess she has quickly caught onto camouflaging.)
But when the angel gets home, she has sensory-seeking behaviors, meltdowns. To me that’s indicative of stress. I recognize that I have poor judgment; I don’t know what’s normal.
So I guess I’m interested in what potential crisis points/ages/vulnerabilities are for an autistic girl in elementary school. I feel like I don’t have the evidence now to support reassessing her. And I don’t know what kinds of supports her school can provide even when I could show them a diagnosis.
-
First, I want to commend you on your bravery! Being vulnerable is hard.
It sounds like if your kindergartener is coping with so much stress, this is not the right fit. She’s masking so much that she’s not acquiring the critical social skills she needs.
Right now with my kiddo we’re working on teaching him to verbalize when things are hard and he needs help, instead of trying to cope until he can’t and melts down.
-
Thank you for writing, Jenny.
It’s interesting. She calls her classmates her friends. These friends greet her when we walk around our neighborhood. She says her favorite part of the day is recess. I have volunteered in her class and do see her engaging with other kids. Sometimes it’s just that slightly “one beat behind” cadence that was discussed in a previous autism group week.
So it’s hard to parse. Is this what developing coping/social skills on her timeline looks like?
I guess I’m asking the group what should a school day for an autistic girl look like?
Thanks for sharing what you have been working on with your kiddo. I was wondering how old are they?
-
I deleted the other post for you.
My kiddo is 7. It sounds like the free play and/or being outdoors (recess) is what your kiddo likes best? Kindergartens in the U.S. tend to be way too heavily academic these days (see Penelope’s stuff on homeschooling). I went to a thing for our local one and it was terrible – talking about reading skills for Kinder instead of social and self-regulation and play skills.
I’m trying to get us into an amazing co-op former Waldorf school on 90 acres if they’ll accommodate us (technically 2nd grade, but really needs those Kinder skills – thanks pandemic!).
In your place I think I’d be exploring what the struggle is. Is it ADHD making it hard to focus/sit still/be quiet in class? Is it anxiety about whatever is being done in class? Is it boredom because she’s already learned everything they are “teaching” and she’s having to cope with that? Is it too much physical energy pent up inside?
-
Thank you for that.
These are such great questions, thank you. I hope things work out with the co-op! I held out every hope for something nature-based for her. We explored the option of a Waldorf co-op that was entirely outdoors. But all her life she has resisted a lot of nature/outdoor time, which I attribute to issues with sensory processing. Like hating the beach because of the sand. (We live in Florida… it has gotten better, but, yeah, she would rather be inside reading a book.)
There are two public Waldorf charters in my county–one is 30 minutes away and one is 45 minutes away. I enjoyed visiting, but from what I have heard they don’t have such a good reputation for kids with IEPs. The neighboring county’s public schools have a great reputation for NT kids but not for kids needing accommodations.
So I guess I’m going to keep sitting with your questions. The school was planning on identifying services for her based on the anxiety diagnosis. She does find a lot of the academic day boring, which is maybe why recess is interesting. I guess that’s why I’m still trying to visualize what a responsive day looks like for her so I can help advocate for what she needs. She says she loves her school and wants to go there forever. I don’t want to project my anxiety onto her if she genuinely feels that way about her experience. But she is so tied to routine, so I imagine the idea of a change from what she knows now as her daily life would be scary-sounding. I’m just trying to tease out the truth of what is really going on and it’s just so hard.
-
That reminds me of Penelope’s talk, the horrible known is better than the best unknown. We have a policy (we avoid rules, helps with demand avoidance/opposition) that we try new things for 5 minutes, and then if it’s scary/boring/etc. we can stop/leave. Then we can remind the kiddo that we’ll be there and that coping for 5 minutes is something doable.
-
Love this, thank you so much for the idea.
-
-
-
-
-
-
I have the same trouble – trying to figure out what should a good day look like and what a bad look like for my daughter. We aren’t at the elementary school age yet but at a montessori. While the teachers and really supportive to talk with her and help w peer to peer conflict. It’s that “a second too slow” thing that she can’t keep up and it’s bothering her. I’ve gotten her to at least voice that problem to me when she’s having meltdowns after school.
So i can see other kids are engaging her but she’s never quite sure how to engage back to keep it going. That must be the ‘sustaining friendship” problem I have too.
I asked an autism doctor about what to do and he said really, all you can do is keep trying to schedule playdates and expose her more to these situations so she finds a rhythm on her own. Especially at this age, forget about anything academic demand.
-
We’re working on modeling being ok with being awkward and having do overs. Like now we raise our hand when we have a question or comment rather than trying to find a pause to jump in.
Coping with discomfort is an important skill.
-
That is so true.
-
-
Wow, this really resonates. Thanks for sharing your experience. The never quite sure how to engage back… yes, we struggle with that. I ask her about any classmates she would like to have a play date with and she quickly says no. Do you have any advice about how much to push the exposure to those situations?
-
Can you explore the whys with her? Why doesn’t she want a playdate?
My guess is anxiety hopefully, or they aren’t actually her friends. The kids who bullied me were the same kids I hung out with. There were 2 cliques of girls and I’d bounce back and forth between spending recess with – depending on who had hurt me most recently (if I wasn’t hanging out with the guys).
-
I think it is anxiety and that the idea is overwhelming. We were very isolated during 2020-21 due to pandemic and my health issues, and she doesn’t have a kid-playing-1:1 frame of reference due to avoidance. I have to be careful how I bring up any questions about difficult or emotional subjects because she keeps big feelings close to the chest. Reflecting on this thread as a whole, I see my drive toward trying to predict outcomes and what kind of pressure that must feel like to her. Trying to find and navigate a healthy way out of the enmeshment.
-
Yeah, figuring out how to step back from enmeshment but without dropping the floor out from under them is challenging.
I liked one of books from this author:
and this app:
Breakthrough research on well-being and parenting (humanimprovement.org)
-
-
-
-
-
-
I want to comment on finding the school day boring. For autistic girls the school day is not boring. We are scanning all the time trying to figure things out socially. It’s our only window into how the other girls operate.
Boring is a word autistic people use as a standing for I don’t like this. We have such a poor command over expressing our feelings that we use a limited vocabulary to express a range of things we don’t like.
So your daughter is saying she’s bored when she can’t focus on the material the teacher is going through because there doesn’t seem to be a linear point e.g. “can you think of a time when you would need to know the area of a square?” This is the type of classroom discussion/game we hate because it’s so open ended. We a would say “that’s boring” but the point is discussion. And that’s super difficult for us.
Often, though, parents hear, “that’s boring” and they think their kid knows the formula for area so this class is too slow. But actually the kids social skills are too slow.
She likes recess because no one tells her what to do. Being told what to do is boring. Remember the scissors test? Not even grown ups with autism can quell the boredom of unwanted instructions.
So if your daughter is bored she’s having attention problems. She needs breaks but also she needs a special Ed teacher in the classroom with her to help her benefit from the lesson. That’s what “appropriate” means in the legal, IEP sense of the word. It’s not an appropriate education if the teachers lessons feel boring because your daughter is too overwhelmed to understand the point of the lesson.
-
I have to be careful about projecting what my assumptions are upon my daughter.
I realized this when I could not remember when it was that she called her school day boring.
I was using the language of the question without going deeper.
What I do know is that yes, her energy is spent constantly scanning the social landscape of school.
Sometimes she reveals a glimmer of her observations. She sits at a table with two other girls. These two girls are constantly engaging with one another, besties. “O and M are always racing to see who’s going to be first or second. They get me to do that with them.”
“Oh yeah?”
(pause) “I’m usually third.”
-