Seeking opinions about our 10-yo daughter

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I would appreciate your opinions about my 10-yo daughter's behavior and traits. We never considered autism spectrum at all. Our oldest child has ADHD and general anxiety diagnoses, but our 10-yo has no firm diagnosis yet. We've not been able to afford quality healthcare and her present psychiatrist, although he got her an IEP for school, has thus far only concluded she has anxiety and selective mutism. He's never mentioned autism spectrum.

1. She was a "normal" happy baby who reached the milestones on time. Nothing concerning whatsoever, compared to our first child who was very serious and rarely laughed.
2. As a toddler she started showing intensity, which I would describe as both intensity of general expression (in positive ways too) and intensity of defiance in the face of discipline. This defiance made it almost impossible to discipline her, with extreme behaviors of throwing everything in site, urinating in high chair as a final act of defiance, etc.
3. She has long had a very quirky and genuinely funny sense of humor, with a keen insight into people. She is openly affectionate in general and has no issues with physical closeness.
4. She also showed sensory issues. She preferred not to wear clothes and it was nearly impossible to get out of the house on time just because dressing took so long. We've gone through five pairs of socks just to find the right ones. Food and smell and texture issues also present. Still a major issue today.
5. We did observe quite a bit of arranging of toys by shape and color when she was an early child, but this faded away and has not been noticeable for years.
6. By age seven or so we noticed her defiance becoming increasingly violent. It was clear sometimes she went out of her way to attack and even hurt her sibling, or say very mean things in a manner she would not have learned at home. This was the first time we heard her threaten to harm herself as a sort of form of blackmail, by saying she'd run in front of cars.
7. She would get overwhelmed, which we think is a combination of sensory and blood sugar (because often it seemed to happen when she'd not had enough protein). Once overwhelmed, it was game over. For example, collapsing to the floor at the school dance and just sitting there for 15 minutes, ignoring all approaches of friends or family. Or, absolutely refusing to smile for school photos (about 60% of them are her frowning). Or, hiding under a table at a birthday party. Her moodiness was such that a neighbor called CPS on us suspecting abuse and they specifically mentioned moodiness as one of the reasons.
8. Between ages 8 and 10 the fits of defiance were so strong and extreme that we'd have to physically hold her down to avoid serious damage to our rental property or harm to her sibling. I'd prefer not to go into details but the scenes were quite dramatic especially in public. And exhausting emotionally and physically.
9. She mostly loves to draw or play video games. She would do that all day if she could. She primarily draws characters from her favorite TV or video games. The drawings are very detailed and there are hundreds of them scattered everywhere. She likes some things that her female peers do not like and this has caused her social anxiety and struggles.
10. While her IEP in 4th grade helped a great deal, her behavior is still so extreme that without some further intervention, I do not see her fitting in at public school. For instance, she was mildly picked on in her classroom by friends, and she responded by jumping out the classroom window and running down the street, finally caught later by the principal. In another case she struggled with a test and went and locked herself in the bathroom for an hour, absolutely refusing to say a word to teachers or counselors why. She also will simply sit down and do nothing during PE, or sometimes refuse to stop reading and participate in class at all. She otherwise does like school and can be excited about it, and is fairly balanced academically.
11. Recently she has expressed being frightened by an impulse to cut herself. We suspect she may have learned about this from unmonitored YouTube viewing, but the local mental health staff recommended a 72-hour hold on her which we felt would end up hurting her more.

It's hard for me to read all that. It sounds extreme but it's our normal. I wish there were easy answers but maybe with a weightier diagnosis we can gain some inertia for greater intervention and avoid putting her through more suffering than is necessary.

What would you do in my situation?

Thanks for a detailed description.

Please read this article: http://www.eikonabridge.com/fun_and_facts.pdf. Your daughter has several typical characteristics of an autistic child. So, I am going to assume here, for the purpose of discussion, that she is on the spectrum, regardless of what her clinical psychologist may say otherwise.

Ten years are a long time. Take away the first two years, it means she has been approached the wrong way for 8 years. It worries me that you have used terms like "discipline" and "defiance." The resentments piled up in these 8 years cannot be erased easily, nor permanently. Damage has been done. Now we can only hope for a "next-to-best."

First thing to remember is: the "punishment-and-reward" approach spells disaster for autistic children. Autistic children don't respond well to that approach (which by the way is geared toward neurotypical children). Autistic children view themselves as equal to everyone else in the world. The usage of power and authority is about the worst possible thing to do. I also suggest you read the letter I wrote to my son on his 8th birthday, so you can understand how I treat my children as equal-right human beings, from the days they were born.

http://www.eikonabridge.com/Ivan_8th_birthday.pdf

Here is a paragraph from that letter: "Mom and Dad are truly blessed to have you in our family. It’s a privilege to be your parents. And we thank you for the opportunity to be part of your life." That is our attitude. Any parent in the world can adopt that same attitude, here and now.

From now on, treat your daughter as an equal. Try to think that you are not above her, but you are a peer to her. Furthermore, you can print out my "Fun and Facts" article and take it to IEP in school, and tell all the teachers to stop doing "punishment and reward" toward your daughter. It has to stop right away. There is another way to handle your daughter's outbursts. No need for lectures. Instead of lecturing, you only need to state facts. Facts are neutral, and acceptable to everyone. You only need to ask her whether life is tough, or life is fun.

You say your daughter likes to draw picture. My questions to you is: have you done drawings for her, ever? See, communication is always a two-way street. When my children were younger, I communicated to them through picture drawings and through making animation video clips for them. Sure, now they are older, and I don't need to do that as much anymore. But what I want to point out is: if I have a great relationship with my children today, it's because I communicated with them through their language: the visual-manual language. Your daughter is now too old for you to draw pictures for her. But you could show you want to participate in her interests. For instance, you could start to collaborate with her, by collecting her drawings, scan them into computer, do some touch-up and image editing, then, find some on-line comic book publisher, and print out your daughter's creation professionally, so that she could share with her friends. (Or at very least you could take them to FedEx/Kinko and bind the sheets.) If she wants to write some stories next to her drawings, so much the better. If she has interests in music, that'll be great, too. I personally record some of my daughter's music creations. You can use a sound editor to remove the pauses and mistakes. Anyway, the idea is to preserve whatever your daughter may create, and boost her confidence that she is a creative person. Follow your daughter's interests. If she likes Japanese animation, then why not try to get her to learn Japanese? Things like that. All these are just some ideas.

Find/Create opportunities for you and your daughter to have one-on-one fun time. Use some of these fun times simply to have fun, but use some other fun times to bring up and talk about her mad/sad moments as well. Remember: stick to facts. Your job is simply to connect her good moments to her bad moments, and vice-versa. She herself will figure out what to do. That's how you develop her brain and her maturity.

I am not qualified to give a diagnosis. There are several different types of Asperger's Syndrome - Aspies (now referred to as High Functioning on the Autistic Spectrum). Since you said, "She otherwise does like school and can be excited about it, and is fairly balanced academically", I would suspect she is not a low functioning Autistic.

I am a pattern thinker. There is another type called a visual thinker. Since your daughter likes to make very detailed drawings, she may be that type of Aspie. So my first suggestion is to track down several books by Temple Grandin, who is a visual thinker, and see if your daughter's traits seem to match that of Temple.

My second suggestion is let your daughter excel in the areas she excels in. In some areas I was a slow learner in school. I didn't like to read until I entered high school, then I progress like a rocket blasting off. Once I found the desire, catching up was not a problem.

There may be ways to accommodate some of your daughters sensitivities; if you can determine what these are. Some Aspies are sensitive to different frequencies or intensities of light. As a result, some wear sunglasses indoors or special sunglasses with Irlen lenses that specifically block certain frequencies of light. Also the type of lighting can affect Aspies. I am sensitive to fluorescent lighting. Some Aspies can become overwhelmed by certain sounds. Therefore if she has a problem with these, she might try noise canceling headphones. Her problems in P.E. may be due to the fluorescent lightning or several other Aspie traits. High-Functioning Autistic Students and Problems in Physical Education Classes These sensitivities may be a major cause in the meltdowns.

If she is a picky eater, you may want to supplement her diet with vitamins because she may not be getting proper nutrition. I would also recommend that she takes probiotics every time she completes a treatment of antibiotics. This is to restore her colonies of good gut bacteria after treatment. [Within an organism, let us say the human, specifically focusing on the human gut. There is a homeostasis, a relatively stable equilibrium between independent elements, the microbiota that includes the bacteria, archaea, protist, fungi and viruses. This microbiota is crucial for immunological stability. It is the synergy of these various elements that keep the organism viable and healthy. Depriving the body from absorbing part of this microbiota can produce within the gut an unhealthy state that can lead to gastrointestinal problems.] Also minimize her sugar intake. Improper diet can produce long term problems in Aspies.

I am bumping up this post wondering if anyone else had any more insights? I apologize for not replying to the original respondents. I was feeling hopeless and somewhat misunderstood.

Our DD's plight continues in 6th grade. Teachers have tried to be very accommodating but she often simply refuses to do work they ask her to do. This defiance strains the teacher's ability to maintain order and attend to the other students. At one point during the parent conference the teachers were basically asking if we could not get a more definitive diagnosis.

On the plus side, her drawing abilities have gotten so sophisticated in the past two years that somebody with an advanced art degree told us to send her to art school ASAP.

Some adults with bi-polar disorder told me this behavior was very similar to theirs prior to their diagnosis in their later teens, although that's anecdotal.

We hope to have her evaluated by more professionals in a larger city in our state.

I read your original post and had many of the same thoughts as Jason (eikonabridge) before reading his reply.

If your daughter is autistic, she may be desperately needing a visual connection to the world and those around her. If she is a visual learner, her development may have been limited and frustrating because of how those around her have tried to help (likely primarily through verbal communication). That frustration would certainly lead to the behaviors that you are seeing. Art may be her one visual outlet and connection to the world.

She sounds like a young lady of many abilities and is probably quite intelligent whether or not teachers recognize it. Because you and her educators see her frustration displayed defiant behavior without recognizing the root cause, you have likely become more structured and strict with her. She might simply be rebelling against that as she is not respected for her intelligence.

A lot of what you describe - sensory issues, shutdowns, refusing to work, video games and drawing - would fit my now 8yo daughter, too. Probably a difference is, I do share her issues.

Sometimes, when she refuses to speak, I draw to her. I'm non-visual and poor at drawing but it's not important, apparently the visual channel of communication makes all the difference to her.
During fits, going to some quiet place and a soothing hug helps. You correctly noticed it's about being overwhelmed so whatever eases the overwhelm, helps.
Attempts to discipline her fail, just like they used to fail on me. Being honest and fair works better. Aspies are often rules-oriented, so try to establish some very clear and realistic rules to stick to. We really suck at getting "the obvious", so make sure everything gets thoroughly explained, with pictures if possible. Focus on the most important parts like safety, leaving space for eccentrities - I, personally, need to act eccentric to stay sane. Maybe your daughter needs it, too.
Try to make your environment as predictable as possible. Sudden changes of plans are horribly stressful.

An official diagnosis may help at school. Here, it entitled us to get help from a support teacher.

How about encouraging your daughter to join some autistic support group? I think adolescent Aspies can really benefit from contact with adult Aspies.

My six year old has a lot of these behaviors. He has done an 85% turn around since we finally allowed the drs to try him on Adderall. Sometimes a kid NEEDS a medication, and that was the case for us. So be open to what the doctors suggest. Something you don’t believe in (as with us with Adderall) might be the solution to your problems.

However, children can be diagnosed with pretty much anything before they are old enough to participate in the diagnosis procedure. Many conditions share symptoms or behaviors, so it is difficult for any person to say with certainly what is causing anything with a child. Even if she has a diagnosis, stay loose with it in your mind.

Also, don’t assume that she understands her own, or other people’s emotions. Emotions are a hard thing for anyone to understand, and that can be greatly complicated by sensory or other issues. If a kid is smart, strong, or has some other natural talent/strength, it can be like a Baby Superman situation. The kid can wield powers they don’t understand and can’t control. You’d have to help her slowly gain control over her strengths.

I really like the picture drawing suggestion.

And seriously don’t let her YouTube. I know it’s hard to stop them, but there is so much bad stuff targeting kids. Get some software or procedures so you can keep her on tether without her being too aware.

It’ll get better!

I'm afraid I agree with your psychiatrist that beyond selective mutism and anxiety there is only limited evidence for a Autism diagnosis. I would be cautious before going down this road.

Have you also considered early childhood onset of oppositional defiance disorder or ODD?

Don’t they have child-oriented filters within YouTube?

There’s lots of excellent stuff on YouTube, in addition to the crap.

The "defiant" behaviors don't sound like the typical female presentation of high functioning autism to me - usually females do more mimicking and masking to fit in, with severe anxiety issues as a result. But jumping out windows...hmm.

That said, we aren't mental health professionals AND you can't properly diagnose anyone from a secondhand account on the internet, so I would really recommend finding an autism specialist AND just a general psychiatrist and get some medical opinions ASAP. If you can't afford insurance, she may qualify for Medicaid if you are in the U.S. (assuming so, since the UK and Canada would have you covered, and you seem like a native English speaker). Do research before you go so you can ask smart questions to help them get to the right diagnosis.

The OP said she has a child psychiatrist who diagnosed anxiety and selective mutism.

True, but they didn't seem to find those diagnoses/whatever treatment plan was suggested helpful...I suppose a second and third opinion would have been more the more accurate way to state the advice.