A Little Girl's Journey

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My daughter is 10 years old and in the 4th grade. Kind of. She can't read past about first grade level. Starting in kindergarten she's had major problems with behavior. She has major outbursts, climbs over and under furniture, crawls around the floor, hides, runs, spins on her bottom, yells, refuses to do any work, and sometimes refuses to come in from recess. She refuses to join groups. That behavior doesn't include the meltdowns.

She's been evaluated. The first private neuropsychologist in kindergarten spent about 30 minutes with her, wouldn't go any further and called it ADHD. Funny, she doesn't have much in the way of ADHD symptoms other than inattention anywhere else. Adderall did nothing except cause the worst meltdown ever. She actually hit the vice-principal who she loved.

Between kindergarten and first grade she was evaluated by the district diagnostician. KB wouldn't cooperate unless the diag played some tricks. She's at least average intelligence. The diagnostician said she showed evidence of higher order thinking but it didn't show in the WISC. Of course she didn't put that comment on the report.

In first grade her behavior was even worse. Her anxiety level was horrible. She was learning nothing except that she was bad. The school evaluated her for speech and OT. She had deficits in all. She had an IEP with OT, ST and help in reading. Glasses helped, but didn't solve the reading problem. Oh, and it gave her something to stim with. Otherwise she was in the regular classroom with a behavior plan. That didn't work. She had no friends, but plenty of bullies. I put her in an afternoon art class to expose her to other kids without academics. Within minutes she was running around the room flapping her hands and looking for a hiding place. She attended the class anyway because she liked it. It was about this time I began to suspect that she was on the spectrum. Ok, I pretty much knew.

She was evaluated by the district psychologist who diagnosed her with PDD-NOS. He's the first one who actually spent any time with her. He thought she should be classified under Autism for IEP purposes. The school hemmed and hawed.

Her anxiety went up while her self-esteem tanked. I pulled her out at winter break. Maybe I should have waited for the school to do its thing but really I didn't feel she had that long. So, I got her into play therapy. She had ceramics classes. She liked it, but tried to make her own rules. The other kids were kind of put off when she wanted to talk about eating leeches, which is something she got from Dirtiest Jobs. We went to park day with our local homeschoolers association. For the first time she actually played with other children once she watched for a while. These kids were on her level. Several were Aspie.
She started private speech and occupational therapy twice a week. She resisted any kind of formal academics, but loved learning in any other method. She could understand at least the gist of college level articles if I read to her.

We moved right at her second grade year. She made it through that year, but with great difficulty. There was very little progress in reading or math. In her third grade year she was finally evaluated for ASD. Sort of. The psychologist completely ignored previous IEP's, evaluations and observations. Instead she relied on the ADOS module 2. Since KB had some eye contact, was engaged, and didn't show any repetitive behaviors and had a great imagination they said she didn't have ASD.
I pulled her out again for the same reasons plus some others. She was learning absolutely nothing.

Now we're in a bigger city. She's in an ED class which is better than the mainstream, but still not ideal. Evaluation is coming up again. This city actually has programs for kids on the spectrum if I can get her out of the OHI classification.

So, after that long background, KB definitely has social, sensory, and speech delays. She has an advanced vocabulary but her conversational give and take is off. She veers into left field pretty quickly. She asks about things but not usually for social information. Her eye contact isn't completely lacking but it's sporadic. She has an excellent imagination but it's difficult for her to share imaginary play. Her play is definitely nonstandard. She has no real interest in dolls. Dolls aren't symbolic people. She ties random things together. It was cute when she put a bunch of her stuffed animals together to make a Transformer. She mixes various things together either experimentally or because she likes how they feel. She can practically recite "The Owls of G'Hoole" but can't remember sight words or how to form letters. For that matter, she can't remember that I told her she could go to a friends house. She forgets on the way to their house.

I don't know. She sure seems like she's on the spectrum to me and to a bunch of other folks, but she doesn't have any obvious "repetitive movements" and she doesn't have any obvious obsessions that she can't stop talking about. If her speech was more fluent more consistently she might talk about her interests more. Who knows?

That actually is pretty close to how I was as a child, except I don't think I ever managed to hit anyone........though I did have some pretty bad meltdowns were I would lose control and when I was having them I would not be aware of everything I was doing so I can see how that could happen.

But yeah my mom just kind of tried to push me to just be normal and get over it, my dad was a bit more understanding but there was not a whole lot he could do other then give me advice and stuff. So I went all through public school having no friends and mostly people who disliked me.......So I think the homeschooling thing is a good idea and getting her into groups with people she can relate to, because one thing that really does a lot of damage is not being able to build any confidence at all and being in a negative environment around negative people can have that effect.

I'm trying the school thing again, but this time in a smaller classroom. Hopefully we can get a better idea what's keeping her from reading. She refuses to read to the point of phobia. It's not that she doesn't want to learn because she does. She loves to watch nature shows. She loves to look things up on internet. She loves to be read to and comprehends what she "reads". If she gets a proper diagnosis of the reading difficulty and it's something like dyslexia or a visual difficulty she can get audio textbooks for the blind and dyslexic. She really wants friends and that's not going to happen unless she's around kids.

That's a very good point. I'm keeping an eye on that one.

In my opinion you need a full, comprehensive OUTSIDE eval done by a specialist (neuropsych, good dev pedi) who understands ASD. A full IQ, acadamic readiness, ADOS, the whole deal needs to be done. Only then will you undertsand the unevenness in your daughter's abilities. Only then, I would think, could they truly develop a plan to address her weaknesses by playing to her strengths. You can get this outside opinion by requesting an IEE from the district. Do some research on your options for clinicians. Do not rely on the school's "assessment". I would be willing to bet her behavior issues in school have to do with her cognitive differences which might be different from what you think (memory based? verbal processing difficulties? etc...).

I have that in the works. She has an appointment for a comprehensive evaluation with an outside agency that specializes in ASD and learning disorders in March. Next week she has an appointment with a pediatric ophthalmologist who can hopefully tell me if her eyes are tracking together. I suspect not. I have a call in to her pediatrician for either a neurologist or an audiologist or both since I suspect an auditory processing disorder. She's had an ADOS before with negative results. She can keep it together with friendly adults for half an hour. Besides, they used Module 2 which is for kids with a verbal age of around 5 yrs. When she was 7 she had a verbal age of 9. Wrong module. The ADOS isn't supposed to be used as the sole instrument, but it was. I know very well that her sensory and cognitive differences are causing troubles. It may not be a spectrum disorder at all. The knowledge of what works with spectrum kids has helped a lot at home, though.

I didn't start geysering at the mouth about my interests until I started high school. At your daughter's age, I didn't have the speech skills necessary to talk about my interests. I had little ability to put my thoughts into words. Maybe it is a similar situation for your daughter? But does she have any specific actitivites or interests that she does with single-minded focus for as long as you leave her alone to do them? I always had those, but I didn't talk about them until I learned to talk well enough to talk about them.

I've listened to her and an aspie boy playing. They create worlds in their minds. Sometimes she can share what's going on in her head. Lack of imagination my posterior. She's interested in science, nature, building stuff. Mostly I think her inner world is her major interest.

I think you are on the right track finding an outside clinician who can help diagnose your DD. One thing that you can try on your own first is to see if you can generate interest in letters, reading, writing with the Tales of Ga'Hoole series. My DD is 9 years old and loves that series and when I had difficulty doing some writing assignment work with her, I asked her teacher (who is remote, since we homeschool), if I could modify the curriculum a bit to get somewhere with the assignment. The teacher was all for it. We were supposed to write about "conflict" and while my DD typically shies away from even talking about conflict, she could find numerous examples in the series that she was comfortable (and proficient) in discussing and writing about. A struggle with an art assignment became a no-brainer when we used owls to discuss chiaroscuro and shading. Perhaps you can start off with asking her to spell the names of the main characters (challenging enough!) in sand and work toward having her read a sentence or so of the text? I know there are 15 books in the series, so the prospect of knowing more about the characters could be a strong pull to try to read.

My DD has ADHD as well as Asperger's and we pulled her out of mainstream school last year. A lot of the SPED team (who really tried to do by her) warned me about her not being exposed to children and social skills taking a dive, but honestly, since I've had her with me and teaching her, she has been so much better with meeting and talking to other children (something she really avoided in her mainstream school). Gen Ed was just too much for her and the expectations to transition from one subject to another within 35 minutes (not to mention the distractions) were so unrealistic. With a homeschool curriculum, we take as much time on a subject as she wants (spending a lot of time on science and art) and move quickly through subjects she's not that keen on (such as math, with a promise to end on a "high note" of an art activity). I realized that my DD's anxiety was preventing her from demonstrating her knowledge. She's very bright, but she needs the right environment to study and work.

In our city we have a homeschool group "school", with specific areas of interest and study that can be suited to kids on the spectrum. There are science classes just to study birds, nature hikes, legos, etc. Lots of dance, art, and math "club" activities as well. Maybe your daughter would function well in an art class like that where the art work is a little more "free form". My DD loves drawing but hated a drawing class because the teacher always made her draw what the class was doing. My DD just wanted the tools and instruction to help her draw what *she* wanted to draw But as she did it on her own ,she got more proficient. Sometimes the stress of doing things in a classroom situation blocks abilities and talents that are naturally there!

ETA: How long was your DD on Adderall? Our clinician told us it could take 6-8 weeks, working out perfecting dosage, before we would see progress (in our case we were working with Strattera). Many children need to switch medication immediately due to side effects, and it sounds like Adderall is just just not for your DD. My husband and I discussed our DD's Strattera usage --she was getting headaches and at times felt nauseous from the medication, even though we found the right dosage for her months before. Since the stress and anxiety of going to a mainstream classroom was out of the picture, we asked our DD how she would feel about medication. Did she want it or not? Unbeknownst to us, she had actually read one of those medication "alerts" within a magazine (the kind of 3-page small text that comes after a pharmacy ad) and asked to *not* to take Strattera. Within 3 days her headaches disappeared and we haven't seen any loss in focus or concentration with her work. Sometimes I think that we medicated our DD because we were thinking that the school had expectations about her behavior and they *must* know better than us, right ? Some kids just can't be molded to fit gen ed (or maybe they can, but the timing has to be right).

In any case, it sounds like you are doing a great job, finding out what your DD needs. She is very lucky to have you. Knowing that you have confidence in her abilities is going to go a long way with her!

Thanks. She loves the Ga'Hoole series. Wolves of Beyond too. And Warrior Cats. We have those in audio. She's practically memorized a lot of it. Comprehends it too. She definitely has a problem with reading and writing beyond anxiety. If I get that part figured out and if I can get her a good source of audiobooks I might go back to homeschooling. I can't see pushing text reading for years more with little gain if she's dyslexic. Sure she needs to read text well enough to deal with forms and signs, but books are fine on audio. I've known people that did great in college that way.

If you are in the US and before you spend thousands of dollars on evaluations (which is what they will charge as most insurance does not pay if a child is over 5) please contact your local Regional Center or call Easter Seals and they will put you in contact with someone who can help you with free evaluation. Both of my children were diagnosed through the Regional Center in California (we now live in France) my son, now 9, was diagnosed at age 6 with Aspergers. My daughter, now 6, was diagnosed first a few months before her 3rd birthday with severe classic autism. She was non verbal, would not respond to her name, little to no eye contact, would not point, would not look where you pointed would not wave or try to communicate at all. We got immediate help for my daughter and even though they said we would not we got help for my son. My 19 year old daughter and I were also diagnosed with Aspergers through my oldest son who was bi polar, Psychiatrist.

Anyway I can tell you that Aspergers tends to become more obvious after the age of 7 or 8. My son was diagnosed early due to my daughter having classic autism and my Aspergers, plus he had the little professors syndrome . He had no friends and spoke like a college student. However he has had serious LD's, dyslexia and dysgraphia where my autie is actually at the top of her class and is now speaking but has still a lot of issues with communication and many sensory issues still. My son was put into a specialized school this year while my daughter is in the public school with a full time aide. My son is fluent in French as we sent him to a French immersion school for pre school and kindergarten after which I quit my job due to my daughters diagnosis and my son being constantly bullied in a school that I was paying 10 thousand a year for. His new teacher said it took him sometime to get comfortable so she says she can tell that he was bullied a lot in his other schools (we sent him to the school my daughter is now at last year and he was typically crying when i would pick him up) He does not know how to be social, he tends to be bossy and gets upset if rules are broken and or no one wants to play HIS game. He is doing so much better this year and is even reading.
Your daughter sounds to have a lot of sensory processing disorder and from the way you describe her sounds more HFA than Aspergers due to the language delay. The "professionals", depending on where you are, do tend to overlook girls and refuse to diagnose them properly. I would definitely seek an out of the public school assessment. Also please if your insurance does not pay look into the above services if you live in the US.

I'm not sure I understand "Regional Center". Yes, I'm coming to think maybe she has a hodgepodge of sensory issues. I'm gonna figure it out. Luckily, she has medicaid which does cover all of the diagnostics.

The Regional Center is the unit above a school district- so, one regional center has several school districts.

I would not go so far as to say that insurance doesn't cover after age 5- it depends totally on the insurance! I've had several evals under several insurance companies and it's always all been covered.

I think I may have found it, but we'll see. I think I have most of the pieces covered.

I'd also add that one of the evaluations needs to be a full functional behavioral analysis. Something's going on with reading, and a behavioral psychologist can pinpoint reason(s) why your DD may be melting down and avoiding reading even when she's shown a love of learning.

I don't have warm fuzzy feelings about regional centers -- our DS was misdiagnosed by the regional center because he did not show repetitive behaviors and he appeared to have "good" eye contact and so they discharged him with speech delay. If you want to save the money and you live in an area where your regional center does a good job then regional center may be one option. We live in an area where our regional center is notorious for diagnosing spectrum kids with PDD-NOS or misdiagnosing them as not being on the spectrum at all in order to discharge them to the school district when they turn 3 or give them reduced level of services.

We spent thousands of dollars getting the most credible and reputable independent experts because our DS appeared social (never mind that he doesn't know how to play), verbal (never mind that majority of his utterances was echolalia and scripted), had "good" eye contact (never mind that these are intermittent if compared with NT children) and these were the most important dollars we've spent because the schools and regional centers play off each others' diagnoses. Once you get a wrong diagnosis you then have that on the record to "disprove." That was what happened in our case, and from my networking with other parents in similar situations -- to many other parents.

I know of parents who prefer the PDD-NOS diagnosis but if a child is on the spectrum, at least in the state of California the difference between PDD-NOS and autism is the level of services you can receive from the regional center and even from insurance companies. Many of these parents don't realize that as their children enter the adolescent years, even more behaviors and symptoms can emerge because now the hormones come into play, and these teens should still remain a client of the regional center so that the parents don't go bankrupt trying to provide the appropriate behavioral management treatments.

P.S. I just want to add -- I know at least 2 other families who have girls on the spectrum and they both had the same experience with the regional center that "served" us -- their girls were misdiagnosed. Both went to outside independent experts (independent of regional center OR school districts) to get the formal autism diagnosis. One of those girls is now a teenager and the parents are still needing regional center services as the girl enters adolescence and hormones have caused faster escalations to melt downs. So I'm not discounting the need for receiving regional center services, I simply have little confidence in their objectiveness of diagnosis.