High functioning mildly autistic GIRL/young age... advice
I have a daughter who is 3.5. She walked & spoke early (before 12 months) and her language is advanced. She was stringing together short sentences by 14 months. She is very "smart" and her pre-k has been wanting her to move up with the 4 year olds for a while (but it's been so hard potty training her!! ! And she is now on Miralax every day as she has bowel issues.) I've had some "issues" with her, it's just been so hard parenting her, I've bought Raising Your Spirited Child and 7 other parenting books, trying to figure out something, and nothing's really worked. She also has tons of sensory issues. Sensory behavioral issues, sensory avoidance, and sensory seeking (she is a huge sensory seeker, she wants to touch everything sometimes). She also has some "bizarre" behaviors we did not understand, but are now beginning to. She has a lot of anxiety & is very sensitive and cries a lotttt a lot. After highlighting some concerns, her ped sent me to a child psychologist for an eval. The first psychologist said there was autism "red flags," and sent me to another therapist in the practice, who also saw her as being "high functioning," possibly Asperger's, and mild on the spectrum. Her ped said perhaps PDD-NOS. They are now all being dissolved into ASD anyhow. She was evaluated by the center's team of OTs and it was determined she needs to be seen twice a week, so she's doing that right now. The second therapist sent us home with SRSs. They came back, mine as mild on the spectrum; her dad's, who works and so only sees her nights & weekends, as a typically developing child, but on the highest end of that. I've done so much research and apparently girls score lower -- as in lower being closer to a "typical child" -- on the SRS, as their social skills are better in ASD girls, and they do not present with the repetitive behaviors that boys often do. It really seems she may be HFA the more I learn. Funny enough -- we both rated her as having mild to moderate autistic mannerisms without knowing what that exactly was... We thought she didn't have any! But now we see the ones she does. She licks people, or touches them & walks away, she displays rigid & inflexible behaviors under stress, she gets stuck on one thought and cannot let it go until it's rectified, she FREAKS OUT when we change her routine, she sometimes wears clothing for the wrong season, she covers her ears & cries at some sounds like the radio or someone singing, she sometimes toe-walks, etc. One of the red flags they also said was how she screams & cries upon waking often, for an extended period of time-- sensory overload? She is a very picky eater. She has EPIC meltdowns with unknown causes usually. She doesn't like to be hugged or touched without others asking if it's okay, even me. She does not understand when she is getting in someone's personal space at all, or care. She does not "get" when she is hurting someone sometimes, or she doesn't get why people can't just get over it when she lashes out on them (like with physical aggression). She feels remorse about a lot of her behaviors and constantly apologizes for things, but sometimes when it's her that caused the hurt she seems like she doesn't care or doesn't understand what she did or can't bring herself to say sorry?? She is horrible with failure, like gets super frustrated and either gets down on herself or refuses to try again at times. She doesn't respond sometimes when we call her name, and seems "zoned out." She often doesn't respond when others greet her. Her eye contact is good, she has a sense of humor, she has a social smile, when she chooses to respond, her facial expressions vary & match what she is saying, and she can read others'. I read that girl autistics are better at certain social things like social awareness & social cognition.
The center she is going to wants her to have an ADOS done for a definitive Dx and they don't have a pediatric neurologist, and we are having trouble finding somewhere that takes our insurance so they referred us out to the early intervention/headstart sort of school ESE program... Trying to be her advocate and called them twice today and twice yesterday. Does anyone have experiences with A. Diagnosis of a HFA at a young age and B. A girl who is HFA? I need advice, help, support, anything. I don't want to drop the ball with her.
Autism Breakthrough by Raun K Kaufman is the best advice I can give you. Although his book came out recently, his method is very similar to what I have done with my son over the last 9 years. Without a doubt it works. My son is a very happy and confident child, we have very minor issues with him, probably more related to him being a teen than him being on the spectrum. Good luck! You are starting early and that is great! Our son wasn't officially diagnosed until he was 5 1/2...started at 5 with diagnosis and all include ADHD, OCD, ODD, SPD, PDD-NOS, AD/HD...our issues are TRULY minor with him. Please, if you have not already done so, get that one last book...you'll be happy you did.
My daughter was diagnosed around 22 months. She was moderately impaired at first ( and speech delayed), but now that she has caught up (and surpassed) speech-wise, I would say she is "high functioning" to the point that you wouldn't peg her as autistic until something happens and she can't compensate. Her main issues (she is almost 10) are with transitions and unfamiliar circumstances (she lacks the fluidity to adapt to a novel situation if she is in any way stressed, it just causes her to shutdown). She has some social deficits remaining, but compensates pretty well. Or at least she is able to identify people who will not be bothered by her remaining issues. She has friends, though few for her age.
Do you have specific questions you would like to ask? I can see if I can help.
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Mom to 2 exceptional atypical kids
Long BAP lineage
I guess I was just having trouble A.) dealing with her issues, as in not knowing how to help her, or how to properly discipline her? I'm not even sure when she needs to be disciplined, as most of the stuff she does she isn't doing on purpose it seems... navigating that is hard. I'm sure you all know how it is, at the beginning. and B.) getting a formal diagnosis. I talked to so many people lately trying to find out what to do for our daughter. I found out about an MCHAT autism screening via the tx center she goes too and called the hospital that does it about it, spoke with the nurse/coordinator of the mobile autism screenings at length and told her my daughter's situation. She told me to get a pediatric neurologist referral from my ped if she was on board, and that's what the tx center has been trying to do but has been unable to get a neuro. I've been on the phone all morning. We got a pediatric neuro appt!! They are booked out till the end of November--this is via a local children's hospital. The neurologist will rule out other medical possible issues, do MRIs, genetic/chromosomal testing. Then they would go on to a definitive autism screening if nothing else is found to be possibly mimicking the symptoms of autism. But it would rule out everything and we could be certain about it. Whew. So we wait. For that.
As for now, we have an appt with the school system's early intervention program, which she has already "tested out of" once. I was going to cancel that appt, as they have to have issues in three out of five domains, and she only has one, possibly two, so her issues are not big "enough" for them to offer her services. But I'll keep it for now and give them all of the new information I have. Along with bringing all of the information from her therapists, and her SRS scores, I found the MCHAT online and took it for her, and she scored as risk for autism. So I printed that for them too. I don't know that anything will come of it, but I'll go.
Just wondering if I'm doing everything right, and is there anything else I could be doing? And any other reading you guys recommend? To help me to cope in the meantime. I just don't know how to keep her from melting down, like seeing signs before, I honestly can't foresee them. And when she needs discipline, how to know when that is and what form to use that would work, as traditional discipline methods don't seem to be effective on her.
I will for sure check out that book.
Any other advice, will be accepted.
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