My five year old daughter is in the dx process and has been for a while because she keeps changing and growing through therapy. When she was three she was almost completely non-verbal. Now her language comp. scores test her around 4 years, but I think she tests well because there’s less stress than every day. Anyway, the improvement has made the dx process longer. She’s had all sorts of neuro and psychiatric tests and they all have her having features but they want to give her one more year before they put the label on her. You’d never realize unless you’ve been through it how hard the dx process is. So many times I hear it’s being over-diagnosed but I must have the most conservative psychiatrist and pediatricians in the world.
Also, my niece has a much more severe case.
When was the condition diagnosed?
Oh. I think I answered this already!
Briefly describe the person and their condition:
Our daughters sound a lot alike Schuyler! Bella has been tested far above her pre-k peers, especially in math. She does seem to have a talent for numbers. She’s very VERY social (to the point of being aggressive sometimes) and she’s happy for the most part. She will act out if a child rejects her (and they often do because she can be so aggressively friendly). She has a lot of sensory processing issues, so noises affect her whether it’s low hums or sharp loud noises it can set her off in a state of panic. That’s getting better though, or she’s developing skills to overcome the panic. Her self-stimulation seems to be spinning and repeating phrases, usually stuff she’s hear in movies. For a while she was stuck on some video game so when she’d get frustrated with speech or other work she’s holler “Press the red button!” over and over.
What have you done to improve the functioning/capabilities of this individual?
She has OT and Speech therapy once a week at a clinic and we do Vital Sounds listening therapy twice a day. I am so happy with that therapy and we’ve seen a HUGE improvement since she started in January. I’d recommend it to anyone with sensory and language issues. During the school year she gets Speech twice a week in addition to going to the clinic. She has an IEP set up to address her special needs.
Since she was born I haven’t worked. When she was a baby…oh man…she was a VERY difficult baby. Cried all the time. Never in two years did she develop a sleep pattern. I felt like I was losing my MIND. She didn’t sleep 8 full hours until she was almost four years old. She still only sleeps around eight hours and has a really hard time calming down to sleep. Pressure massage and back scratching helps. She has a weighted blanket, and in speech she uses a weighted stuffed animal on her lap to keep her settled. Her psychiatrist suspects she probably has ADHD as well. Or it could just be hyperactivity due to the sensory processing issues.
5. Any questions/concerns for your fellow Dopers?
I have been wondering about SS benefits myself. I probably wouldn’t get any help until she’s officially diagnosed? I probably need to look in to that stuff. I’m not big on taking money but we really could use it. I could provide so many more manipulatives and aids if we had some extra cash. I don’t know where to start though. I am hoping it isn’t one of those deals where you have to hire a lawyer and pay to get help. I should probably look into it but my own anxiety holds ME back.
From what I’ve seen, clinics where they do autism diagnosis will test for just about everything under the sun first. It should be a rule-out type diagnosis. My daughter has had all sorts of neuro tests in the past two years anyway.
At three or four, I think? Somewhere in mid-toddlerhood, anyway. K’s brother is also on the spectrum, and some of their cousins are more toward the classical autism side.
If you met them casually, you’d probably have no idea they were on the spectrum. If you got to know them a bit better, you might think they were shy, a bit eccentric and hard to emotionally ‘read’. I don’t really think of it as a condition; it’s just the way K’s brain works, and if it worked any different then they wouldn’t be K.
K’s also a huge geek, but in that we’re completely the same.
Occasionally I act as an “interpreter” between K and other people, explaining social nuances K misses. It’s a bit like explaining local culture to an immigrant, actually–I think that me being a multicultural kid (I moved from Belgium to America at 10, then to the UK at 20) helps me a little with understanding K.
There’s all sorts of therapies for those who have trouble dealing with symptoms, but a diagnosis also might be a relief if one has wondered for a long time whether or not they have it. If not, they can move on and see if it’s something else.
Yes, tell me abt it. I know of people who go " My kid has PDD-NOS" Ummm no they don’t. It’s just the nereological manifesations of the syndrome.
Rushgeek, I still would reccomend that ChinaGuy look into organziations like Easter Seals or UCP for an evalution…they can be awesome for conditions that are nereological but not exactly autism
I’ll keep that in mind as we go down the testing path. I’ve had both Denver Children’s Hospital and Seattle Children’s Hospital plus assorted pediatricians opine that CP is highly unlikely.
That said, CP coping therapy may also be applicable.
I’m girded for a pretty long process…wait times for the Seattle Children’s autism clinic are 4-6 months.:mad: We have other options though and now it’s wait for that first referral letter.
I don’t have any questions of my own, but to answer yours… My daughter’s still a child, but is doing so much better than she was just a couple of years ago. She has a best friend, who’s lovely (and is a BIG help at school), several interests, and is generally happy.
Weirdly, secondary school, which seemed like a nightmarish prospect with all the different rooms and teachers and the big kids and everything, is suiting her much better than primary school.
I’ve never had any doubts that she’ll be a happy, successful adult. Some things will be more difficult, but they’re not out of reach.
She’s very good with animals. I don’t think the autism plays a part there.
Actually, I do have a question: did you tell your daughter her diagnosis? I didn’t, because I didn’t want it to become a self-fulfilling prophecy. (Having a helper atschool didn’t stand out, at least not to her). Then one of the teachers told her. Some of her schoolmates have found out now too, and are always asking questions - one of them treats her like a total mental case.
I do wish she hadn’t found out yet; it hasn’t explained anything for her because it’s just another way of saying ‘yes, your brain works a little bit differently to the majority of people’s brains,’ which was patently obvious anyway; now it’s as if she has to be this way or that way and always will be.
Hopefully what I tell her and do with her will make her understand that that’s not so, but outside influences are very strong.
I decided to respond to the first post and then read the thread and respond to other posts to avoid having one enormously long post, so didn’t realise it was a zombie thread - sorry.
It’s okay. I’m sure I’m not the only one still looking in so maybe we can make up for the zombie-ism.
I haven’t even thought about when to tell my daughter! She doesn’t see it yet at her age, but other kids see it. They don’t hesitate wrinkling their noses up and asking what’s wrong with her right in front of her face so I imagine it won’t be long now I’ll have to explain things. She knows she gets to leave class for therapy so I guess that’s how I’ll jump in to a discussion.
Mark, Although it might not be CP, the organizations are still really good for services and stuff for kids who might not fit into other specific catagories.
You’ll have to clarify for me. They put it on the same list as OCD or ADHD, and it does have diagnostic criteria. What makes it different from any of these others?
Is it the NOS? That it’s one that’s “not otherwise specified”? Because, to me, saying a child has a pervasive developmental disorder makes perfect sense.
What distinction are you making between “neurological manifestations” and a mental disorder?
My daughter, age 24. with autism/mild mental retardation. (the mr may be because testing is especially hard for my daughter)
Diagnosed at age 3
She is very loving and happy, and always has been. She did do the echolalia, handflapping and odd vocalizations when she was younger, but has largely stopped that by now.
She has received various therapies/special education courses since she was diagnosed. The school system she was in was very good at handling her autism, in grade school she had a full time aide, and as her verbal skills progressed, they moved her into more mainstream classes in middle and high school. She is very high functioning, although I don’t think she will ever drive a car or be able to live on her own. Right now she lives in a group home, and I hope she will be moving into an assisted living apartment within a year or so.
