Borderline high functioning autism

[Heather]

Catherine is borderline for high functioning autism. We are still working on whether or not to have her tested...or what to do really. Things have gone from bad to worse with her anxiety, behaviors, unflexibility, she is regressing to immature behaviors, having fits of uncontrollable crying...it has been really really hard. She is seeing a psychologist right now who we really like and who I think will be a great help...but we haven't found the right doctor for her yet. We are still working on that and on what to do as far as testing or waiting.

The hardest part is home. Most especially bedtime, but pretty much any time at home. She does great in school...loves the structure of it and the routine I think, and she is very smart. What are some things I can start doing at home to make life easier for her and for us? Things have been hard enough with Lindsey (and I know that is adding to all of this) but Catherine's issues are really the huge stress of my life right now. My husband is not helping because he just thinks it is all a big discipline issue...and honestly when he is here, it is much worse. But at the same time, I can't let her get away with her behaviors.

[TheirMom]

Can you put up a picture routine. So that she knows what is happening and in what order. On a velcro strip so that you can change it as life changes, but she knows A, then C, then d is happening tonight as opposed to A, B C like yesterday?

[Heather]

Ok, I like that. Keep the ideas coming...

[MOMB]

I, in our situation, am very glad that we got Sophia tested and diagnosed. She is more debilitated from her autism than what you are describing C. to be- BUT I will say- ABA therapy has been a godsend at identifying my DD's triggers for her various behaviors: anxiety, tics, stimming, etc. Sophia has been extreamly successful in the rigidity of ABA. She went from 1-2 random words, non-functional speech to 4-6 word FUNCTIONAL speech in about three months. I can now take her out in public and I can recognize her escalations and apply what our Behavioral specialist taught us to deescalate/help her cope more effectively in an uncomfortable of threatening situation. She is becoming more independent, more aware of her surroundings and gaining joy in them insterad of just chaos and fear. Her safety awareness has gone from 0 to being moderately aware of safety issues (like stopping at a crosswalk, not running away from me, staying beside my car when getting in/out, following directions like "stay in the grass". We have developed an evening routine that anticipates the rough spots and allows us to try to either circumvent them with a predicitable routine or to help us identify what is the trigger and implement effective interventions.
Sophia can now sit in her seat and independently work on activities, she can transition both at home and school without negative behaviors, she is no longer harming herself with fearful/anxiety producing situations.


I really think ABA has been beneficial for us.

[Heather]

I can't even identify what sets Catherine off anymore...because it is pretty much everything. I just got off the phone with the doctor actually, she knows we are having trouble, and tonight was particularly bad, and she is calling in some new meds for Catherine to start tomorrow, and she will see her Wednesday. Hopefully the meds will help her to sleep better and eat better, and that can be a start to helping her feel better...if she is rested and eating well. She also suggested doing pictures of what we will do each day to help Catherine feel more in control. She is very verbal, pretty shy, so stays close to me (not worried about her safety really), but her melt downs are horrendous and last for hours. She just finally has calmed down from one that started around 7pm. She's really hyper afterwards and coming downstairs a ton instead of trying to sleep. Then she wakes up tired in the mornings because she hasn't slept well...and we start all over again.

[mom2twins]

We are in a similar boat. DS was DX last summer and it really hasn't been any help in terms of services. ABA isn't available in our area, if it was, it might be worth it since I could try to get it through the school. The DX really didn't do anything for school, no additional services or anything. The only thing that helped in terms of DX was an ADHD DX (which technically you can't have both, but our developmental pediatrician thinks it's a disservice to not treat ADHD symptoms in a child with ASD -- and I tend to agree). I'm not sure if C has any of the signs of ADHD, but if so, it might be something to consider.

As far as technique or ideas to try, I don't have much to offer. DS does better at school than home and also does best with structure. I try really hard to structure his time at home, but with A being sick often and in and out of the hospital, it's hard. I did get him a responsibility magnet dry erase board thing for Christmas. Not sure if he will be able to pick up on it because the pictures are small, but I thought I'd try. If that doesn't work, I will print off bigger pictures. I'm also going to start a reward system with him, most likely a sticker chart (we've tried this in the past and it failed miserably, but it's been awhile, so I'm going to give it another go). We put a swing up in the living room and this has helped some since he can go on the swing and get some of his energy out and it seems to help him regulate his behavior a little. Also giving a lot of warnings before transitions helps sometimes when moving from one thing to the next.

It's really hard though. I'll be watching this thread since DS has really been struggling lately (e.g., hitting, screaming, regressing in behaviors, lining things up, spinning, etc.). In many ways DS is more of challenge than A. The combo of needs together is beyond difficult for me to juggle and balance out. Hugs to you!

ETA: Just saw your post above and it reminded me how very important a sleep schedule is for DS. Some nights, like tonight, he struggles with sleep (he too keeps getting out of bed, hyper, can't sit still, etc.). But usually that's because he had sugar that day (also diet is important for us. Sugar makes him NUTS along with food dyes, especially Red #40) ... something I'm trying very hard to cut out of his diet completely (at least in terms of refined sugars). When school is in session, he gets up early to catch the bus, and is goes to bed at a set time too. I have him in bed at 6:30 and asleep by 7:00. Then he wakes up at 6:45. When he doesn't get this sleep, it really shows in his behaviors. I hope the new medication really helps C!

[Jennifer]

We have used a schedule board at home and a few months back had to put one in the classroom (daycare). It has helped.

[brown1442]

I would seriously consider getting her diagnosed so that you can open up more funding and help... not only for her but for you too. I know we've talked before about her similarities to my older son and I will say with 110% certainty that he NEEDS structure and routine that I can't always provide. We finally decided to set up a modified ABA program for him too. So he has home health aides that come into the house and work with him on anxiety, emotional regulation, social skills, play skills, and some school work (like while he's a very advanced reader he still struggles with some concepts like inferences related to theory of mind, and he also is so literal that he struggles with idioms). Its been a Godsend. They play games with him and work through things like losing... and losing appropriately... and still have a ton of fun... and give him the structure he needs and me the time I need to get stuff done. The combination of meds and ABA have really helped... don't get me wrong... he's still a handful and a half but I finally feel like I have help to tackle problems as they come up rather than feeling hopeless drowning.

((((hugs)))))

[Heather]

Thanks Sarah...was hoping you would see this. She started risperidone on Christmas Eve and so far it seems to be helping. Evenings especially have been a lot better, and she is sleeping much better. We also have ativan for when she cannot calm down. Both the ped (this is Lindsey's complex care ped by the way, Catherine is seeing her as a specialist) and the psychologist are reluctant to test her at this point but are open to testing if she continues to struggle. The problem with getting a dx for this...our insurance does not cover ANYTHING on the autism spectrum. So they would no longer pay for her psychologist, which she really needs to be able to continue with her. We would get stuff through school, but I'm not sure that's a trade off I want right now? I just want to be very careful how we go about this. She is so borderline right now, that I don't want a dx that is incorrect... Lindsey's ped is being extremely helpful. I can call her anytime if we are having problems with Catherine (or Lindsey!) and insurance approved us to see her once a month for Catherine for medication checks and to keep up with her behaviors and emotions and how she is doing. She also sees the psychologist about 3-4 times a month. Sorry I am rambling... She goes back to school on Thursday. What would be a good way to schedule the rest of her day...like after she gets home from school until bedtime?

[MOMB]

Heather- I'm not sure if this is true in every state or in VA where you are, but when your kiddo has an autism diagnosis, they usually qualify for the medicaid waiver based on that diagnosis alone. You may get additional services through the waiver program that your primary insurance would not cover anyway- including BHS, testing and follow-up care.
It would definately be something for you to inquire about.

[Heather]

Well there is the waiver that Lindsey used to be on...I wonder if she would qualify for that. I will keep talking to her ped/psychologist and think about that too. I wonder if she could qualify based on the anxiety/OCD. I just feel so sad for her because she is the one who usually gets messed up schedule/routine-wise when stuff is going on with Lindsey...and she is one who can't adjust to change. Lindsey can take pretty much anything...sad how that works. :(

[brown1442]

Heather... I would definitely ask about the waiver. Our initial insurance didn't cover anything "autism" related either (ironically our current one does but now both boys are on waivers). Risperdal really helped Jason with his explosiveness... it made him much more even kiel. It made life around here more live-able honestly. The one thing it didn't help with was anxiety... which is why we are now adding in Celexa (we tried Zoloft in the past and failed it) we just started it this week so we'll see. The med game is such trial and error and it sucks. (((hugs)))

[mylilmonkies]

My 13 yr old was diagnosed with severe/profound autism when she was 2. For us we lived in AZ at that time and she was lucky enough to become involved in their intensive therapies. Some of the things we learned to do with and for her included created PEC's charts (picture charts) for chores, brushing teething, hygiene routines, getting ready for school, basically anything that was done in 3 or more steps. Creating the PEC's charts on large index and placing them in a small notebook and placing these charts on the wall really helped her learn to focus on the task.

Redirection when upset, we used a couple methods for this as she also has ODD. First, we would remove her from the situation. If just placing her in her room (with supervision using a baby gate) was not enough we would at first swaddle her and place her in her crib. For her swaddling her was very effective as the pressure over her entire body would calm and put her to sleep. This would not only calm her, but take her from an overly tired state, to a more refreshed and manageable state. With our daughter we had to have line of sight at all times as she also had the self-destructive behaviors. Not only did she have self-destructive behaviors but she had sensory and autonomic issues and did not feel pain normally. Without line of sight she would bang her head into the walls or floors, or pick her skin until she peel it off and leave it bloody. At the first the swaddling was a protective measure, then we found this was a calming measure, so we continued this as a first step in our calming step when the temper-tantrums began.

Maybe a weighted blanket or vest would suit your daughter very well. 10 years ago they were very hard to come by...

We also adjusted the family rules a bit to make sure all the kids were following the same rules. We used a tiered color system. On a green day the kids had all their privileges. On a yellow day a few of the privileges were removed. On a red day more privileges were removed, then on a blue day the only privileges remaining were reading, drawing, writing, and coloring. These four privileges have never been taken away or used as a punishment for our kids. Also if the kids were just having a really bad day if they took a nap they could move up a color. Every day always started on green regardless how then previous day ended (even though there were days I really wanted to start the next day on red...) I just felt the kids needed a fresh start to each day.

Then with the color chart we had a sticker chart. We placed a sticker on the sticker chart as they were going to bed for the color they were ending the day with. When we started the color chart we kept the number of green days low to get a special treat, bowling day, or other prize low then slowly increased the number every week until we worked up to a family vacation. When we traveled we took a smaller modified color chart with us.

Our ABA and Community Behavior Specialist therapists really helped us at first when it came to coming up with developing the tiered family rules, color chart behavior tracking system that mimicked what was being used in the school system at that point.

Now our daughter is functioning at a much higher level and is mainstreamed in a normal 6th grade classroom without an IEP. While we work with the IEP/Spec Ed closely with her and her unique needs. She still has OCD and Autism issues, is about 2 grades behind her aged peers, however, due to being smaller in body size she blends in very well in her class and most have no clue that she has autism, (yet the OCD shows through clearly).

[nko7]

Picture schedules are wonderful. Google picture exchange communication system and you can find out a lot about it. I am a special ed teacher and they are used a lot in the classroom and by students at home. Definitely get her help now. My oldest is 29 and is high functioning but when he was little there wasn't the help available that there is now. We are still helping my son with social issues. The high functioning children need help just as much as the others but too often fall between the cracks because they are high functioning.