Daughter in Crisis-Don't know where to turn for help

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Some kids get abdominal migraines, and their pain looks exaggerated, so it's assumed to have psychological origin. And as someone already said, she sounds alexothymic so probably not only has trouble identifying and coping with feelings, but also likely doesn't display feelings in a typical way that's easy For other people to understand.

I think probiotics but really did not write to repeat what was said so much as to say I hope the new therapist works out, if you don't get a good feeling about her understanding and trying to understand and be supportive "let's do more of the same" would make me run. And will only turn your daughter off therapy....I would encourage you....trust your instincts, keep looking until you find someone you think likes and understands your daughter and who you think your daughter likes. And letting her know you believe in her and will stay behind her and even if you don't understand, you will try. Because she doesn't understand either and it's no doubt frightening for her.

Mama_to_Grace, I'm so sorry you and your daughter are going through this. It's been awhile since I've been on this board as well, but we went through a similar situation with my daughter (now a seventh grader) when she was in third grade. She didn't exhibit anxiety and what we used to call "yelling moments" all the time in school, but she was slowly "checking out" of school activities - reading when the teacher was teaching, needing an incredible amount of prompting from para-educators to complete work, not lining up with her class, and generally functioning about 2 steps behind everyone else.

It got to the point where *I*, as a parent volunteer, was acting as her para. I would help other students too, but I noticed that she operated as if she were in a fog. At home she was engaged, but at school, it was as if she had blinders on (she did have noise-reducing headphones on for part of the school year, because we thought her sensory issues were causing her to "check out"). If she didn't do work at school, I made her bring it home to do, and it was fascinating because she did it extremely fast - she was listening in class! We repeated this pattern throughout half the school year (not paying attention in class, bringing work home, having her finish it in 5 minutes). Mid-year we transferred her to a self-contained classroom and it was a disaster! Too many students with attention issues lumped in with kids like my daughter (HF-ASD/Asperger's). She felt threatened by a boy next to her who had violent mood swings and the para-educators at the new school were terrible! I finally woke up when my son (her younger brother, who was 6 at the time), asked me one day when we were on the way to pick her up, "Do you think (DD) is going to be crying today or yelling today?" I was heartbroken.

So that summer I looked at private school options. The one hope we had turned us down flat, saying that their school (mainly consisting of boisterous boys on the spectrum) could not accommodate her personality "type". Defeated, I did what kailuamom suggested and homeschooled her through an online public school charter program.

The difference was amazing. She broke out of her shell, became engaged more with both schoolwork and home life. We just did walks in a nearby forest as "P.E.". We would finish schoolwork early and have a full hour of walking in the woods. Schoolwork came together for her better. When I asked her if she wanted to go back after my year teaching her (4th), she said not yet, so we did 5th grade together with the same program.

I firmly believe that the child has to be relaxed and ready to accept instruction in a public school setting. With so many challenges (social and academic) they face every day, it has to be something the child wants 120%...because as the day wears on, it's going to chip away, little by little, at the confidence. It sounds like your daughter needs to re-build her tolerance for facing the onslaught of kids, teachers, noises, multiple instructions. Build her confidence first by having her feel safe first and I think, with time, she may be ready to try again. The physical manifestations of her anxiety are very real - to her! It doesn't matter if a doctor says, Oh she should be just fine. Remember, most Aspies feel things that us NTs are not capable of feeling. Take her at her word and try to help her relieve some of that anxiety by asking her what would help her feel in control.

When she is ready to go back (and keep asking - she'll be honest and tell you!), I would start a plan of reintroducing the idea of school organization and school skills a few months before her brick and mortar school experience actually starts. Is there a place that offers homeschooling classes in your city? Or maybe even an academic after school program? Help her learn how to organize her binder, take notes, practice classroom skills (raising her hand, taking turns, feeling comfortable being in a small group setting). Some executive function skills books are helpful (we started with "Smart but Scattered" by Peg Dawson, but there are many others now). Help her build confidence in facing anxiety by being prepared. A good cognitive behavior therapist would be helpful for the transition too.

If it's possible, meet with an IEP team at her current (or new) school at the time, but ahead of the academic school year. It would be helpful if, in her schedule, one period of her day is planned with a learning center teacher who helps her go over her day and plan for the next one (usually in middle school, there are 2 elective periods - make one with a SpEd teacher). Gen ed teachers should be aware of her potential anxiety and know what to look for *before* your daughter goes into crisis mode. Make sure she has a safe place at school, but that she isn't forced to go there...more like a retreat and when she gets her bearings, she goes back to class. I think the key is that you don't want her holed up in a classroom by herself; you want her to have some coping strategies, use those tools, and then regroup. I think that's what most of us who have anxiety have learned to do. We still have our anxious moments, but we have learned to manage them and come back to "the regular world" when things settle down.

I have lots of hope for you and her. She's sounds like a brilliant and sensitive kid who will do so well with some support. My daughter is now at an arts magnet school (her second year in this school) with a communication behavior team behind her. She is in gen ed 6/7 classes and she is a budding artist. She is so happy at her school (second year of straight A's ), but it took us awhile to get there. She really needed to be home to find her way for awhile and we were fortunate that, as a family, we could work with one income (my husband's). If she had needed to stay home longer, I would have taught her through high school, if necessary!

Good luck to you and sorry for writing a novel LOL! Best wishes to you and your girl...

Sorry, one more thing about your daughter's therapists...a kid of her awareness and "preciseness" of words is getting hung up on the words the therapist is using. Of course one can't "breathe through (your) stomach"! She's not "frightened", but probably feels "uncomfortable, anxious...". Have her use descriptors with the therapist instead of having the therapist try to speak for her. Analogies are great for this ("I feel like a....cat who is trapped....", for example).

This is where a very good cognitive behavior therapist would be so helpful, particularly one who deals with girls/women - generally girls are much more able to articulate things, but in a very, very precise manner.

An update:

While my daughter is doing a bit better and not having panic attacks as often, the OCD type behaviors are continuing to worsen. She had really bad anxiety/meltdown when were supposed to go back to the behavior psychologist and do Bio Feedback and shut down completely and wouldn't even look at the Dr. So the Dr proceeded to spend the hour lecturing me on how I shouldn't let her watch videos all day, or lay in bed all day, and how she should be doing school work, etc, etc etc. She was also upset I decided to step down and off the imipramine. So I cancelled all future appts we had booked with her-I don't think she gets it (even though she supposedly "specializes" in "autistic disorder" which is what they are calling it now).
I also cancelled appts with GI doc because I don't think he was helping at all. "It's all in her mind" doesn't help me or her.

However, we found a very good, young psychologist near our home (literally 2 blocks away) who has been very helpful. However she is very concerned Grace's anxiety is causing her to exert control in the one place she feels she can at this point: food. Grace has stopped eating very much and only eats what I consider not very healthy foods. And she's been losing weight. She lost 5 pounds in 3 weeks-from 81 to 76 pounds so that's enough weight this new psychologist is very concerned. She is ordering lab tests to make sure there is not damage being done medically.

She also referred us to a dietician who specializes in "eating disorders". I am trying to explain to them that this is not an "eating disorder" in my opinion-that it has to do with Grace's rigid viewpoint combined with anxiety, and her stomach hurting all the time. But we shall see what they can possibly do.

The psychologist stated Grace's "rigidity of thinking" combined with these unwanted thoughts ("food is bad" or "Food makes me sick") can become an eating disorder and spiral out of control very quickly. So I am listening to her and doing what I can to make sure we prevent that if possible.


I keep thinking how the heck did an unsupported school environment coupled with a very bad stomach virus get us here???? One year ago she was doing so well, and was happier than I had seen her in perhaps years. It took years to get her to that point, I am worried about how long it is going to take us to recover.

On another note, does any one know any good resources for home school materials for kids with AS?

Only have time for brief comment. Eating disorders are not uncommon among females on the spectrum.

I, myself, am not convinced the underlying mechanisms are the same as for the NT eating disordered. However, it all ends up the same in the end. I don't know if this is what is going on with your daughter, but I would keep an eye on it just in case. FWIW, I have both personal and professional experience with eating disorders.

I would agree with InThisTogether - except, truthfully, I don't know that the mechanism in NT (?) eating-disordered people is wildly different, other than that I'm guessing it isn't brought about by a distorted perfectionist body image due to social expectations. The mental mechanism called "perfectionism" in NTs is basically a type of rigidity.

Take a look here: http://www.goodtherapy.org/blog/cogniti ... ia-0521131 You might actually do well with someone who specializes in eating disorders.

Interestingly, there is a specific therapy for anorexia that is different from CBT; apparently it is thought that CBT requires more resources than an anorexia patient has. The preferred therapy to address cognitive rigidity is Cognitive Remediation Therapy, check it out:http://en.wikipedia.org/wiki/Cognitive_remediation_therapy#For_anorexia_nervosa

Wow, here's even more information:http://www.national.slam.nhs.uk/wp-content/uploads/2014/04/Cognitive-remediation-therapy-for-Anorexia-Nervosa-Kate-Tchantura.pdf

This looks like an area to explore? Seems like there are shared areas of concern at the very least. Plus, most hospitals have an eating disorder clinic - it might be easier to find someone who specializes in eating disorders than someone who understands female autism.

I think you need to rule out all purely physical issues (e.g. check for food allergies, abdominal migraine, ulcers -- given the H. Pylori infection and the high stress/anxiety, whatever things are possibilities). I think this because:

>Being in a lot of pain/physical discomfort a lot of the time can cause stress/anxiety/depression all by itself -- or exacerbate pre-existing anxiety/depression;

>A physical cause, if it exists, might be easily and quickly treated (which would probably help her psychologically....since pain doesn't exactly help a person cope with emotions and stress);

>A physical cause could be potentially serious (i.e. worsen or have long-term consequences) if left undiagnosed and untreated;

>If the pain has a physical cause, no amount of psychological therapy will make the pain go away and the therapy experience itself could be very confusing, frustrating and stressful for a child whose feelings, thoughts and behavior in response to/about the pain may be quite normal if they are being treated like the whole experience begins and ends with something being wrong with their mind;

>If the cause is purely physical, or mixed (i.e. co-existing stress/anxiety exacerbating a physical problem and then the physical problem exacerbating the stress/anxiety in a downward spiral of misery), then it seems like there's a risk of your daughter learning that she should just ignore or treat pain/physical discomfort as psychologically-caused regardless of whether or not anybody has actually looked for physical causes and regardless of whether or not psychological treatment/improvement is helping the physical symptoms -- and that is a dangerous lesson to learn, both in terms of psychological and physical health. (Going the opposite direction with assumptions wouldn't be any better, but it sounds like all the professionals are jumping to the conclusion that your daughter's stomach pain is psychological without doing any actual medical investigation.)

Re: the eating disorder thing......It seems like a pretty natural thing to not want to eat normally if your stomach is bothering you. In terms of preventing a long-term food phobia developing from an association between eating and stomach pain, I think that doing proper medical investigation to rule out physical causes is really important -- if there is a treatable physical cause, then I would think treating it would probably be the most effective preventative strategy available....

I would have her thyroid checked to rule out hyperthyroidism. That can cause anxiety and frequent bowel movements. Have them do a full thyroid panel.
Thyroid problems can also aggravate neuropsychiatric traits.

I would also have her tested for campylobacter or other bacterial gut infections. Campylobacter can linger in some individuals.

If you have ruled out infections then it might be that she has OCD or OC traits and is under a lot of stress at the moment, which aggravates the condition. Stress can also cause stomach problems. If this is the case, the non-medicative approaches to this would be as follows.

1. Remove big stressors and points of instability from het life. If there are family problems you cannot resolve, see if a relative can offer a healthier environment for her.
2. Make sure she is getting at least 8 hours of sleep at night.
3. Make sure she is getting a good diet and regular exercise.
4. Try to keep her on a schedule so she knows what to expect.
5. If something or someone is stressing het at school, diffuse the situation.
6. CBT if she had OCD.

Medicative approaches....these should be last resort, not first.
1. If she has OCD, Prozac might work better than a tricyclic but these medications generally do not work better than CBT for OCD.
2. Haldol. This is an antipsychotic but it has a sedative and apathy inducing effect that can stop cyclic anxiety and panic attacks and get the brain out of the mode it is stuck in.. It can only safely be used for a short period of time, as it can cause nerve damage but the it can be very effective. She will not be a particularly functional person while on it though.

Its always best to avoid medications if possible though...at least in my opinion.

...
5.

Hi Mama to Grace----I haven't been here too much in the last few years, but I remember when we seemed to be on at the same time a lot. I am sorry to hear of the troubles you and your daughter are facing. I don't really have any advice, but I am wondering if she does have it in her mind that if she eats she will get a stomachache, so she is not eating, which in turn gives her little to no energy, which then causes her stomach to continue to hurt.

I know my son (9, almost 10, has a tendency to think that if something happens a certain way 1 time, then it will happen that way every time and we really have to talk him through those things)

Also, probably just the trauma of going back to a larger public school as been a shock to her system.

You have gotten a lot of good advice here, so just hang in there.

My son only has one more year of elementary in public school, and so far he has done fine and is enjoying it, but I am not looking forward to the middle school years!

I am a teen who has Autism and anxiety. I get panic attacks and I am risperisonde, aripiprazole and fluoxetine. They are all fundamentally for my anxiety (and depression) but when I get anxious I have stomach aches. This could be a cause for the stomach aches. Luckily there is other medicines including the ones I've listed to help your daughter. As for not being able to go to lessons, see if you can get a mentor so they can teach her. Then introduce her slowly to lessons, for example only going to one lesson for a few days, then two e.t.c. For the panic attacks, has your daughter tried breathing in a paper bag. It might be worthwhile having a few in her bag so in case a panic attack herself or someone can get it and help her breath in it.

Just wanted to give an update:

After over seven months of chronic stomach pain and over eight months of regular panic attacks, my daughter is finally doing much better. She has had no (or very little) stomach pain for almost 3 weeks now. She has had only 1 panic attack in the last month. She was put on fluoxetine by the psychiatrist and we saw results within 1-2 weeks. She is getting out of the house and has not been fixating on things.

I know this could be a temporary bump due to the medication but I am hopeful!

We have plan to homeschool this coming year with a tutor 10 hours per week. She is very happy about this.

I think this experience was due to her being completely overwhelmed and unsupported in school. She was holding it all in and even she didn't understand how the stress was affecting her physically. She now sees a counselor 2x per week and is finally actively working on managing the stress. It's been a horrible experience for us but I am hoping it's finally turning around.

Yay! That sounds terrific, I am so glad - I've been thinking about you and your daughter. Just the fact that she's willing to work with a counselor is HUGE (DS absolutely refuses, so we have to work around it. Not that I wanted to be a Mom AND a therapist, especially when I am middling at one and totally out of my depth at the other - but you do what you gotta do.)

It seems like everything in parenting a special needs child is two steps forward and one step back, but the important part, even if you hit a bump or two, is that she's gaining momentum and moving forward. I am sure that didn't come easy for either of you - congratulations to you both!

That is great news that she has turned a corner. I hope the homeschooling works out and keeps her anxiety down. Keep us posted!

Thanks! She is very excited about homeschooling. I've found a curriculum I like and I am very positive about getting away from the mainstream school. Just last week my daughter told me she had a dream she was in the halls at school and the kids pushed her down and trampled her. I think that's a sign she still has lingering anxiety about the experience.

She is excited about learning for the first time in a long time because there is no anxiety around it. I have adopted a new mantra to focus on her strengths to build her confidence back and not focus on her weaknesses. At least for a while. She is super smart, I have no worries about her becoming illiterate---but the curriculum I've found is rich in history, geography and world cultures (which she loves).

When I had time to stop and think about what the mainstream school teaches our kids-in that one size fits all way-and then think about what I would want my child to learn if it were my choice-it really opened up my eyes. I'd like her to know about music, art, astronomy, chemistry, culture, and literature. And basically, when you are learning about exciting things I think it fuels your desire to want to know more. Instead of the "memorize this then take a test" approach we will explore. So I hope I am up to this challenge. She has 2 tutors for 10 hours per week to help me facilitate and she has really bonded/taken to the tutors. They are young and freethinking and creative.