Expert: Dr. Sharon A. Mitchell - 2/5/2011

Question
Dear Dr., I hope you can help us, we are at our wits end and losing our sanity. We have two sons with severe Autism, the younger one does not have bad behaviors, but is non-verbal, the older one is 15 and a big boy, six foot and 220 lbs. I am 5'2, if that helps you understand part of the situation. He has been self-injurious for many years,biting his left arm (always in the same spot, the skin is now calloused#, pinching himself on his upper left arm, pinching his right thigh, hitting himself in the head hard!, when he is really mad he will slap himself in the eye,slapping both thighs,hard!but it has increased over the last few years, and over this last year he has become aggressive toward others,hitting,pinching,pushing,scratching,spitting#its more like a spray across your face). He also has severe OCD, he has these phrases he wants you to complete, he cannot get past it until you finish the phrase, believe me we've tried. He also has what we call "trigger" words that set him off, so you better avoid those words or you will have a problem, he now has about 20 words that you cannot say & they are common words, so you have to substitute another word for it, example you can't say ok or alright but you can say "yes". He also screams like he is being murdered, & if you happened to be in public, all eyes are on you. I really don't know how to help him? he is miserable in his own skin about 75% of his awake time, & its worse at school, he hates any redirection even if its not aimed at him, he explodes.He is on several medications & we have tried around 30 different meds, & never really found one that was great. We are at a point where he is very difficult to live with, but I love him & I don't want him to live somewhere else, I don't know that anyone else could put up with it either! they are our only children, so we have no normalcy in our lives, because they both have Autism & we have no other children, I feel like our whole life is about Autism, & how to fix this or that problem, I can't believe this is what my life has become? I have always felt if we could control the OCD, his behavior would get better, because it usually drives it, but we have been on all the meds for ocd & nothing touches it! our Dr. won't go up in dosage, because his heart would need to be monitored, & of course I don't want to risk his health, please help me, I know this is aging us more & more everyday, and I find myself feeling really  sad that I can't improve the situation, even with medication, so its pretty frustrating, thank you for listening and hopefully helping.

Answer
Good morning Rhonda,

I've read your story over a number of times and my heart goes out to you. It sounds like you are already doing so many things right.

The first thing that comes to my mind is respite. That is something you don't mention.

No matter how much you love your child and how devoted your and your husband are to his care, you need a break. This can be hard for parents who may initially feel that wanting time away from your son lessens your committmen to him. That is not so.

Respite is a temporary, short-term break. For all of you. It could mean that someone comes in to your home on a Saturday afternoon to allow you to go shopping alone, or have some time with just your husband or with your other son. Respite can mean someone comes in overnight or for a weekend or that your 15 year old spends the time somewhere with a respite worker. Respite might be offered by one person in your home, in their home or in a group home. The possibilities are governed by what is available, what can be devised and what suits you the best.

I don't know how connected you are with autism support groups in your area. A starting point would be The Autism Society of America (http://www.autism-society.org/). From their website you will find contact information for a branch near you. They will be familiar with the respite and other additional avenues of assistance for your family.

Some kids with autism benefit from a mentor. This can take many forms, but often the mentor is someone who comes to take the teen out of the house. This gives the family a much needed break plus provides the ASD person with an activity they enjoy plus attention devoted to them. Sometimes even kids who are very involved with their autistic and other symptoms still enjoy time with their mentor. Again, the Autism Society of America may be your source for information on this possibility.

Accessing respite is NOT the same as having your child go live elsewhere. In fact, adequate respite might mean that your son can remain living with you all that much longer.

Some parents report a lessening in symptom severity when they try a gluten-free/casein-free diet. Here is some information on this: http://www.gfcfdiet.com/ and http://www.nourishinghope.com/

I agree with you that curbing the OCD might make the rest of the behaviors easier. It is frustrating to go through the gamut of medications and not find anything effective. I certainly understand your concerns about not causing possible heart damage to your child.

This might discourage you, but I would suggest revising the whole medication issue. If it's been years since certain meds were tried, things may have changed in your son's body as he goes through puberty and his hormones more closely resemble that of an adult man.

While legitimately, his doctor is reluctant to increase the dose of that particular medication, fearing heart complications, there are an array of possible meds (of which you're aware if you've already tried thirty!), some of which may work better for him at his age, body weight and hormone level. Or, certain combinations of medications may produce better results.

Sometimes it is difficult for a doctor to tailor the meds just right. He does not see the child daily. Sometimes a doctor does not understand the daily stresses on a family or school or even that things can be as tough as they truly are for all concerned.

It may help if you kept a daily diary of behaviors to show him. This does not need to be a lengthy essay, as I doubt you have time in your hectic day for a lot of writing. Instead, just a piece of paper with the date at the top, a column along the left for the time the behavior started and stopped, then a column to its right where you could give a brief description of what happened.

Or, you could devise a checklist. At the top of the page have a blank spot for the date. Along the left is a column for the time. Then create columns across the top for behaviors that you son commonly shows, such as biting arm, slapping eye, hitting head, etc. Then when you observe the behavior simply put a check mark.

You mention that things are not easy or may even be worse at school. The school can be your staunchest ally in all this. You could ask them to keep a similar diary to that which you are doing at home and add their observations to those you present to your doctor.

Is your son seeing a psychiatrist? Someone who is familiar with autism spectrum disorders? Do you feel that this physician has a good understanding of your son and what life is like for him? If not, is there a possibility of switching doctors?

Since you seem so well versed in autism, I'm presuming that you have already had the assistance of an occupational therapist. If not, OTs can be of great assistance in figuring out sensory triggers that may exacerbate your son's agitation, as well as finding sensory strategies that will be calming to him. If you have not had the services of an OT, contact your school, your physician and the Autism Society to find one locally.

In the interim, there are some sensory strategies you could try on your own that won't hurt him and could possibly lend him some relief. A bean bag chair is comforting to some people - the feeling of pressure as they sink into it can be calming. He could wrap a blanket or large bath towel around his shoulders and torso and pull tightly with both hands grasping the opposite sides of the towel. Does he feel calmer in a dark, quiet space? With younger children, sometimes a tent or large cardboard box (such as a fridge or stove comes in) can be a safe refuge, or a tent made out of a blanket thrown over a table. Does swinging or rocking calm him? Does a weighted vest or weighted blanket help make him feel better? Many companies sell them or you could make your own. Here's an example: http://affordableweightedblankets.com/

I presume that you are familiar with the use of visuals. Most people with autism, even those who are verbal, take in information that they see much easier than what they hear. When we're upset, we tend to talk and to talk at the person with ASD. Unfortunately, that can often escalate things. The more upset the child is, the more difficulty he may have making sense of our words. Ths is a time to speak less and demonstrate what we want with hand signals or pictures. A good website for information on this (and for free pictures) is www.do2learn.com.

As you know, people with ASD often have trouble making sense of their world. That is why they may cling to tightly to routines and are thrown when something unexpected is thrown at them. Using a visual schedule can often allay many fears and help the person remain calmer because they can see at a glance how their day will go. Again, www.do2learn.com is a nice source for visual scheduling information.

Going along with this use of visuals is the strategy of using social stories that describe to the person what is going to happen and what will be expected of him. If you do an internet search for social stories, you will find a lot of help.

Here are a couple books on social stories that may help. They may be available for borrowing at your local library, the school or the Autism Society:

The New Social Stories Book http://www.amazon.com/Social-Story-Revised-Expanded-Anniversary/dp/1935274058/re...

The Social Skills Picture Book for High School and Beyond http://www.amazon.com/Social-Skills-Picture-School-Beyond/dp/1932565353/ref=sr_1...

Author Linda Hodgdon has a couple books I like for their ease of reading and practical, doable suggestions:

Visual Strategies for Improving Communication http://www.amazon.com/Visual-Strategies-Improving-Communication-Practical/dp/096...

Solving Behavior Problems in Autism http://www.amazon.com/Solving-Behavior-Problems-Autism-Strategies/dp/0961678623/...

I have known other children with ASDs who are similar to your son. I know this is a drastic solution, but sometimes there children are hospitalized by their psychiatrist for a few weeks. During this time they are weaned off current medications, then new ones tried under close supervision. Staff monitor possible side effects as well as how well the meds are working to alleviate the most bothersome symptoms. Having your son away from you would be hard and placing him in hospital seems frightening, but it might be one way of getting him help. Having medical staff witness his days would also remove any doctor's feeling that, "Oh, it can't possibly be that bad at home." Unfortunately, sometimes a person who has not walked in your shoes will not understand just what a day in the life is like.

The last point I hae is concern for you. Not only for your mental well-being, but for your physical health. If you are too worn down, what help will you be to this family that needs you so desperately? If you don't have some time for yourself and for your husband to recharge your batteries, you may not be able to continue. Accepting respite help may permit you to continue doing what you do.

Although you are obviously devoted to your children, you are but one person, or you and your husband are but two people who cannot continue to be on constant duty without any down time. I don't know where you live, but there is some type of social service or child welfare agency in your locality. I am not suggesting that you give up your child to the care of a state agency. But many such groups have as their goal to keep families intact as much as possible. This may mean providing a variety of supports where needed. Support could come in the form of some respite, as I mentioned earlier. It could mean an aide who would spent time with the child, allowing you some free time. It could mean someine doing housekeeping chores in your home for you. Social workers don't necessary have a mandate to take children away from their parents. Their goal may be to lend support so that you can continue to care for your children. It's OK to need a little help, especially for someone in your position who is doing such an admirable job.

The other concern I have is for you physical safety. Your son obviously will not wake up one morning with the intention of harming his mother, but the very real possibility is there that he could inadventently hurt you or his younger brother or even your husband when he is greatly upset. That is another reason to push the medication issue and to bring in other people who can help you. If you are having trouble accessig more services and your son becomes violent at home, although this may seem drastic, you may call the police. Your goal would not be to have your child arrested, but to protect him from himself or other family members from him. Sometimes once there is any level of legal involvement, other services quickly fall into place.

Again, I feel for you - the turmoil you are under, the physical and emotional stress and watching your son be unhappy in his own skin. Your kids are lucky to have you in their corner.

All the best,

Dr. Sharon A. Mitchell
www.autismsite.ca