Autism/How my decision will impact my son?
QUESTION: My son is 16 and 1/2 years old, we received aspergers/mood disorder diagnosis 2 and 1/2 years ago, we the family suspect depression too. High school has been very difficult for him and for all of us around him, now days at school he's uncooperative, rude and his grades are very poor due to the low production of homework and forgetfulness when it's done. The school has been working with us, providing speech therapy and recently BT (1 and 1/2 month ago) his IQ is average, loves music (plays sax and tuba in the school band) and computers..At home he has meltdowns quite often, ending up with broken doors, verbal abuse and so on...,due to the school polices he has preformed only once with the school band during this school year.., he's upset and depressed... but some how he doesn't make the connection (low grades- no performances), the school is feed up..., during the last IEP meeting they told us that the school is not able to provide the kind of services that he needs, and because of that he'll be sent to a RTC in Texas, we live in California.., because of his noncooperation if we send him will have to be without personal preparation and escorted, if he knows time ahead he may run away. This situation is making me feel very uncomfortable, I'm concern about the effect that all this will have on him, I place my self in his shoes and it just feels wrong..., I'm concern about how much he'll learn in the RTC besides academic, social and life skills and being so far from home we wont be able to visit even latter when it be permitted,he may fell like we have abandoned him.., I only want to help him to do the best..., why if some thing is good, it feel so bad??
ANSWER: You ask an excellent question when you wonder what the impact of a residential treatment center will have on your son. Unfortunately, you don't have a crystal ball to predict the future.
It's encouraging that you and the school have been working together to help your son and that they've been providing services such as speech and T. Most school districts are under budget constraints and some parents complain that services are limited. The fact that the school is providing these services indicates their level of concern. Suggesting that your boy go to an out-of-State RTC will not have been a decision the school approached lightly. There will be considerable costs associated with this.
It is difficult to guess just how successful this intervention will be. The outcome may depend partly on the facility, how well its approaches match with the learning style of your son and how receptive your boy will be over time. Initially, it is highly likely that he will not be a happy camper.
What a decision, to have your teen live away from you. That's tough.
Let's look at some of the potential positives from such a move:
- increased maturity
- a guy who takes more responsibility for his own choices and actions
- increased insight into how he responds to his environment
- a larger bag of tricks he can use as positive coping strategies
- the structure of institutions can be very beneficial to many kids on the autism spectrum - the rules will be clear as will choices and consequences
- he may find a talent or passion in the new things he'll be exposed to
- there may be an accepting peer group who understand the challenges and responses your son has
- he may develop some positive friendships
- he may see himself as part of a group, while in his high school, he may feel like he's on an island
- a staff who are all there to assist kids who have major struggles
- staff who may have training that goes beyond that of the typical classroom teacher
- the relationship you have with him might become easier when the meltdowns are not frequently disrupting your household
There is no decision that does not come with some risks:
- you are right that there is a risk of your son feeling abandoned - this could be a temporary thing though and he might be appreciative down the road
- there will be a natural distancing between you and your little boy - he will make some strides toward growing up without you
- you will lose some of the control and decision-making you have over your child since you will not be with him daily
- there is a chance that he may connect with some peers that you would not choose to be his friends
- you'll miss him and he'll miss you
Now, for some questions:
- does your school have a contract with one facility or are there options?
- can you go tour the facility or facilities to help make the decision?
- are you able to meet with the intake people to give a history of your son?
- how often will staff keep in touch with you?
- how often, after the initial settling in period, will you be able to connect with your son?
- is there some flexibility in the program?
- do the staff have an understanding of autism spectrum disorders?
- do they understand the possibly sensory sensitivities that might influence your son's reactions and behaviors?
- what are the qualifications and background experiences of the staff at the RTC?
- what have been the outcomes of past students there?
From what you describe, I agree that your son may be experiencing depression. In fact, you mention that that was part of his diagnoses - Asperger's and mood disorder. (Depression falls under the classification of a mood disorder). It is not uncommon for teens on the autism spectrum to also have some degree of depression. In adults, we often think of those with depression as exhibiting great sadness. In younger people, depression can also come out as anger and aggression.
Is he on medication? If so, is the medication having the desired effect? Getting the right med and the correct dosage is not an exact science and requires close cooperation between the parent, the patient and the prescribing physician. Hopefully, your son is being closely followed by medical people who receive frequent reports as to the behaviors you and the school are observing. Try to be objective in this reporting by stating what you observe, how long the behavior lasts, what happened before the outburst and what happened afterward.
Usually, people on the autism spectrum do not respond well to change. That is not to say that they should not experience change, because that's part of life, but typically things work out better if they are prepared for what that child will look like, feel like and what will be expected of them. I understand your concern that if he's told that he will be moving, he may flee, which would not be good at all.
If it's to be a surprise to him and he'll be escorted to the RTC by strangers, you will not be able to prepare him with a typical social story. Instead, what you could consider doing is writing a social story that can be kept for him at the RTC. Initially, he may be angry and throw it away. But, if you have a # of copies of the letter or social story that you keep and that the RTC keeps, he may be more receptive later. The story could explain why he's there, what you hope for him and reassure him of your love, support and belief in him.
You are in a tough position. You love your boy and want what's best for him. Clearly, what is happening right now is not good for him, nor for those around him. As a mom, it's instinctive to pull your child closer, hold on and protect him from the world. That makes it hard to take a step back and objectively determine what will be best in the long run.
If he continues on this path, is he able to progress academically? Is he happy? Is he safe? Could his conduct or choices lead to legal consequences? Is there something else that could be done to turn things around?
Try to think of where you realistically want him to be in five years and in ten or fifteen years. Then think of what skills he'll need to be successful there and how best to help him acquire those skills. Keep in mind that the longer a pattern of behaviors persists, the harder it is to establish new ways.
But, you know your child best. Listen to your instincts. And, keep talking with your school.
I wish you and your family all the best.
---------- FOLLOW-UP ----------
QUESTION: I've been asked by the advocate if I think that my son is capable of choosing the way he preforms at home, at school with friends...As I mentioned before, his grades are low, he's failing 2 of the 5 subjects in music, what he enjoys has A's, other is philosophy there is not home work for it he has B, environmental cs. with c, Algebra low, c history high d's and sometimes c's and English high d's and sometimes c's too. As I stayed lately his more uncooperative and rude at school and at home every single time that we remind him about chores and home work limit computer time and so on..., It is very difficult to talk to him specially for dad..., with me he's a little more talkative..now and then... I have been trying to understand how his mind works...after all he's my child without instructions. And I don't know if I make sense when I say that yes I.Q. ways he's able to do the work, to follow instructions and so on. But he has problems producing homework and latter turning in. It doesn't matter how many privileges and battles he looses..., And then if he's capable, he's choosing his own destiny going deeper and deeper into trouble...He's not getting the point that every action or non action, follows a reaction or consequence?? Is he happy with the outcome, I'm very sure he's not, Why he's self destructing? why when I ask if homework is to hard for him he says it is not..., (is he ashamed of his own limitations). He says that he doesn't like homework.., this battle with homework has been part of our lives since kindergarten, during the prior years he was able to produce A's and B's (elementary School), during Middle high he produced B's, C's and A's, during the first year of H.S. were C's and B's now in 11th we are where we are, and the question comes is he capable? until middle high I never had a complaint besides the homework, so he's mentally capable but not emotionally, It is possible that during the passed years he was trying very hard to fit in, to conform,that's why he was overwhelmed, sensitive and touchy, like a time bomb after the school day, that he had given it all with no more left for homework..., It is during this year and after a bunch of bad experiences some as a result of his own doing and others situations out of our control, that he has become more rude and uncooperative even at school. It's almost like he's embracing his aspergers and giving up the desire to conform..., combined with pressure and changes of puberty, all in a big pot, resentment, after being twice in the hospital, 21/2 years of wrong therapy, 3 or 4 medications (most likely the wrong ones too.)with side effects clumsiness, sleepiness, weight gain, low self steem, high, cholesterol, high triglycrides, rejected, disenrolled from the school without consent and without our knowledge arguing that 20 days were to many days to keep him in the roll (what happened to the ADA?) so, do I make sense when I say that mentally he is capable but emotionally he's not... due to his experiences, puberty and aspergers? that depression is pulling him down to a very dark place where trying is not even worth at least for him??? Or it is defiance like the school is inclined to think???
Hi again Teresa,
To your initial question, yes I do think that SOME of the time, these decisions are likely under his control. He's a teenager and what teen does not show a certain amount of willfulness? From what you describe, yes, I would guess that sometimes he chooses not to respond or comply. The "you can't make me" attitude is not untypical at his age.
But his choices go far beyond normal teenage rebellion. As you point out, what he is doing is not productive nor will it help him in the future.
People who are depressed don't necessarily care about, nor think about their future. Many teens have trouble seeing farther than the next month, but a depressed young person would have even more difficulty seeing how current actions will impact later ones. Nor may he care about the future, at this point.
I'm not sure though about the words you use "embracng his Asperger's". The actions you describe are not descriptive of a kid with Asperger's but more of a young man with depression.
You mention medications. Getting the correct medication for an individual's body chemistry and metabolism is not easy. There is no manual that tells you which one will work for any one person. Unfortunately, it's trial and error. Plus, it takes time. Many of the meds will not take full effect until they have been in the body, taken regularly for two or even three weeks. some side effects linger while other go away. If the medication is not helpful, the prescribing physician needs to know so the dose can be altered, the timing of the doses or a different medication tried. You do not want him sleepy or clumsy; those are side effects or dosage concerns that the physician needs to know about. From what your son is experiencing, I would suggest that it is worth persevering until he finds one that suits him.
When he is prescribed a medication, do you think he actually takes it? At the correct times and regularly? That would make a difference to its efficacy.
To answer your last two questions, yes I would think that defiance is part of it, but this could stem from depression.
It sounds like you are doing so many things right. You're working with the school, you're applying consequences for your son's choices, you're looking into whether or not he can actually do the work that's given and you're working with your school. You are concerned about your son not taking responsibility for his actions and choices.
You sound very worried, understandably. I would hope that the RTC you and the school choose will help address these issues.
It's tough, isn't it?