Autism Therapies

Hi K.,

There are no real hard and fast answers to the questions you asked. I think part of the feeling of being in the deep end of the pool is that when your child is first diagnosed, you don't really even know what questions matter, let alone where to go for the answers. I know that feeling well, I have two children on the spectrum, and the oldest is almost 19. That feeling lead me to get training as an eduacational advocate, so let me answer some questions for you, but maybe not exactly the questions you asked, but ones that you need the answers to as well.

Let me first say what I can about your questions. For #1, you just have to try a therapist to see if you like them. I depended on my Developmental Pediatricain to make good referals for me. If you do not see a DP, make an appointment, and let them put together a full treatment plan for you, based on the data of a full evaluation. Some of your choices will depend on who is in your insurance network and if you can afford to go outside your network. Lastly, as far as therapy goes, I don't know which kinds of therapy you are seeking, but my advice is to stay with standard care and not spend any money on a "cure" unless you can afford to lose that money and have plenty to spend on the standard care at the same time.

A good therapist will tell you what they are doing and why. I am going to suggest some reading for you. Log on to www.wrightslaw.com. Find an article called Understanding Tests and Measurments for Parents and Advocates. Read it, you may need to read it several times, but read it until it starts to make sense. Then, get your son's evaluation out. If you think things are missing, get more evaluations so that you know exactly what your child needs to work on, and you have evaluation data that gives you a score for that particular skill where he was functioning, then, ask that they express his progress based on that measurable score, or another measurable score that you understand. A good theapist will be doing this with you on a regular basis. This is also how you keep track of his progress at school. Read the school evaluation (I hope you own one from a DP too, if you do not, get it, which is the very best advice I can give you) but read on the wrightslaw site about smart IEP's and measurable goals. You will probably find goals on his IEP that you agreed to that you will see are not measurable. Do not fret, go to the next IEP meeting prepared to advocate for better, more measurable and meaningful goals for your son. Your private evaluation will be very valauable for this purpose. It keeps the school honest, and if you have a good, full, thourough evaluation from a developmental pediatrician, you know more about what you son needs than the school does...and it should always be that way.

The key then, is for you to have a full evaluation of your own, and to negotiate as much from the school as you can, then for you to provide the rest in private thearpy so that you maximize his potential. The school is required to make him functional, and you must provide the rest. This also makes you seem like a colaborative parent and this will go a long way toward a good working relationship with his school.

For #2, what worked for me, might not work for you. If my child needed something new, we made it happen, and we usually added something when something either quit working or something new popped up. I can tell you that the leap to 1st grade was one time to keep watch, as was 3rd grade when other children become more sophisticated and there can be issues. 12 for girls is kind of rough (can't tell you about boys) and puberty is a real challenge. Count on this: as soon as you think you have it figured out, it is going to change. Development is a moving target.

#3, sadly, there is no answer to this question. They either get it, or they don't, or they pretend to, or they blame you, but you have very little influence over how people are going to react to your son and his autism. People have their own opinions about your son, and because he is part of an "epidemic" there are going to be people who out and out just tell you that your son's not really got a problem because it is over diagnosed, they don't beleive in it, you must have had pitocin, you did not breast feed, you have never tried time out, you must have spanked him...all kinds of nutty stuff. You will have to grow a second skin. Every few months, an old "friend" will come to you with this great new thing...oh, and they are selling it...they have heard it really cures autism...and high colelstorol, baldness, PMS, and foot fungus too...ignore them politley. You will have so many people say something like "I was just like that, and now I am fine..." you will sometimes have to keep from laughing because you are so hopping that your son does not turn out like they did!

At this point, I don't feel the need to talk to anyone about my kids therapies. They have current evaluations, they see a psychiatrist for medical care (don't fear medical care, it is very helpful for some of the symptoms of ASD, you treat what you see, when it becomes an issue, and it is a great tool for them to be more successful.) They have school interventions, and private thearpies for speech, OT, cognitive behaviroal, and vision. They have also had social skills classes privately. One suggestion for you is to find a Developmental Optomitrist (ask your OT) and have his vision tested for visual perceptual, visual motor, and occular motor issues. These can be weak for kids with ASD.

Bottom line on #3, you just can't keep people from judging you; if they are going to do so, they are going to do so even after you try to explain it to them, and if they are going to be sensitive and supportive, they will probably ask you to inform them and they would not be second guessing you anyway. You cannot change the nature of people in general, and this issue seems to spaun all kinds of redicululous arm chair opinions, but very few will have any direct knowlege, so start growing some skin. It hurts the most when it is your family, and I don't have much more that will help you with that, accept to say that you are not alone.

I don't get your number 4, I talk to my spouse all the time, and we re-evaluate when our kids need it, a doctor suggests it, or something significatn changes. I make most of those decisions, but I am guided by our doctors, which is a great comfort too. As for school evaluations, he should be re-evaluated when he reaches school aged (grade 1) and every threee years additionally. As my kids aged, we had private evaluations less frequently, you will know when you are no longer needing to do this yourself. For now, more information is better.

I hope some of this helps you.

M.

You may wish to check out The Autism Society of Minnesota. They offer parent education and support. www.ausm.org

Having autistic twins myself, the first question is fairly easy to answer. If the two don't seem to be clicking, then maybe that's not the right person. Or if they are attempting to teach concepts way over your child's head instead of meeting him where he is, that's a bad mix, too.
Adding new things in depends on how well he deals with change.
As far as talking to friends and relatives, you've entered the world of some get it and some don't. I think you've a tougher road if he's on the mild end because some will always see it as your excuse for his behavior. Just be calm and straightforward when explaining it even if you must do it several times.
If your spouse is onboard and willing to be very involved you should talk frequently about observations of current therapies. Since you're asking these questions, I'm guessing something doesn't seem right to you? Keep looking until you find what works for you and your child. You've had 4 years to see what does and doesn't work for his learning styles. I don't know. I've been swimming in this river for almost six years and I still feel like I've not learned to swim yet. My kids are on the lower end, though and one is nonverbal; the other talks a little.
Good luck and hopefully someone else has much better advice.

I have a good friend that did an elimination diet with her daughter with autism and she improved leaps and bounds. It eliminates things like artificial colors, flavors, and certain preservatives. They give you a book with the foods that are allowed. Over the holidays they fell off track, and had a relapse. She is now back on the Feingold Diet and she is doing GREAT again! I would check it out! www.feingold.org There are tons of testimonials there. Blessings! R.

1. Bad therapist usually quit your son soon or say things like, "he will never learn to . . ." Or they are prescription drug happy, or they lump your kid in with the kids with mental retardation. A good therapist has lots of hope and optimism, loves your kid, and teaches VISUALLY to your son, not be repeating the same stuff verbally over and over. They should have LOTS of pictures for your son to learn things, not talk talk talk talk.
2. Keep the schedule the same for a long time so that it is predictable for your son after a while. The schedule should be known to your son and visual, so that he can anticipate changes with less chance of a meltdown.
3. Depends on your family/friends. If they are too judgemental or 2nd guess you, then keep your communication about your son brief, brief, brief and change the subject to other stuff.
4. I don't know. I know a big mistake people make is to not give a therapy time to click and keep changing their approach. Make sure your kid is not always being evaluated for is behavior at home. Let him have down time to do whatever relaxes and brings him joy. he is only 4, and remember that typical 4 year olds all need down time.

My sister was seeing a psychiatrist for autism and she used to cry all the way there. My parents changed her to a new psychiatrist and she was happy. A few years later the first psychiatrist was in the news because he killed his family and himself. I learned from that to always listen to my kids if they were upset about daycare or school. If your son is upset with a therapist I would definitely find a different one.