Choosing Therapies And Treatments

                It’s one of the first things that you’ll start to look into and you’ll quickly discover that there are lots of different therapy options for children with autism.  It is not my intention to start comparing them and weighing the merits here.  There are some excellent books that explain that and a wealth of websites for and against almost any kind of autism therapy you can think of.  Instead I want to focus on what you as a parent should be looking for when choosing a therapy and a therapist.

1)       Trust:

                The biggest thing you need to look for is trust.  If the therapist works well with your child and he or she is making progress, then you could be dealing with this person for a long time.  You need to be able to talk with the therapist, sharing any concerns you may have about your child’s progress, the therapy program or your ability to do the therapy at home.  If you’re not comfortable talking with the therapist because you feel intimidated or shy, then that relationship is not going to work.  You are the expert on your child and they are the experts in their field, together the two of you can combine your expertise to create a program that works.

                You also have to be able to trust them with your child.  Be aware of any gut-level concerns you have.  Your child may not be able to tell you if they feel frightened or upset.  With a child with autism it can be very difficult to determine if a tantrum is because of the autism or if the child is trying to tell you that he or she is not comfortable with this person.  Again, you are the expert on your child.  Trust your gut and investigate any situation that bothers you.

                There have been well qualified therapists who I simply couldn’t work with.  For whatever reason, there was a personality conflict where we just rubbed one another the wrong way.  In one case, a worker had been assigned by a community group and I had to call and ask for someone else.  I felt very embarrassed and guilty, thinking that maybe the group would assume I was being difficult, or that I doubted the therapist’s qualifications, or that bad feelings might end up jeopardizing my son’s treatment.  In the end, they were very understanding and I got a worker who I was much more comfortable talking with and who turned into a valuable source of information and help.  In another situation, I had hired a particular company and while they had all the right credentials on paper, in practice they didn’t work well with my child.  I gave them a good chance, tried to talk to them, but it was as though they were convinced that I didn’t know what I was talking about when it came to my child.  I found another company and fired them.  Don’t talk yourself into being “nice” or not making a fuss.  This is your child and you have hired these people to help you.  You should be treated with respect and compassion.

                I’ve made an effort to sit in on just about every therapy session my children have ever gone to.  Not only is it a good teaching opportunity for me to learn what the therapists are doing and how to do the exercises properly, but it means that I know how the therapists interact with my children and how my children interact with the therapist.  I try to stay well back and strictly observe rather than offering comments or prompting my child.  In some cases, I’ve used a camera to remotely view the session so that my child wasn’t distracted by my presence.  Find a method that works for your schedule and comfort level.  As one US president said:  “Trust, but verify.”

2)       Cost:

                One thing that everyone can agree on is that autism therapies are expensive if you opt for private therapies.  And there are usually huge delays and wait times if you have to rely on publicly offered therapies.  It’s not uncommon for families to lose their retirement investments or home equity in an effort to fund their children’s therapy.  While it can be tempting to just throw as much as you can at the problem, remember that this can be a marathon challenge.  Your money and resources are going to have to stretch.  Apply for grants and subsidies everywhere you can.  My friends know not to ask me to do anything in March because I’m busy filling out a dozen or so application forms for the upcoming fiscal year.

                The money available is usually a limited pool and its important to make every dollar count.  If a therapy charges a thousand dollars per session and another only one hundred, then consider how effective you think the therapy will be and how many sessions are going to be required.  You’re the only one who can make these decisions and they can certainly be overwhelming to consider.  Again, trust your instincts.  You know your child.

                It’s not uncommon to get caught up in chasing a “miracle cure” in treating your child or to put your trust in an authority figure.  If something works for you, that’s wonderful and I wish you the best.  But there are a lot of companies making a lot of money off of parents’ desperation.  Some of them have the best of intentions and others are in it for the profit.  We have to give our son a liquid vitamin supplement because he can’t tolerate a pill.  A pharmacist offered us a “custom blend” which we later discovered was effectively the same as an over-the-counter option which was only a third of the price.  If we had done our research, we would have saved ourselves a lot of money which could have been put towards other therapies.  So do the research and weigh the options before plunking down your cash.

3)       Monitoring:

                Another idea for tracking how well your child is doing in his or her therapies is to do a mini-evaluation every three months.  Progress is usually gradual and things can look like they’re standing still if you check on them too often.  For example, I was concerned about my son’s aggressive behaviour, his self-injury behaviour and his ability to communicate and I made myself a little set of notes:

January:                Speech:  Average sentence 3-4 words, asks verbally when prompted
                                Aggression: 15-20 incidents per day needing intervention
                                Self-injury: 10-15 head bangs per day

After three months, I made another set of notes:

April:                      Speech: Average 3-4 words per sentence, asking verbally spontaneously.
                                Aggression: 5-10 incidents per day needing intervention
                                Self-injury: 10 - 15 head bangs per day

                I still do regular checks on both of my children.  It isn’t a huge amount of data to collect but it gives me a rough idea of how they are progressing.  In this example, my son might not be using more complex sentences, but he was getting the idea of asking for something verbally.  His aggression to others was going down but he was still injuring himself regularly.  That let me know that our current program wasn’t addressing the needs that were making him bang his head.  You are going to have to monitor how your child is doing, this can be a relatively painless way to do it.  Other parents chose to write themselves a letter detailing what their child was doing, or make a little video of their children.  If you can find a way that fits in naturally with you and your lifestyle, then it’s one less stress to have to worry about.

                This kind of monitoring can also give you a chance to go back and appreciate how far your child has come.  There are things that we used to monitor that we don’t have to anymore.  That can be a nice bit of encouragement and we can all use that.

Privately-funded vs Publicly-funded therapy:

                If you’re lucky, there is a government-funded autism therapy program in your area.  Most likely, there’s an extensive wait-list for it.  We had to wait over two and a half years for our name to come up on the list for services in our area.  Luckily, we were able to send our son to private therapy in the meantime.

                Navigating your way through the various groups and treatment options can be very confusing.  Parents who have already been in the system are a great resource to help you figure things out.  Some will have been happy with their services and some will have been unhappy.  But they can tell you what to watch out for and how to make your way to get what you want.

                There’s a big difference between how public and private therapy works.  In private therapy, the therapist is hired by you directly.  Don’t like them?  They’re gone.  In publicly-funded therapy, the client is the government (or in some cases, a charity).  The loss of total control can be difficult for some parents.  Another difference is in the goal of the system.  Publicly-funded therapy is aimed at helping the children of the community.  Private therapy is aimed at each child in particular.  This may not seem like a big difference but it’s the biggest source of conflict between public therapy and parents.

                A lot of parents dislike the public therapy system.  They complain that the system is too quick to dismiss children.  Learn too quickly and you’re out.  Learn too slowly and you’re out.  Sometimes it seems as if the system penalizes those who have tried to help their children with private therapy.  To a point, this is true.  Remember that the focus is on helping as many children as they can.  If a child is not responding to the therapy, they want to offer that spot to a child who will respond.  If a child has reached his or her therapy goals, then they need to move on to something else.  If choosing between two children, one of whom has had extensive help and the other who has not had any support, the system will usually choose to help the one who has not had the opportunity.

                Try to remember that these decisions aren’t personal about you or your child.  Gripes from disappointed parents can taint your experience in therapy.  I know parents who decided not to listen to the therapists in the public program because they thought the therapist was only trying to rush them through.  In my opinion, they wasted a valuable opportunity to get some help.  The therapists do want to help children, that’s usually why they became therapists.  The public system does have its limitations and if you can accept and work within those limitations, then you and your child can benefit.

Dealing with a publicly-funded program:

                I recommend that every family sign up for public services.  See what’s available in your area.  Find out what the wait-list is and find a way to remind yourself when your turn is coming up.  If you have to send away paperwork, then confirm that it’s been received and that your child’s name is actually on the list to wait for services.  In the very worst case, when your turn comes up, you’ll be disqualified.  But if you do qualify, then you can get a break from the financial burden of paying for private therapy.  That respite can make a big difference for the family.

                Try to get everything you can from the public services you qualify for.  If you have a few sessions with a speech therapist, try to learn everything you can about how to help your child at home.  It’s an opportunity to bring up situations that have you stumped about what to do and get new ideas of things to try.  More intensive programs often ask for more direct parent involvement and may offer training sessions.  Again, it’s a good opportunity to get professional advice.  Try to follow along with the program’s requirements as much as possible.  If there’s something you really disagree with, be up front and clear about it.  No one should ever try to force you or your child into something that you’re not comfortable with.  But you shouldn’t let doubts about effectiveness sabotage progress.  If you agree to do something, then do it as consistently as possible, even if you don’t think it has a chance of working.  If it doesn’t work, then you can try something else with a clear conscience.  It’s almost impossible to predict what your child will respond to, so it’s important to give things a fair try.

                You should still make sure that you trust and are comfortable with the therapists who are working with your child.  If you have concerns about one, then bring it up with the supervisor.  I’ve called up and explained that we had a personality conflict with an assigned therapist on more than one occasion and for the most part, there wasn’t a problem.  In the one case where they did have a problem with our request, we actually ended up withdrawing our child from the program because of our concerns.  I think we made the right decision.  No matter who is funding the therapy, it should still be a collaboration between the parents and the therapist to get the best results for the child.

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Page Descriptions

Dealing with Diagnosis: Parents talks about the emotional impact of diagnosis. This is a major life-changing event which can leave people feeling isolated, angry and hopeless. You’re not alone in this.

Dealing with Diagnosis: Friends and Family offers suggestions to the extended family and friends of newly diagnosed families. We all want to help and make things better but sometimes the best-intentioned gestures can end up hurting.

Dealing with Other People's Reactions warns of some of the less than positive responses you can expect and talks about the stigma of accepting the "special needs" label.

The Autism World is an explanation of how people with autism experience the world around them. The ability to guess what your child is experiencing is one of the best tools you can have in helping and teaching them.

Tips and Tricks is a collection of suggestions and ideas contributed by parents. I’m always looking for more suggestions to share. Contact me with your ideas.

Choosing Therapies and Treatment isn’t about specific types of treatment. Instead it’s about what you should be looking for in a therapist or treatment expert. Every child with autism is unique and there’s no universal treatment.

Changing Challenging Behaviours is a basic overview of the Applied Behaviour Analysis system. While I recognize that not every child works best with the intense behaviour treatment based on ABA, the system of figuring out what is behind challenging behaviours is an effective way to understand what your child is trying to tell you. Understanding is the first step to trying to change the problem.

Communication offers ideas on how you can help your child with autism to communicate. Without an ability to tell you what he or she wants, frustration quickly leads to behaviour problems.

Referrals for Families are options for families with special needs to enjoy some of the ordinary experiences in life. It lists examples of non-therapy professionals and businesses who are willing and able to adapt to autistic children.

Finding Help: There are three sections, pre-diagnosis, getting a diagnosis and post-diagnosis. It's my attempt to give you a checklist of options.

Helpful Books: A list of books that I've found to be useful, in the order I discovered them.

My Blog is where I share new information, what's working (and not) for our family. Posted daily (mostly).