Its time for Frequently Asked Questions part II :-)
Part I was pretty popular so I decided to do a part II of even more questions that people ask me all the time.
So lets jump in...
- Will my child with Autism EVER talk/have friends/use a toilet/live independently, etc.? This is a very common question. The short answer is, no one can tell you definitively. The longer answer is with the correct recipe of intensive treatment, well qualified therapists, excellent parent education and training, and a commitment to consistency, any child with Autism can make great strides and permanently enhance their quality of life. There are just too many variables involved to be able to say which child will enroll in college and live alone, and which child will need significant care for the rest of their life. Its good to think about and plan for the future, but parents please don’t drive yourself crazy with endless “What If” questions about what the future holds for your child. Appropriate planning and consideration for the future is good, incessant worrying and anxiety is not.
- I think my child may be on the Spectrum, but Im not sure…..she isn’t like those kids you see on TV who have Autism. Maybe she will outgrow it. Autism is not one –size- fits- all. These children differ greatly from each other. Media portrayals of Autism can be very one dimensional sometimes. Several years ago, every person with Autism was “Rainman”. Now it seems every person with Autism is “Bill Gates”. The pendulum has swung from exaggerating all Autism as a severely debilitating condition, to exaggerating all Autism as just a quirky or odd personality. Do not let the media tell you what Autism looks like, because the reality is Autism can look like anyone. Look for red flags: communication, social interaction, play skills, eye contact, and joint attention deficits. As a parent you know your child best. If you have a hunch or gut feeling that something may be wrong, get an evaluation done. The sooner you get a diagnosis, the sooner you can get services.
- What causes Autism? This question is such a political hot topic right now. The very PC answer is that currently, it is unknown what the cause of Autism is. My non-PC answer is that in some cases Autism may be caused by genetic predispositions or heredity and in some cases Autism may happen after the child is born. Many parents feel that their child “became Autistic”. Other parents tell me that they always knew their child was a little “off” even from infancy. I think there are many causes for Autism, and not one smoking gun. What is more important is to focus on what to DO about your child with Autism and move out of the phase of searching for the cause.
- My main therapist will be unable to work for 6 weeks, and we are freaking out! Who will cover those sessions? It is always preferable to have more than one ABA therapist, and this is a big reason why. When you have multiple therapists its easy to cover sessions that are missed due to illness, vacation, car trouble, etc. Another reason for multiple therapists is you don’t want your child to get too attached to being taught by the same person. Over time this could cause over-generalization issues and your child may find it difficult to work with anyone else. However if you only employ one direct therapist in your home and that person needs to miss sessions for any reason, guess who the backup therapist is? YOU. In the therapists’ absence it’s the parents responsibility to step in and provide therapy. You should be so knowledgeable and comfortable with your child’s ABA programs that with minimal training from the therapist you could run a session in their absence.
- If my child never recovers, is it my fault? Dr Ivar Loovas rocked the scientific community when in 1987 he published his groundbreaking study about how to use behavioral therapy to teach children with Autism. The results of that study showed that under the best conditions 47% of the children enrolled reached normal functioning levels. Literally hundreds of replication studies have been done and all have reached similar results. So what does this mean? It means that under optimal conditions slightly less than half of all kids receiving ABA therapy will recover. ABA does not make recovery possible for every child. Some children may improve greatly with ABA, some children may not improve at all, and some children may recover. As a parent, what is important is to start ABA as soon as possible and to run a quality program. Focus on progress, not recovery.
- I worry that my child hates his therapy and dislikes the therapist. He cries when she comes to the house, and he runs away from her. Should I be worried? I actually had this situation happen to me, where I started working with a little boy who just…didn’t…like…me. I would show up at the home, he would burst into tears. Let’s just say the parents weren’t thrilled to see their child react this way. Eventually we had a lightbulb moment and realized that the child was very sensory sensitive and reacted strongly to my perfume. It gave him migraines. So what was happening? He associated me with pain. If your child has a consistent negative reaction to therapy or to a particular therapist, that’s a problem. It is normal for your child to avoid therapy sometimes, or to occasionally appear upset when the therapist arrives. The key word there is occasionally. A consistent negative reaction could mean many things: the therapist isn’t properly paired with the child, the therapist has become aversive to the child, the child is struggling with transitioning into work-time, etc. Explain your concerns to the therapist, and together think of strategies to make the therapist more reinforcing.
- Im overwhelmed by all these treatment options. Should I research each one and read more books before I implement anything? Early intervention is key when it comes to Autism treatment. Throw away the concept of “wait and see". Time is not your friend. The sooner you begin intensive treatment the better it will be for your child. Yes, the vast array of treatments for Autism is dizzying. So start simple. Focus on one deficit at a time. If your child has a poor gait and weak fine motor skills, get them into OT. If your child refuses to play with peers and has no interest in toys, look into Floortime or Social Skills Groups. As you learn more about various treatments and what your local school district offers (or what insurance will cover) then you can begin considering other options. Its important to start with something, even if its just one therapy.
- What kind of expert (teacher, physician, psychologist) is the best source to tell me about my child? Doctors, pediatricians, developmental psychologists, nurses, teachers, behavior specialists….as a parent of a child with Autism you may find yourself in the middle of a revolving door of professionals. It’s important that you understand professionals are qualified in a certain area or domain. They may be experts in child development, behavior, or Autism, but who is the expert on your child? YOU. You are the one who knows your child the best, not a BCBA who assessed your child for 4 hours and then wrote up a report.
- My client completely ignores or is very aggressive with her siblings. I want to help the parents with this but Im not sure what to tell them. I discuss in my social skills post how to teach children with Autism to interact with toys or other people. It is very common to work with a child who will interact with, or be in close proximity to adults yet will cry, scream, or aggress if a child gets too close to them. Many parents feel especially hurt that their child won’t interact with his/her siblings. From the child’s perspective, their siblings are not special. Their siblings are just annoying, unpredictable, short people who happen to live with them. Social skills need to be explicitly taught, and part of your therapy sessions should include bringing the siblings together for structured interactions.
- I know Im supposed to provide parent education, but Im not sure how OR The parents don’t want my help/feedback. Parent education at its core is simply involving the parents in the therapeutic process. You want to include the parents as part of the treatment team, even if you have to convince them why this is important. Your goal with parent education is to inform, educate, and provide feedback. The parents should know what programs you are teaching, what reinforcers are effective, what strengths the child has, etc. You may come across a family that seems uninterested or apathetic about parent education. Your response to this will vary depending on where you work. If you work for a company, parent involvement is often required and parents resistant to feedback are dropped as clients. If you work for yourself, you need to decide how you want to handle an apathetic client. If you aren’t careful some families may start to view your services as glorified babysitting, not therapy. You need to clarify that you are a professional providing a service and you need parent involvement to be successful. If the family is consistently apathetic, you may have to stop providing services to that family.
- My client hates change. Should I accommodate that or should I intentionally change things so he can get used to it? Resistance to change and a rigidity of interests are characteristics of Autism. It is to be expected. As part of the therapy process, yes, you need to start exposing the child to a varied routine so they can learn to accommodate change. This should be done gradually and in increments. Its also important to use visual cues such as a picture schedule posted on the wall. You can change the pictures every so often to signify to the child that the routine will be different. Expect that the child may be agitated or confused by the change in routine, but over time and with consistency these reactions should minimize.
- What's a Certified ABA Therapist? You might have heard someone refer to themselves as a certified ABA Therapist and wondered what that meant. There is no nationally recognized certification for ABA therapists other than board certification. Board certification comes at 3 levels: BCABA for Bachelor Degree holders, BCBA for Master Degree holders, and BCBA-D for Doctorate Degree holders. When someone says they are certified in ABA this could mean almost anything. One person could hold an ABA certification due to taking graduate level coursework in Applied Behavior Analysis, but someone else could say they hold an ABA certification if they only attended a 2 day workshop on basic behavior theory. The only way to obtain nationally recognized certification in the field of ABA is to be board certified. For more information go to http://www.bacb.com.
- My client acts so much worse around his parents than he does with me. Why is that? This is a very common question. This doesn’t always occur for the reasons you may think. Its true that in some situations the parents may be inconsistent or lack follow-through on discipline. Beyond that, sometimes the child hasn’t generalized yet that they must listen to many adults and not just the therapist. For many children with Autism the parents are a safe haven. The parents serve as comforters, providers of food, love, hugs, kisses, and may be the only people the child feels fully comfortable with. Sometimes what looks like bad behavior can be a special parent-child bond. For example I have a 8 year old client whose mother routinely carries her daughter around the house, despite the daughters large size. This is a special activity between mother and child, and is one of the few times this child will accept affection from anyone. So the mother allows it. Sometimes what looks like bad behavior is really the parent allowing their child to relax and let loose in their safe haven.
- My supervisor is unavailable, unhelpful, or makes me feel stupid for asking questions. What should I do? I love answering questions like these, because I have been in that position. I have had great, bad, and indifferent supervisors. When I was a new therapist it made me feel very uncomfortable to tell a supervisor they weren’t doing a good job. So I understand how hard it is to have that awkward conversation. I suggest talking to your supervisor 1:1 about the issue and providing concrete examples about the areas you feel are lacking. Make “I” statements instead of “You” statements, such as “I feel unprepared when I’m given no background information about a child I am working with” instead of “You need to stop sending me out to see clients without giving me their intake file first”. Focus on what you want to see improve, and explain what you need to benefit from training. If you don’t feel comfortable asking your supervisor questions, venting after a really bad session, or making programming suggestions, then that’s a problem. No matter your experience level your supervisor should be open to your ideas. As a supervisor I can say I much prefer a supervisee who is full of questions, than a supervisee who feels they don’t need my help. There is no such thing as a stupid question, and you shouldn’t be made to feel that way.
- What do parents look for when hiring ABA therapists? What’s most important to them? I have helped many families interview and hire in home ABA therapists, and I do think there are a few things all families have in common when hiring a therapist:
- The family wants you to enjoy your job- Even if you have minimal experience or training, clear passion can make a great impression on a family
- The family wants you to show up when you say you will- Be on time for work, call if you are going to be late, and don’t end sessions early
- The family wants you to be competent- All families want to see that you know your stuff. They want to see that you are knowledgeable and have expertise, which is why they are hiring you in the first place
- The family wants you to see their child as a child first and a diagnosis second- Don’t view their child as a list of deficits and weaknesses, or a problem to be fixed
- The family wants you to involve them in therapy (yes, most families DO want parent education)- Explain what you are doing in a session, ask parents for approval before selecting new programs, explain behavior procedures you have found to be helpful
- The family wants you to be loving and kind- Parents love being around people who love their children