Monday, January 24, 2011

Autistic Kids Work Hard

Did you know that Autistic Kids are the hardest working kids on the planet? This isn't a documented fact but lets take a look at those pieces of the puzzle that we are supposed to be fitting together and see if we can't come up with a conclusion.

Early Intervention says that we need to test and diagnose Autism as early as two, earlier if symptoms are present. With a diagnosis of Autism, PDD-NOS (pervasive developmental disorder- not otherwise specified), Retts, and Aspergers (a Dx usually made after 6 years old) you also get recommendations for treatment. Although lets clarify here that MOST of the time when you get the diagnosis you also get the phrase, "we don't know what caused it and there isn't any known cure, but some therapies can help". We won't address the insane level of frustration that comes with that statement now, lets focus on the therapies. Ok, you get the diagnosis now what? Lets start with Speech Therapy, minimum 2 days per week for 1 hour per session. Occupational Therapy 1-2 times per week for 1 hour. Classroom setting instruction to prepare for preschool and learn socialization 2-3 times a week for 1 hour. And if you are really lucky, have the money and can find reputable instructors ABA (applied behavior analysis) is the way to go. The preferred treatment for ABA is 40 hours per week of intensive treatment in the home with 4-6 therapists. Floortime is also recommended but the hours required vary depending on the need of the child so we'll leave this out for now.

Total time recommended for 2-3 year old children diagnosed with Autism: 47 hours per week
speech (2) + OT (2) + Class (3) + ABA (40) = 47

Once the kids start school the time required from parents is less as much of the work the kids do is now outside the home. That doesn't mean our kids aren't working their tails off! Full inclusion, Special Education services, Special Programs, etc total 6.5 hours per day. It is still recommended during Elementary school to continue with Speech and OT but it's okay to cut back to one 1 hour session per week to target specific goals. Due to lack of time during the day ABA is cut back or eliminated completely, ideally the kids would receive some ABA instruction within the school but although that is the recommendation, it is rarely ever available within public school. During this age we see a lot of behaviors coming out, these kids are noticing that they aren't like every one else and they act out, loose focus and become disruptive. We now add in a Behavioral Psychologist to assist us with problem behaviors which we will visit 1-2 times per month for 1 hours sessions either one on one with the therapist or with the whole family. To address issues of anxiety, stress, ADHD medication may be necessary, medication can only be prescribed by a family doctor or psychiatrist (bonus points if you can find one who specializes with Autism!). Ideally a monthly visit to check progress and change meds is necessary. Now would be a great time to add in a Social Skills class! This age is a great time to introduce socialization, teach proper group manners and interaction. I won't lie Social Skills groups are extremely difficult to find but optimally a group would meet for 2 hours per week (either one 2 hour session or two 1 hour sessions). Social Skills teaches ASD kids the lessons that most kids pick up naturally by reading social cues. During this time, we as parents also take a look around at all the "typical" kids and what they are doing. Our kids are just as fun and just as bright and we want them to try soccer/basketball/baseball/karate/dance too! We'll either look for a special class or we'll sign our kids up with the typical kids and add 2-4 hours minimum to our already packed schedule. I want to add here that the "typical kids" are working hard too, sometimes playing multiple sports and taking classes for outside interests like music. I almost forgot! HOMEWORK at about 1 hour per day

Total time for a typical elementary school age child: 41 hours  30 minutes per week
school (32.5) + outside interests (4) + homework (5) = 41.5
Total time for an Autistic elementary school age child: 46 hours 15 minutes per week 
school (32.5) + outside interests (4) + Homework (5) + Speech (1) + OT (1) + Psychologist (.5) + Psychiatrist (.25) + Social Skills (2) =  46.25

I wanted to break out an additional opportunity that some Autistic kids get mid way though their Elementary School years. Most states have what is termed an Autism Waiver where if your child is deemed "Autistic enough" they have access to state funds for:
  • Respite Care
  • Environmental Accessibility Adaptations
  • Family Training
  • Service Coordination
  • Supported Employment
  • Residential Habilitation
  • Intensive Individual Support Services
  • Therapeutic Integration (after school)
This is a use it or loose it program people! Once you are approved for the waiver you have to jump in with both feet and get going or you'll get kicked out! What this means for our 7-9 year olds is that their Social Skills will be paid for (yes!) if you can find a group in session that takes the waiver as payment (no!). In the mean time while you are waiting for that magical group to start you have to use these services or you'll loose them! Usually you sign on with a group that offeres Waiver Services and they handle the paperwork and schedule for you. From the start they "highly recommend" Family Training for 2 hours every 3 weeks. At Family Training they tell you that your chances for the best success is to have a Therapeutic Integration specialist (or 2) come to work with your child 3-4 times per week minimum 2 hours per session. For these sessions they are strictly forbidden by the state to work on homework although some do anyway because if not when is it going to get done?

Total time for an Autistic elementary school age child with the Autism Waiver:  53 hours per week
school (32.5) + outside interests (4) + Homework (5) + Speech (1) + OT (1) + Psychologist (.5) + Psychiatrist (.25) + Social Skills (2) + Family training (.6667) + Therapeutic Integration low end (6) =  52.9167

THESE ARE SOME DAMN HARD WORKING KIDS PEOPLE!!!!! Some adults don't even put in 53 hard hours per week! I wanted to write this for you all not because I'm complaining but because I don't think we take enough time to sit down and do the math. The news reports that we are over scheduling our "typical" kids and our reaction is to cut back on sports, piano, gymnastics, etc. But what do you do when the doctors and experts recommend these therapies as "must have" for the success of your child? Do you run your child and yourself ragged in hopes of giving them the best shot at normalcy? Do you cut back and take the chance that all will work out in the end? What do you say to the specialist who accuses you of not meeting the needs of your special needs child and who "strongly suggests" that you do more, pay more, dance more? Can we cut back? I don't know but I do know that this "normal" for Autism families often goes un-noticed and un-rewarded it shouldn't be. We are telling ourselves and our kids that when you work hard, you get more work!  ASD kids don't get paid, they don't get rewards and bonus' they get a shot at "normal" whatever that means. We loose motivation with them, we loose motivation ourselves and it's a tough thing to get back. I want to impart words of wisdom but I have none at this time. Stay tuned.


  1. I am so glad you are writing this blog.

  2. I'm with Terra..

    I am tempted to send this entry to my friends and family to explain why they never see us and why we are always so exhausted.

    With Grant being 3 and the lovely time we spend together being not so "productive" in the eyes of therapists and teachers, I'm now facing the hard decision of whether or not to put him in practically all day every day therapy.. and feel like I'm losing my three yr old.. or not giving him every advantage and then feeling guilty that I'm not doing all I can for him or what if he doesn't progress "enough" (whatever that means) because I wanted to actually spend some time with this kid I wanted so bad?

  3. It definitely feels like you have to make a choice between spending time with your kid or getting them the help they need. There must be a balance somewhere but I've yet to find it. Some days it feels like we spend 0 time together and only do therapy then others it seems like we do nothing but hang out and feel unproductive. ASD moms and dads have to learn fast to make every second count whether it's a snuggle before bed or an afternoon at the pool. Is there ever a time when its okay to just do nothing?

  4. Darn I hope so cause we are guilty of it..

  5. Terra sent this blog to me, because my almost-4-year-old is autistic. This entry SO resonated with me. He's in school/therapy 5 days a week, 4 hours a day, and we're bumping him up to 6 hours a day soon. I get excited for snow days because I miss him! I know I am so lucky to have found a wonderful preschool and therapy program that he also loves, but I feel sad that he's (ok, I am) missing out on why I quit work to be a SAHM in the first place...

  6. Patricia- I'm so glad Terra told you about my crazy rantings! So far this has been my favorite post even with all the typos :) Autistic 4 is a hard year, it's a lot of transitions getting closer to Kindergarten and kind of the end of "early intervention" where there is a press to get a lot accomplished. It so hard to miss your little guy but its so important that you found a good program and you like and he likes. Still it sucks that the cost of that opportunity for him comes at the price of time with you. Take what little time you have anywhere you can squeeze it in and make the absolute most of it. Let the house go to crap, cook out of boxes, mom-stalk him while he's sleeping, hold him on your lap in waiting rooms (oops! there's no extra room, cookie monster and dora took the last 2 seats!), whatever you want/need to do to keep your connection. Hang in there and keep me posted! HUGS!