Autism Can Be Identified Earlier, Which Means?

A couple of days ago, I posted this article (http://www.healthcanal.com/genetics-birth-defects/48756-autism-signs-can-be-identified-earlier-than-formerly-thought-study-suggests.html) on my Facebook wall and it has been bugging me ever since. We can identify autism early and then what?  Throw a bunch of services at a 2-year-old child and hope something sticks?  It seems like prioritization is necessary, but no one wants to prioritize.

If you go onto the CDC website (http://www.cdc.gov/ncbddd/autism/treatment.html), it states early intervention is important and references one article about preschool education (technically early intervention is before preschool) and another article with an educational committee’s recommendation. The committee recommendation document is over 300 pages long (http://www.nap.edu/catalog.php?record_id=10017) and the upshot is in this paragraph taken from the executive summary:

The committee recommends that educational services begin as soon as a child is suspected of having an autistic spectrum disorder. Those services should include a minimum of 25 hours a week, 12 months a year, in which the child is engaged in systematically planned, and developmentally appropriate educational activity toward identified objectives. What constitutes these hours, however, will vary according to a child’s chronological age, developmental level, specific strengths and weaknesses, and family needs.

So, do a bunch of therapy, throw the kitchen sink at a kid as young as possible, but we don’t really know which kids will respond and how well they will respond and what therapy is appropriate? And then there is line in the report:

Personnel preparation remains one of the weakest elements of effective programming for children with autistic spectrum disorders and their families.

Great, so throw a bunch of therapy at kids as young as possible, but chances are a good portion of your team will not be appropriately trained. It is enough to make a new autism parent want to cry.

My daughter Beth, who is now almost 6, was about 2.75 when she was diagnosed, and she had some OT (Occupational Therapy) and psychological support from 2.75 to 3, then started intensive therapy (ABA[Applied Behavioral Analysis], speech therapy, OT, and PT [Physical Therapy]) at age 3. Things did not go well in her early intervention and preschool program, so it is really hard to imagine that starting intensive therapy at age 2 with the same program would have made a world of difference. I will admit that from 2-2.5 she was still rather calm and had fewer stims and preoccupations. Maybe that is why it is best to start early, because you can teach more in that period and there will be a strong foundation for further work.  Given that consideration and what I know now about my child’s challenges, I would say that the following services at home would have been most helpful to Beth from age 2-3: 1. Play therapy like Floortime or a parent-oriented behavioral approach like the Denver Model, 2. A focus on body movement and motor planning, with an OT very knowledgable in treatment for dyspraxia, and 3. Language work (receptive and verbal) with a speech therapist using a Floortime approach.  But that is looking back and that is just what I think is right for my kid and our family. I have no idea what I would suggest to another parent who has a newly diagnosed 2-year-old child with autism. 

It would be great to have recommendations from an Autism Therapy Prioritization Committee* specifically geared towards 2-3 year olds, where they describe particular profiles of kids at that age who have autism and what therapies would most likely help. It would also be helpful if a prioritization committee would bite the bullet and chose which ABA programs and which developmental charts are best for 2-3 year olds diagnosed with autism. In addition, it would help to know which play-based models and certifications are recommended, so that parents can ask about those certifications when they are choosing therapists (many speech, OT, and ABA therapist hold these additional certifications). I doubt we will see this type of advice any time soon. And in the meantime, parents with young children who have been diagnosed with autism have the overwhelming task of deciding what therapies to do and which therapists to hire (or fight for through the school system). My heart aches for these parents and I believe the experts have a responsibility to prioritize and further clarify early intervention recommendations.

_________________________________

*My name for my imaginary committee

About these ads

12 thoughts on “Autism Can Be Identified Earlier, Which Means?

  1. L Hernandez says:

    I enjoy your blog and I get what you are saying here, but my concern would be that many “experts” have recommended things that were not good for my child. We already have so many making recommendations based on what they think they know about Autistics, but I would prefer that they get to know my child as an individual and make recommendations from there. There are no clear-cut answers. Each child is so different. Even in our own family, my two boys on the spectrum have needed different things.

    • grahamta says:

      True, but the thing is, saying do lots of hours and it should be ABA, but not saying that for 2-3 year olds it should be a lot of play, engagement, etc and here is a reasonable checklist is really worrisome to me. Better someone try to take a stab at it and provide a reasonable recommendation than none at all. I have a check list in front of me VB-Mapp that looks a little ridiculous for 0-18 as they label it. The other thing that bothers me is the report did say that a subgroup has big problems with motor planning (like my kid) but then left it out of the recommendations basically. That is what I meant by identifying some main subgroups and calling attention to that…so that the parents know, hey some of the kids have that issue so they may need more of X intervention. I know it is tough though and it will be individualized, but to say in report, hey there is a subgroup and it is a problem and then just give everyone the same recommendation is ridiculous ;-)

    • grahamta says:

      Yes, but the experts are who parents listen to when a diagnosis comes, so my main point was at least they can inform people about how to incorporate the other fields and Floortime/RDI, etc into the picture, recommend play-based approach for young children, etc. They are trying to stuff everyone into the same box, while at the same time acknowledging a wide spectrum, lowering the age we should start treatment, admitting there is a subgroup with motor issues and giving the same recommendation for that group. I agree, it is a mess, and no solution will be perfect, but I am just looking for them to clarify the “how” of a “comprehensive plan.”

      • L Hernandez says:

        Well, that is certainly true. If there was at least a list of “X issue” can be addressed with “X therapy” I think that would help families, especially as they are just starting out.

      • grahamta says:

        Yeah, it is really generic on the CDC site for example. ABA, and oh yeah, here is some other stuff (at least that is how it read to me).

  2. judy says:

    No one wanted to hear about my concerns when my daughter was less than one year. She was an average milestone reacher. Nursed well. Started talking very early and had an unusual vocabulary before one year old. She also had a strange asymetrical crawling pattern and only crawled for two months before she walked at ten months. She used ro sit on the floor and spin in circles and had no interest in toys in general, only a very select few. She would avoid eye contact with her father and sometimes with me but less so. She would never sleep without touching me. She would scream if I left a room until I came back or she finally cried herself to sleep. The only way my husband could get her to calm down a few times would be to put her in front of the fan on high, somehow it soothed her. She had to be swaddled tighter than any baby I’ve ever heard of and up until she was five months old. She had an anxious look in her eyes so often ot broke my heart not knowing what was in her mind. All of these are early signs of autism. No one listened. When her speech dissapeared at 14 months, no one listened, because a baby that young wasn’t supposed to have a vocabulary of over twenty words and several phrases anyway. I insisted on referals because I suspected sensory processing issues, and in the back of my mind and heart I thought it was autism as well. If the professionals had taken my concerns seriously instead of insisting she was fine since she wasn’t technically “delayed”, and started treating her as if she had autism, I don’t think she would have gone nine months without really talking at all. She is where she is because I implemented myself strategies as best as I could from what I could research. There are many who would not diagnose her now, but if I had done nothing and believed all of them, she might have slipped so far away that we could have had years of therapy trying to get her back. Her world now is very close to ours and they intersect frequently. I didn’t wait on them, because her signs were too many for me to ignore and our family early intervention helped beyond measure. Not all kids show as many signs as early, but every one of them deserves to have their individual needs carefully analyzed and measure put in place to help them whether they are technically “delayed” or not. So many kids critical windows of prime connection are missed because professionals are to busy just looling for delays.

    • grahamta says:

      agreed! Well, mine hit the milestones, spoke early in some phrases, same crawling issues, speech sort of stopped progressing though. Same story. There is a subset out there but it is missed by the doctors often. If they have the number of words at a age level they say it is prob okay. That is why I feel it is important to identify subgroups, suggest what may be needed for one group than the other. Individualized therapy is needed but we first have to know what we are dealing with. The dyspraxia was totally misundersood and we should have hit motor planning work very hard in the beginning. Again, this is another subgroup that has been identified, but is never highlighted in main recommendations.

      • judy says:

        Whole heartedly agree!
        Dyspraxia and sensory issues should be immediately addressed. There is so much proof that when these systems are given what the body needs the brain becomes more organized and other things like speech, eye contact, and joint attention often naturally stregthen as a result. Our OT has focused intensly on my daughter’s unintegrates reflexes which are asscociated with every one of her challanges. When I stay on top of her reflex protocols, I see my little girl so much more, she still has challenges and quirks but they don’t dominate her and then in turn us. When I get sick or exhausted and fall away from doing her protocols regularly, her body and brain get sooo disoganized. Her repetive patterns take over, lining things up anxiously instead of playing, running back and forth through the house over and over and over, stimming like crazy, avoiding eye contact and touch, chewing on her hands and biting everything, and frequent meltdowns. Her rigid thinking becomes practically impenitrable. It becomes so much harder for her to speak.

        I can only imagine what even earlier OT for her and your daughter could have meant for them. I haven’t done as much research on dyspraxia as you, but I wouldn’t be surprised at all to learn that it affects far more than just motor control, but that many areas of the brain are inhibted as well, speech, language processing, sensory processing. So many systems can be compromised by one system not working well. And so much time is being lost for our kids because these are considered side issues. You can put a kid in speech therapy all day, but if they are excessively aggitated because of a sensory issue they are not going to progress. I’m so grateful for our OT, we would still be so lost if it weren’t for her. But like you, a lot of my daughters progress has been me watching and anlyzing and researching and experimenting. Trying to use her strengths and interests to work with her weaknesses.

        I love your blog and I admire you as a person and a mom!

  3. grahamta says:

    I guess my only drive to write the article is everyone is pushing ABA, but within the ABA programs there are significant pluses and minuses. So at least other fields and how they can work with the ABA therapists should be addressed. And at a young age, I would think they might have different recommendation since the focus should be play (they should not put them at the table at 2 and many of the goals can easily be morphed into Floortime-like goals at that age). Definitely you have to figure out a way to calm the kids enough to work. It is a huge problem. I am glad that OT worked out for you. Yes, there is dyspraxia of speech too…it is present in her fine/gross motor as well. To boil it down, Beth’s main prob was with initiation on all fronts and she had to do it as much on her own to really be able to move and speak, but then the frustration would set in. So that is where the rewards and break times came in. Honestly I think all fields have contributed to improvements in Beth, but her program was uncoordinated and the ABA portion was just drills with errorless learning (giving her the answers did not help with initiation) and everyone was pushing her past the point of frustration, which didn’t yield results. Beth’s sensory issues went down when she got more sleep and as she matured. I tried sensory integration with an OT and it resulted in aggression that was at its worst. They pushed her to do things she was not ready for and unfortunately that has been my general experience with OT. No matter what the team member, they need to have a solid understanding of development, and not in just their area. It think that was the downfall of it all. But now we are on a great track. Every field I am using is working in our favor. I am doing most of it still, but I still learned from all the therapists I have worked with and we have a great speech and music therapist who treat me as a true team member.

    • judy says:

      Yes, I feel the same way about ABA. I was happy that it helped Kit accept that other adults could work with her without me in the picture. And it helped in her being comfortable being left with other adults. But we took her out after a short time because I really wanted her to learn to play, she was barely two after all! And like you mentioned it was basically just drills. I didn’t know that the stuff I do with her actually fits a combo model of Floortime and ABA until I had researched them more in depth. And it works much better for her. And to me it felt like common sense. I wish there was a more combo model offered here. It would be nice to feel like I had a little more backup. :/

      I’m glad you wrote this and hope more and more parents start demanding more individualized and play approached therapy so that it becomes expected!

  4. Autism Care says:

    Every child with autism has different needs and therefore each programs should be customized with different strategies and interventions.

  5. grahamta says:

    Agree..customize. But the powers that be have just said “ABA all the way” with no mention of the differences among ABA programs, ABA best practices, how it should integrate with other fields, if your child is in the significant motor planning deficit group then they should get more OT/PT to help tackle that problem, how play should be incorporated (especially 2-3…it should be a lot of play in every therapy). That is where I was going. Scary!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s