Living with Autism: A Parent's Perspective

Report card time in our house.

This is always looked at with a bit of a jaundiced eye by some autistic parents because not every student is equal and not every teacher looks at them appropriately.

Last year we had trouble with our son’s teacher.  He was diagnosed autistic and had a full time TA as well as a well founded special education plan based on his abilities and needs that would bring him fairly close to inline with his peers.  he was basically nonverbal and yet he was based as needs improvement on communication and while he was capable of reading all of the “sight words” for the next grade level up but she didn’t even bother testing him or consider it worth mentioning to his next years teacher at the end of year conference (fortunately the new teacher had sharp eyes and questioned her on it)

Now I have personal knowledge of how much damage a poor teacher can cause. In grade nine my English teacher chose to refuse to allow me to do a book report on Gene Stratton Porter’s “Freckles” a 19th Century novel calling it to infantile while instead approving Franklin W Dixon’s “Hardy Boys” as a more acceptable level. Now I can only assume he did not bother reading the book (or was unable too as it was written in “Old English”)

This is the same teacher who as my school’s guidance counsellor blocked my original intended course selection, damaging my high school transcript with low end courses (instead of the higher “advanced” courses i had selected) this ended up overturned the next year on almost all courses and the final course was redone as an extra course on my extra year to great success. However it took an extra year of high school to correct the damage he had done to my course selection and I was never able to recover as I lost my scholarship eligibility due to a 4 year high school career. So yes a poor teacher can seriously damage a student’s ability to achieve to the best of their potential.

This year our son’s teacher looked at his SEP as well as his progress and marked him accordingly, marking his progress as it reflected on his SEP and those courses and behaviours that were not covered were marked as applicable at the time.

We were initially concerned about this teacher when we first realized who his first  year teacher would be, however we have been pleasantly shocked by the results that we were given and feel that based on where he started and what he has to deal with on a daily basis that he is being marked fairly.

These reports are kept in his permanent file and so they affect the judgement of every subsequent teacher and TA or support worker who has access to his file in preparation for dealing with him for the year. To have him appropriately marked and his progress accurately measured actually does matter because it gives the next years instructors and TA’s an accurate measure of his ability instead of falsely holding down his progress simply because the teacher may not be interested in understanding his progress or his abilities and limitations.

So to my son’s teacher thank  you for making the effort to actually realize what his limitations are, what his progress is and what his SEP sets as his goals and using this information to accurately measure his progress for the school year so far.

Our son has always had one thing going for him. No matter how much his behaviours got in the way of anything else, come time for AIT testing he was without fail chosen for the testing. The reason was simple, he thrives on the AIT testing environment and so he behaves at the best of his abilities and makes his trainers look the best they can possibly be.

Now last year he entered kindergarten and so the end of ABA therapy. And for the ABA center it was the end of using our son for their testing. But, there was an unseen detail. Because of our son’s ability in testing when the AIT program did their OTJ training our son was chosen as one of the subject’s because of his history with the testing. This was again repeated later in the year, so in kindergarten he had two rounds of AIT training courses.

This year we were called again and asked if he could participate again (we really enjoy him participating as he functions well during it) and again today when the head trainer called me she asked if he could be used in the second training as well.

The advantage that his participation in this course provides is specific ABA based training used in relation to school based activities. In school his TA’s are both ABA trained however full ABA teaching is considered to disruptive to the class and so while he gets elements of it, he does not get the full benefit. During the AIT training he is still working on the school  programs but it is for this period being done using full ABA methods and his responses are significantly greater.

We willingly allow him to participate in this program because he functions so well and benefits so much from it. however one question I often ask myself. Which is more disruptive Using ABA in the classroom or having his behaviours in the classroom.

His behaviours are not completely removed by ABA but they are dramatically reduced.  Sometimes I quietly question (in my head) whether it would be more productive  to use the ABA in the classroom, both for him and for his classmates.

His classmates are another thing. We are fortunate that he is only in Grade 1 at the moment. But I am so pleasantly surprised by the friendly way he is treated by his classmates (and others not in his class) even though he is non verbal and generally unresponsive to their attention. But everyday when I pick him up someone is always waving and saying hi to him or someone is waiting for him to play with him even though he generally accepts but also ignores their presence.

Sometimes it makes you feel that regardless of what commenting you read on news pages when it comes to some adults opinions of special needs students and integration, apparently bigotry and hatred are not genetic because almost all the kids i have seen in my child’s school have missed that “message” and are extremely well behaved not only with my child but with most other children there as well from what I have seen.

We want answers. Not platitudes, not excuses and most certainly not condescension because while we may not understand science as well as the researchers, we understand autism far better then the researchers. We understand autism so well because we live with it on a daily basis. So if you tell us certain things are not relevant, we can say yes it is, we say this because we can point to our children and say look, here, this one and that one also have to deal with these specific issues. Changing the criteria to include more and more different groups does muddy the waters, and while I don’t deny the right of those newly included, it does make the research more difficult because it minimizes issues, like cognitive difficulties that used to affect a large portion of the autistic group and now in the upcoming version of the DSM it does not even appear to be recognized as part of the autistic issues.

We need to perhaps look at it slightly differently. 20 years ago autism was recognized by the rocking and almost total exclusion of any social type of activity, the exception being for some classed as savants or extremely high functioning (Rainman and Einstein types). Now my son is towards the more extreme range though he could functions on a physical and interaction level the way savants are portrayed, though we have nothing by which to measure his potential to fit into the savant category at this point. Today autistics are more commonly thought of as those like Ari Ne’eman  or on the more aggressive side with regular tantrums or meltdowns. Those with cognitive difficulties and true savants are an ignored sections of the autism spectrum. The result in this is that searching for various causes of autism are focusing more on those in the newer categories (as are treatments and care options) with little or no research and treatment being done on the other end of the spectrum.

As parent’s we have all become activists. We are constantly working within the school system (whether cooperatively or antagonistically) to get the best care and education possible for our children. This activism is carried over into the research area, where many parents are calling for specific types of research to look into common theories (whether valid or invalid) to come up with some answers. The issue becomes that at 1 in 110 children born presently being expected to develop some level of autism and the appearing to be rising regularly more and more parents are getting involved and the more that get involved and the more that start looking for answers our requests are going to get difficult to ignore.

Researchers need to involve parents in the research process because as the stakeholders of all autism research we are the ones who need to be convinced that any given results of any given research is the best possible answer. Without working with parents you will find that the noise calling for more and better testing (and calling for certain types of testing) will not go away but just get constantly louder.

I know researchers may not be comfortable involving those who are not scientists in the research but this is the best way to get the message and the resultant answers to those who are most concerned with the research.