Tuesday, April 2

autism awareness

today is world autism awareness day.

and, like my reaction to most everything, i am cynical about it.

because here is the thing. i don't think autism needs an "awareness" day or month. i think that most people are plenty aware of autism. with the latest statistics estimating that 1 in 50 school-aged children are diagnosed with something on the autism spectrum, it's hard to not be aware. i would bet a lot of money that anyone who reads this post knows someone who has autism (besides hiba. although, that would make it an easy bet for me). people are aware. 

but i don't think that people are informed. and i do think there is a big difference. you can be "aware" that 1 in 50 school aged kids have a diagnosis on the spectrum. you can be "aware" that autism affects a lot of people. but that doesn't mean that you are "informed" about what that 1 in 50 statistic means in real life or exactly how autism affects so many people.

so what i want - this month and every month to come - is for people to be more informed about autism. i want people to realize that as the diagnostic criteria becomes more broad, autism has begun to look very different. i want kids to be informed at an early age about all kinds of special needs, especially the ones that look "normal" a lot of the time. i want teachers to be more informed about teaching strategies for kids on the spectrum. i want people to understand that autism no longer fits in a box and someone doesn't have to have every symptom to fit the diagnosis.

hiba is very high functioning, as far as the diagnosis of autism goes. and for that, i truly am thankful. really, i am. but, i feel like for us, and for a lot of families with children who have aspergers or high functioning autism, we are stuck in the middle. as the diagnostic critera increases, as the medical and therapy community begin to realize that a large amount of the population have brains that process information and function differently than the neurotypical community, people like hiba become stuck. they fit the diagonisis, but don't qualify for treatments. they have the symptoms, they have the issues, but not profoundly enough to qualify as needing a lot of intervention. the criteria for diagnosis has gotten broader, but the criteria for the therapies and intervention has not. 

hiba has sensory issues. this has been "proven" by tests and assessments. but she only qualified for six OT sessions, instead of weekly or bi-weekly sessions. those sessions have been helpful and i have learned a lot. we've set some things up at home to help hiba get the sensory input that she needs. but - she doesn't qualify to get that therapy during the day, at school, on a regular basis, when it would not only be easier for us, but would also help to keep her leveled out and calmer all around. instead, our family was given information about sensory diets, given ideas about what will benefit hiba, and good-luck pat on the back.

hiba has transitional issues. this has been "proven" by tests and assessments. but, she is cognitively smart enough that she does not need to be in a self-contained classroom. in fact, she would be bored out of her mind. so she is in a normal class. her teachers are aware of her issues and help as much as possible, trying to remember to let her know in advance if the schedule is changing. even on stressful days at school, she usually makes it through the day with minimal visible stress or meltdowns. so they don't consistently use a schedule with her. and she survives and makes it through the day, and even does really well at school most days. but then she comes home and the smallest little thing turns into a big deal and a meltdown because she's already taken in all the chaos she can handle for the day.

hiba has impulse issues, i think that are more than typical for someone her age. this has been "proven" by tests and assessments. but she doesn't qualify for behavioral therapy on a regular basis. we can go see dr. liz as needed, but she doesn't "need" it every week or every day or whatever, so i just have to sit around and wait until things are getting really hard, get an appointment, get a few ideas, and then back home we go, with a list of ideas and strategies, and a good-luck pat on the back.

hiba has communication issues. this has been "proven" by tests and assessments. she has a very large vocabulary, but struggles with reciprocal conversations. she can hear and process verbal directions most of the time, but she has a difficult time with this when she is stressed out. she makes eye contact and isn't afraid of looking at people, but i've noticed more and more lately about how she doesn't do this when she is stressed. jokes make her nervous if she doesn't get them. she hates sarcasm because it makes her feel like she doesn't understand what is happening. but, she doesn't qualify for speech therapy. she is too young for social groups. and she is too high functioning for one-on-on speech therapy, even in a classroom setting. so instead of therapy, we are given ideas and things to read, we are given strategies on how to help her out, and a good-luck pat on the back.

lately, i have felt that people look at hiba, they look at us, and they see that she is high functioning. teachers, therapists, friends. they all see the high functioning side every day. they see how she is able to learn quickly. they see how she is able to cope with her anxiety some of the time. they see how she is able to play with friends. they see how she is able to talk. they see how she is able to function at a normal level most of the time.

and so they don't see autism.

they are aware of it, either because it's on the sheet of paper or because we have told them. but they are not informed about what that really means in our daily lives. they don't see her autism. 

but i do. 

i really am thankful for hiba. i really am thankful for all she can do, and all she doesn't do on a regular basis. but what i have learned this year is that autism is real, autism is here to stay, autism looks very different than it did 20 years ago, and not all of the treatment ideas and reactions, both from the general public and the medical/therapeutic community, have caught up with the diagnostic criteria. i've learned that people are aware that autism is around and prevalent, but are not informed about what it is or is not.

so on this autism awareness day, i am thankful that people are aware. i am. but i hope that if you change your profile picture, if you wear a blue t-shirt, if you click "like" on all of the pictures - don't just be aware. become informed. become informed about what autism looks like - either by reading about it or simply asking parents or individuals with autism. become informed about what it means in everyday life. become informed about how educational approaches need to change and come alongside of parents like me to figure out how to make that change. become informed about the difficulties that people with high functioning autism face, as well as the difficulties their parents face. become informed about what autism really means today.

awareness is a good first step. as a mom of a child with autism, i genuinely thank you for being aware. but now that you are aware, move forward. become informed. and then act on that information. because that is how change and help is going to come.

*Disclaimer: this is me and my thoughts. these may not be your thoughts. i am genuinely thankful for all of the attention that autism gets this month. i think that organizations like autism speaks do a lot of good work and are great advocacy organizations and great at raising awareness. if you love autism awareness month, that is great. i am glad you do. if you are wearing blue today, thank you.  if you are affected by autism and you feel differently than i do, that is just fine. i am not trying to downplay your struggles or downplay how far people have come in understanding autism. i am in no way saying that autism awareness is a bad thing, just that it shouldn't be the end game. i also want to say again that i love hiba and would not have her any other way. but that doesn't mean it's not hard day to day, and it doesn't mean that i can't be annoyed by the hard things and the way the system makes things harder. but that may be another post for another day. anyway. end rant. 

1 comment:

K White said...

I have not read the entire blog yet, but I read enough to appreciate your stance and realize my own errors in being aware and being informed. Just the first few lines lit a light of conviction in me to rethink my own writing. It's funny because I started an awareness page yesterday, but I stopped because I was not quite sure of what I wanted to present. Thank God Ms. Kathy posted this to FB. An unexpected blessing!!! Thank you for sharing!