The way I see it, early detection is the ultimate Pandora's Box for people on the spectrum. Those of us who are a bit more aged certainly remember the nearly unimaginable loneliness of living without a diagnosis, I myself was fortunate enough to be diagnosed at age 14, but some older ones did not obtain a diagnosis until adulthood, and many autistic adults today may be living without an official diagnosis.
It is not just a deeply crushing personal crisis, wondering why you are different and what makes certain aspects of life so painful compared to how others seem to experience it, but it is one that denies people the chance to seek assistance, accommodations, medical help, and, perhaps the most overlooked, a sense of belonging and peace of mind that comes with knowing. I now cannot comprehend not knowing I am autistic, the thought of being stripped of this knowledge makes me quake in the knees.
So some aspects of early intervention I look upon with envy. I think about all that I could have accomplished and how far I could have progressed, if only they had known the reason for my difficulties in school and socializing. How my deficiencies in mathematics could have been addressed, proper motivation given, educated in a language that was not alien to me. I can't help but feel elated knowing that my own future children, should they be autistic like their mum, end up with so much more potential and support than I could have ever dreamed of.
The dark side to early detection though, strikes me each time a story about it is announced. Under that hope for making the world of people on the spectrum seem a brighter place, there lies a dark glimmering hint of unscrupulous, anti-neurodiverse applications. The earlier the detection gets, the closer we seem to get to the Holy Grail of organizations like Autism Speaks: A prenatal test for autism.
Let it be known that I am pro-choice. If a woman decided she was not up to the task of raising a child with autism, I would not object if she opted to choose an abortion.
But I still shudder at the possibility of a prenatal test for autism, because I am certain it would spell doom for neurodiversity. If a prenatal test were developed, and entered the standard battery of tests run on foetuses, it's quite possible that the standard response to a positive autism detection would be abortion. With autism being so widely misunderstood, and the mainstream disablist view seeing autism as a tragedy that can only be dealt with through years of ABA and pain for the parents, teachers and doctors, not a thought would be given to the potential for a thriving, healthy existence a child with autism could possess.
It is not because I am against abortion. I am against the disablist notion that it is more 'merciful' to abort children with disabilities, rather than letting them 'suffer' through life. A lot of lip service is given to what a financial burden disabled children are to their parents. Very little is mentioned of what we as a society could do in the form of how we spend our tax dollars to ease this burden. In a society where all contribute to a better quality of life for all, disablist attitudes will no longer prevail out of a love for money more than quality of life for the vulnerable.
My other apprehension about early detection and intervention lies in the fear that too much emphasis will be placed on making the child "pass" as neurotypical as often as possible, without a regard to whether that is best for them emotionally or psychologically. I also worry that early detection may serve as a justification to isolate children on the spectrum from their neurotypical peers. Nothing worse can be done for both parties than to separate them. Neurotypical children who are not exposed to children with disabilities at a young age grow up to be adults who fear and pity people with disabilities, not understanding them and seeing them as less than human. If they learn from an early age though, that classmate Suzanne is different, not less, because she's autistic, or has ADD, or is blind, or a wheelchair user, their whole perception of what it means to be normal and worthy of respect and friendship will be permanently offered.
That is one of the advantages of early detection, it will give children a sense of pride in being themselves early on, when applied scrupulously and properly. With the right minds and the right intentions, you don't have to make sure a child "passes". You can ensure however, that she will thrive, that something will capture her heart and her passion will lead her on a great path, that difference is celebrated rather than talked about in hushed tones.
It's up to us. Early detection will not go away. The science has great power to change our lives, and our children's lives. If you are autistic, or love and know someone with autism, it is your best interest to see to it that it results not in our demise, but a new flowering of neurodiversity that will bridge us all to the rainbow connection.
Hi! I just found this post and it really spoke to me. I was diagnosed at age 4 and went through early intervention (shadow tutors, facilitated play-dates, OT, PT, and years of social skills training) from pre-kindergarten to fifth grade. I think in a lot of ways it really helped me, especially with learning how to reach out to other people socially. But I definitely got my share of the "normalization" agenda, and I feel like some of my intervention was based on passing. For example, parents, tutors and teachers told me never to stim, and I've had to re-learn how to stim in order to cope with the stress of college.
ReplyDeleteI'm working with autistic kids now and I have mixed feelings about what we're teaching them. You summed this up really well.
Thank you, Zoe! I'm glad it spoke to you, I'm glad to know I'm not alone in my concerns.
ReplyDeleteGood post! Like Zoe (and I think I may have told you this before ... not sure), I was also diagnosed very young (5) and found that it helped me --- particularly, I was given special training on the things that I found it really hard to do, like switching from one task to another. I also seem to have entirely avoided the normalization training, which I realize is unusual and might be due to my age; I was diagnosed, and going through school, before the recent-ish surge in "autism awareness" and thus I think the interventions I got were more geared toward things I actually seemed to need help on, rather than being "OMG she's autistic, must get her to make eye contact!!!1"
ReplyDeleteI also totally share your ambivalence about a possible prenatal test --- I'm also pro-choice, and also keen on women having as much information as possible to make the best decisions for them, but at the same time I know the only reason so many NT women would abort if they knew they were going to have an autistic child is because the media keep telling them autism is some horrible thing, worse than cancer or whatever.
I don't think we would totally die out --- many autistic women might find it easier to raise a child like themselves than otherwise. But autism would probably go back to being a very rare phenotype.
When I was a child, we moved when I was going into 2nd grade. The new school had a volunteer who did a lot of things around the school who was disabled (I believe he passed last year, and was much mourned by the community). I think he had cerebral palsy.
ReplyDeleteWhile I learned quickly that I had to pay a lot of attention to understand what Erik was saying and really listen, I can only think that I grew into a better person because of that early positive experience with someone who I percieved initially as very different. In time, I think I eventually didn't see him as much different from other class aides we saw occasionally. I can only hope that other children saw him that way.
I think you're absolutely right, that making sure people who are AB and people with disabilities and neurodiversity really have to have exposure to each other, or else we end up in a world that's even more broken.
~Kali
This post is wonderfully written and should be spread as widely as possible. I am also pro-choice, and would support any woman in her decision to abort any pregnancy... but the idea of a prenatal test for autism/ASD's terrifies me. I too fear that neurodiversity would go down the drain, and that would do no good for anyone. Neurodiversity is so important, and I sincerely hope that if a prenatal test becomes possible, neurotypical families do not automatically assume that a positive autism result means an abortion.
ReplyDeleteThank you for writing such a lovely blog - this is my first comment, but I've often read your writings and very much enjoy them!
Thank you very much, Annesley. Your praise is very much appreciated, I'm humbled by your readership.
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