Is Autism a Disease or a Disorder? What Do We Do?
Many of us who have been supporting persons with autism don’t think it is a ‘disease’ we can cure. It is a ‘disorder’ that is adversely affected by things that can be cured: such as food allergies with a gfcf diet or hypersensitive hearing with a hearing aid that blocks most noise or acceptable strategies to deal with sensory overload such as using an exercise machine instead of flapping and spinning. Many of these ‘symptoms’ of underlying disorders/diseases can be treated and cured. Certainly if we can cure underlying illnesses it will be easier to teach needed communication and social skills to those who truly have Autism Spectrum Disorder.
If you couldn’t communicate what you needed or wanted you would become very frustrated too. Maybe you might not even be able to figure out what the need is to start with because you are not understanding what is happening in the world around you, if you are even noticing it. Eventually you will communicate something, only it may not be in a very acceptable manner, thus a misbehavior! OOPs, that was a long way to describe some persons with autism!
Maybe it does not take ‘rocket science’ but we might have to be very creative in our efforts to find ways to help manage the disorder.
Often it takes many years of intensive therapy and we have found several effective ways to do that. However, the cost is often very prohibitive; one that often only the wealthy can afford. Also therapies may not be “one size fits all” so 1 year of 1 specific therapy may not be what is needed for all on the spectrum.
We do need trained therapists for sure, but they also need to be able to think outside the box too and have other training/knowledge/experience that will assist them in developing a program that meets the needs of this little person and their family. There is an assumption here on my part that we are providing therapy to a young child while teaching & supporting parents/caregivers the skills they need to deal 24/7! This is called EARLY INTERVENTION. So early in fact that it is done in the home because the child is not going to school yet. If we do this right, many or maybe most will not need intensive 1 to 1 support in school (another story).
We know that autism is a disorder and we were smart to call it Autism Spectrum Disorder. The ‘spectrum’ part tells us “one size does not fit all”. We need to identify as early as possible when a team of specialists can assist in planning an individualized program plan to teach children and families how to treat what may need to be treated and to learn skills to bring order to the disorder. The greatest need will always be to provide a way to enable effective communication, which is a two way exchange remember, and then to teach socially acceptable behaviors/strategies. Now the person with autism will be able to manage to do all the things they have to do in the world of persons without autism! They will always be autistic but it will be more “invisible” and acceptable!
Perhaps those children we feel we have “cured” would have, in the past, have been diagnosed as having autistic tendancies or autistic like behaviors. We treat underlying diseases and we effectively change those behaviors and they are “cured”. BRAVO to those who have managed to accomplish this for many children.
Now we must figure out how we can do what needs to be done for those who cannot be ‘cured’. This may not be 1 in 150 children anymore but it will always be too many until we effectively address all their needs!
What do you think needs to be done?
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A friend of mine who may have autism (it isn’t diagnosed, but he displays many traits) says that if he were autistic, he wouldn’t want to be ‘cured’, nor that it should be viewed as a disorder. His argument was similar to I guess the ones used by homosexuals, which was once considered a mental disorder. I kind of like his argument. Can’t think of a rebuttal.
As someone on the autism spectrum who has a grandson who is severely autistic (and who is nonverbal), I prefer and think it more accurate to call it a neurological difference.
That isn’t to deny that autism presents its difficulties, it does, but it’s wise and pragmatic to point out that it’s highly dysfunctional and dehumanizing to look at autism and autistics/aspies through the disorder/damage lens, as it were. Additionally, the focus on “curing” autism involves both science and scientism.
http://sari0009.xanga.com/607813128/autism-as-wrong-disease-demonic/
Autism Awarenessand Egalitarianism: What’s in it for me?
That being said, yes, we need to have early intervention available in all states and counties, it needs to be as cost effective as possible, it needs to be tailored to each child, and autism support/education should continue as long as the individual needs it.
Presently, however, schools for autism are not available everywhere and public school systems are not meeting needs (yet they get chiching $$$ funds for adding to the autism headcount). My grandson, for example, is now in elementary school and does not have a language board with which to communicate, though he had one in preschool and did well with it. That’s not the end of it. There are numerous grave concerns regarding the public schools ability to meet the needs of children such as him.
Additionally, most areas don’t have enough babysitters who are fully informed and functionally equipped to handle an array of autistic children. As if that isn’t disturbing news to people who have to work, people in various sectors, human services included, are not aware that there are not enough basic services such as the obvious need for babysitters, to give but one example. When queried, social services and others have suggestions of daycare places that just might provide services for autistic kids but when these daycare places are actually approached, they often cannot or won’t watch nonverbal autistic kids or will only watch them if the autistic child’s one-on-one therapists are there. (Translation: They’re willing to host the therapy but not watch the kid…yet collect the fee for watching the child.)
After hours of both his mother and I working intensely with him after reading many books and sites on autism, my grandson has only finally progressed, since his days of early intervention and being in a renowned school for autism (in another state), with one-on-one in-home (or in child care) therapy. Yes, it takes therapists. No, they don’t cost $120 an hour or anything like that. They get paid about 8 to 12 dollars and hour and right now, due to financial challenges, the state pays for it. These therapists are specifically trained to work not only with all sorts of autistic kids but this particular autistic kid. It dosen’t have to be as cost prohibitive as some might imagine. The therapists get paid less than the public school teachers and do a far far better job.
Every daycare provider my daughter got for my grandson this year backed out, after watching him a few weeks or months, with virtually no notice (a few days at most). Repeatedly, she’s suddenly left without daycare and it takes weeks or months of exhaustive searching for her to find another daycare.
Well, this last time she hasn’t found a replacement. She’s been relying on me to watch the grandchildren but my husband lost his job earlier this year (due to restructuring at work) and we both need to find jobs in order to pay the basic bills. She’s scared. I’m scared. I still have one more teen left to care for too.
If I go to work so I can keep a roof over my head and a car with which to reach most places of employment, then I’m letting my daughter down (she’s divorced and the children’s father hasn’t paid child support this year yet and the system hasn’t been able to do anything about it because he never stays in one state more than a month to a few months…I think he purposely does it to avoid paying child support). If I help her out as much as she needs it, I let our household down.
The lives of the families dealing with autism are already taxed due to the autism. The lack of various services compounds challenges. And yet things are getting better, overall.
Yet, we worry for my grandson’s future. We wonder if he could possibly become verbal and functional. We in fact know of other autistics who started talking at ages 7 and 9 and who then did very well for themselves, considering their differences and challenges. We wonder if poor/spotty/disjointed/absent services will continue to impact not one household but two.
And we keep hoping for the best. We have to. Yet we know we’re in for rough times, only for most people to have no idea what it’s like, many giving us dirty looks in the grocery store because we have a nonverbal child making seal like sounds who looks too big to be sitting in the cart. They don’t understand the simplest things such as no, it’s not a good idea for my daughter to move the cart up against one side of the isle so that my grandson, who is incredibly coordinated, may open stuff as he’s grabbing containers off the shelf. As. For as severely autistic and nonverbal as he is, he can open anything faster than any adult I know.
It really burns me that many people still think that autism is just another way of saying brat. I’d like to make them set the boundaries and restate the rules hundreds of thousands of times and not spoil their kid, only to have a kid who doesn’t seem to “get it.” I wonder how smug they’d be then. No, they’d be us. Then they’d know. Only then would they get it.
This is a post I have been meaning to write. I agree with eveything you said. There is no cure for ASD as it is a neurology difference. There are symptoms that go along with it for some that are painful both physically and emotionally, and those we can alleviate with therapy, patience, diet and a lot of love and understanding. This opinion of ASD is void of an agenda promoting anything other than early intervention, love and understanding. This opinion also recognises that those on the spectrum are valuable and have much to offer because of their difference. If only we can find a way to tap into that. I only hope that this belief will become the popular one so that more educators and school administrators begin to understand on a more intuitive level how their own behavior and attitude impacts those on the spectrum. You have good, positive energy! Thanks for putting this out there!
Couples need to know that men who father babies into their mid thirties and later will have a higher and higher risk of having autistic children, schizophrenic children etc. There are many excellent scientific papers for the past 50 years on this subject. See the references in paternal age effect article in Wikipedia.
I’m not all that educated in the world of Autism, but I think I understand what you’re saying. And, if I could make a bit of an analogy here… I’ve seen a sort of social blindness in the nations schools that inhibits their ability to recognize underlying issues when a student begins displaying behavior that is not considered acceptable in comparison with the group. Dyslexia, and other learning disorders would be the most obvious. And, despite the “cries for help” there are still children who go their whole lives without knowing that their inability to keep up with the class is not because they are stupid but because they have a genuine disability. That it is not their fault.
I think the biggest help to today’s children, and future generations would greatly benefit from first getting rid of the arrogant, impersonal, or just plain lazy and impatient frame of mind that allows such problems to go overlooked and without help in the first place. Then maybe the diagnosis, treatments/therapies, and the ability to live a “normal” life would me more accessible to those with disabilities.
Your son is very lucky to have you.
And, just to let you know, I’m referring to the teachers and other school staff here. The people to whom parents entrust their children’s well-being every day. Whoops! That ended up being a lot longer than I meant it to be.
I think I’m following what you’re saying and if I am, then I think I agree with you.