This is an opinion piece by James Terminiello in NJ.com. Terminiello has an autistic son diagnosed in 1991.
This is an opinion piece by James Terminiello in NJ.com. Terminiello has an autistic son diagnosed in 1991.
Interesting viewpoint. I really get the parent's perspective. I have worked with individuals with autism at that level, and it is nothing like Temple Grandin, or my YoungSon, who I am confident will find his quirky niche in the world. Autism does indeed cover a broad spectrum of abilities and challenges, and I can see how the neurological differences have something in common. And while they all can fit under one large umbrella, I can see how acceptance of autism at my son's level could threaten folks more severely affected. If the public perception of autism shifts to accept the quirks that may accompany Aspergers kids and adults, there may be less support for research and therapy for those in real need of a cure. My autistic son doesn't need fixing, but it isn't fair of me to assume that every person with autism is happily and successfully living with their condition.
In a sense, it is just a question of semantics - if we had different names for such diverse conditions, it would clear up this matter. sort of. But then the issues would be:
1. Where to draw the lines? Each person with autism is so different. Would 10 different labels be enough to exactly fit each individual person? 100? 1000?
2. As the author of the article said, the huge number of kids diagnosed with "autism" is what is driving the research. If a large percentage of the autistic population were separated from the most severe, would public interest wane? Where would that leave the small percentage of individuals so severely disabled?
I certainly don't have any answers, but this is an interesting conversation to me.
Those advocating more support for the severely disabled autistic set should be more careful not to offend the Asperger's set. Aspies or others only slightly affected by autism hold many keys for understanding, bridging the gap if you will, between neurotypical and autistic experience. I grew up with severe communication deficits, which went untreated due to the fact that no one knew about autism back in the day. And because perception of my high IQ blotted out any questions of learning disability. Yes, I suffered. I was potty trained at a normal age, but continued having accidents into first grade because I didn't know how to tell someone I had to go to the bathroom. I would get sick and throw up and not tell anyone. I was punished for misbehavior that another child did because I couldn't speak up to defend myself when wrongly accused. I don't need anyone telling me I didn't suffer because I don't have infantile autism.
Yes, my thoughts exactly Earthrootsstarsoul. I'm so sorry that you had the childhood experience that you had. I do for my son what I do so that he does get the understanding he needs. I get concerned that because of a lack of resources, communities and families feel the need to pit themselves against each other and compare their pain and experience and call it better or worse. There is real pain experienced by the individual who is misunderstood, punished due to no fault of their own and not taught the way that they need to learn. It causes disaffection, alienation and without a loving supportive family, in previous generations, undiagnosed spectrum disorders may have caused spankings and punishments of children who could not change due to no fault of their own. What a horrible way to grow up.
This pain is also held by families who must work so incredibly hard to help their schools and communities understand their children to find a place that is safe and where the child can succeed. The man in the article who lines his pencils and is a loner but makes 75 thousand a year may also be the same man who is in terrible pain because he can't keep a relationship going or can't keep a job because he doesn't know how to solve problems with his boss or coworkers. This person's pain doesn't diminish the pain of families who's child will forever be dependent on them. Insurance companies win when we pit one group against another.
I know personally how much it costs for OT/PT/speech and pragmatics. Insurance companies and schools SHOULD pay for this. We as a society need to invest in children, all children who need help and support, not leave families to fend for themselves.
Glad someone finally said it. I know several people who have children diagnosed as autistic who are nothing more than attention seekers taking advantage of resources and privileges which should be for children who need it. Of everyone I know who has a child with autism, only one is actually "disabled". This child has a service dog which was trained and donated by a program in our region... not long after, another "friend" begins peddling for donations for her "free dog". A person on my street gets free street parking because of their son's disability (I get that the disabled parking may be required in certain instances for appointments/access/safety, etc, but in this particular setting, it's just a blatant abuse of a privilege to park an extra vehicle on the street 24/7, (where everyone else gets ticketed) that they don't have room in their garage for because they choose to store a classic car there instead,). A friend of mine fought the school board to get a 10 year old kid expelled for fighting with his "disabled" son (both kids were equally involved, I know the child very well, he could have been held equally responsible). Another (same one as the one asking for a service dog) got a teacher fired for taking her kid's cellphone out of his hand during class time, claiming he needed it because he can't communicate as he has autism.
All of these parents receive disability payments from the government each month and none of them spend money on resources to benefit their children, which is what the payment is for. They go on about how capable and "just like everyone else" they are, yet they still collect a check at the end of every month for some reason. I wish instead of offering payments directly to parents, they would just fund resources directly, to stop encouraging people from unnecessarily having their child diagnosed at the first sign of quirky behaviour and taking necessary attention away from children who actually need it.
Hmmmm, all of the above is very inflammatory. I personally don't know ANYONE like the families you describe. I try to avoid pitting groups of children against each other. What's the point. In this society, everyone can be on the alert for those looking for a "handout" and certainly there must be some who take advantage.
BUT I have to say...ALL the families I know whose children have a diagnosis of autism do NOT want their child to have the diagnosis, they only want their child to do well in life and not experience anguish, alienation and frustration due to misunderstanding and want them to find a place in the world where they will succeed. I know NO one who receives a disability payment for their child. It is a common misunderstanding, but, there are income guidelines for disability payments firmly in place. Disability payments are available for families who have an income below the poverty line. Autism knows no income barriers. If a parent uses that money to buy things and not care for their child that's called poverty not misdiagnosis. An autism diagnosis is given after a thorough evaluation that takes many hours over multiple days. The diagnosis is real. While you may have issues with their parenting it's not an issue with their diagnosis.
We have come far since the days when "quirky" kids were given a paddling in the principal's office and parents were told to give their kids a good spanking because they were discipline problems. Now we know better.
Lastly, I see these kind of arguments as constructs, false constructs, to pit people against each other for limited resources when the powers that be hoard their wealth..... We fight wars all over the world and spend billions to bail out bankers....but, let's not talk about that....let's fight about who's child is more deserving of the VERY limited resources allotted to children. This is a political issue and a public health issue.
What I was also saying was that you can't just "have your kid diagnosed with autism". The standard protocol for diagnosis (at least in the states) is rigorous and many diagnosticians won't make it at all until 7 when what could be lagging developmental skills clearly become pervasive delays.
It is very painful to have a child with this diagnosis. They don't relate to you in typical ways or through reciprocal communication and reciprocal shows of affection despite having much love to offer. Parents often feel self doubt or doubted by their community thinking what's wrong with me, what is wrong with my parenting, when their child does not learn or think the way that they or others would expect.
I see now you live in Canada and I don't know the supports available for people who have children on the spectrum. Only you can speak to that. Personally, I have taken a 10 year absence from my career as a social worker to focus on the development and progress in my eldest who is on the spectrum. I know how much of my own money we've spent in treatments and therapies. I know how much money I haven't been able to make in order to properly raise my son. SO, I don't think it's fair to judge others not just for fear of offense but also because it is HARD and soul searching work to raise a child with learning and thinking differences so that they become solid members of their community. I would LOVE to have my society support me on some level the way that european societies and canada help their societies through redistribution through taxation. Clearly, that shows my politics. But, maybe, consider on the level of those you have interaction with day to day, that maybe they are being "flip" with you to cover their sadness or fear. Maybe, they also don't know how they are coming across because they are "awkward" or "quirky" themselves and have a child the "same way".....pretty typical by the way, that someone in the family would have a spectrum disorder if a child has the same diagnosis. Please just try to think it through before coming to inaccurate conclusions.
I know that this is a political issue, as well as a health issue, but honestly, we don't support families, family life, choices for children enough in the states. There is much fear and stress here, of loosing jobs, insurance, how to afford the skyrocking cost of housing food and higher education etc, that european and canadian families don't deal with on the same level because there are more social safety nets, free health and free or low cost higher ed.
What I guess I am trying to say as well is you have a system that is more supportive. You don't have a perfect system but I think that many American families who deal with autism and the financial strains that they absorb, would be happy to have this level of support and not be critical of it.
It would have been best to keep those feelings to yourself or possibly take this as an opportunity to learn. I don't know the few people you know who apparently are cheating the system but the many people I know who are not cheating the system use the money to help faciliate many important things in their childs life. And benefits are not easy to get. Let's work on apathy today k?
I do social work, with a population of families with kids with disabilities. Over the past years, I have directly helped dozens, maybe hundreds, of families apply for Social Security benefits, for their children with autism or mental health diagnoses. I am also the "go-to" person for other resources in my metropolitan area (specialized summer camps, food and clothing banks, low cost OT services, etc.). The view from the inside is that there are too few services available to families that truly need them, not that anyone is getting rich off their kid's disability. I have worked with one, count them, one! family that could be said to be "milking the system". Even that family was living well below poverty level, hardly a lifestyle choice anyone would consciously make.
Many families are living in poverty as a direct result of having special needs kids. Even if you didn't make a conscious decision to quit work and stay home with a high needs kid, how many employers can be patient when Mom has to pick up child early from school 3 or 4 days a week due to behavior? Some people have to quit their jobs because state sponsored medical insurance is the only way to get needed services for their child. What if there simply isn't a day care equipped to care for your child over the summer? This was my reality for several years, and, yes, I did receive some assistance.
I hate when stories come out in the news about "welfare queens" having babies just to stay on welfare and drive a Cadillac, parents coaching their kids to appear stupid for an evaluation, and the latest locally, widows who don't report a spouse's death, so they can keep getting retirement benefits. I suppose there is a grain of truth in the stories, but they are not the majority, or even common. Try living on the amounts SSI or welfare recipients receive before you condemn anyone for accepting assistance.
I think the "welfare queens" are a bit more common in Canada because of the way our system is. All of our therapies, programs and doctors are covered by our provincial health insurance, so there is really nothing to stop people here, if they are really determined, from going from one doctor to the next until one finally caves and says "ok, your kid has autism". Nothing is out of pocket, they just swipe your health card and the doctor will see you. If you don't like the answer you got, you go to the next one the next day. Once they get the diagnosis, they sign up for the payments. What I was saying is that if they took the cash payment to parents out of the equation, and put that money directly into funding therapies and programs, there wouldn't be as much incentive to cheat the system. Nobody would seek out a diagnosis for their child just so they could go to a program they don't need.
I didn't mean to upset people with family members who legitimately have a disability, quite the opposite, I'm upset with people who use a condition which is difficult to disprove, for their own personal gain.
Before I had my son I spent a lot of time volunteering with an organization that assisted with providing service dogs for people with special needs, and we had the same problem... people who abuse the system and make life more difficult for people who really need them.
Wow - Ontario must be a lot different than BC. I have a couple of friends with children on the spectrum (and ds2 is still going through assessments - we have one assessment that says "no", and one who says "Aspergers" and two who say ADHD-Combined type, along with something...suggestions include Oppositional Defiant Disorder, Anxiety Disorder, SPD). They've had to jump through hoops. One of them ended up quitting her job, so that she can take her boys to all the various therapy appointments they need, and her "benefits" mean she has an aide a few hours a week. The aide might look like a luxury from outside, but it's all that's keeping her from a full blown nervous breakdown - her kids are hard to deal with.
I don't know anybody who gets this diagnosis for freebies and treats. They do it, because there are crazy challenges involved in dealing with their kids. The benefits are basically funding for aides and therapy.
I haven't read the article, but this quote from the OP kind of rubs me the wrong way:
My son probably seems quite normal to most people outside our family. He's certainly doesn't have autism, in the classic sense (what I think is now called "low functioning" autism). He's high functioning, gifted, etc. To suggest that he doesn't truly suffer is so far off base. Pretty much everything is hard on him, because he simply doesn't think/function like most people. A poster upthread mentioned not being able to defend herself, and that rings a bell (among other issues he's had). It took us a while to figure that one out, and he went through a lot, because of it. He also totally internalized it when he got in trouble for something someone else had done, and didn't/doesn't seem to understand that he hadn't done anything wrong (probably because he has so much trouble understanding the rules/boundaries in the first place).
It's hard to decide what constitutes "reasonable bounds".
I do have an opinion on what the OP posted, and I am fairly passionate about it.
I have 2 nephews with severe autism. They are 10 and 13. Both are diapers, one is aggressive, one has gut issues, one is a flight risk, one has no speech, one only has echolia. They will never live alone, it is unlikely they will have jobs (other than make-work type jobs, and they are probably not capable of even that). My sisters life is very, very difficult.
I will be happy (yup, happy) if they separate out autism from Aspergers. I am entirely tired of people thinking autism is just a "brain difference" and that autism simply means "quirky kids." We will never do proper research into the disorder if everyone thinks autism=Abed from Community or Sheldon from Big Bang. I feel lumping Aspergers in with autism has caused less real awareness of what autism can look like than perhaps anything else.
Now, I very much do want kids with Aspergers to get funding and services for Aspergers. I think people with Aspergers often do require support. I just think they need to be in a different category than low functioning, classical or regressive autism.
ETA: I finally got around to reading the article the Op posted. It encapsulates what I was trying to say. I wish it had a few more stats, but that is my only real quibble. The comments at the bottom of the article are also worth a read.