An interesting event has occurred within the "autism" community and quite frankly I find it highly disturbing. There are some in this community that think it is their business to tell others how to raise their children. They make it their business to alienate those that disagree with them. They make themselves out to be the arbiters of what is and is not right when dealing with autism and persons on the autism spectrum. I say baloney to that...
-They think it is their business to tell you NOT to vaccinate your children. They think it is their business to tell you TO vaccinate your children. (Please get the facts, the real scientific facts, on this topic.)
-They think it is their business to tell you you HAVE to go biomed. They think it is their business to tell you TO only use conventional therapy. (By the way I will tell you that anything that is dangerous or life-threatening is irresponsible parenting. That judgement I will make and will always hold to.)
-They think it is their business to tell you, you HAVE to try every freaking new idea out there to "cure" your child. They think its their business to tell you TO stop looking for medical help for your child.
-They think because they HAVE autism they have all the answers and its their way or no way.
-They think because they are professionals they HAVE all the answers and its their way or no way. (Don't pay any attention to the study of the week either. Every week it is another reason that autism is prevalent in the society- from electrical wires, to obese mothers, to older fathers, to taking one extra swig on a coke. It's all bullcrap. No one knows why and I don't care what some expert says. Experts quite frankly are what stopped those like our children from getting the proper help they needed for generations. YOU become the expert on your child. That is all the expert your child needs.)
-They think because they have been at it for decades (like me) they HAVE all the answers and its their way or no way. (This doesn't include me. I don't judge anyone, unless of course I am judged first. It's that Inner Bitch thing I talk about all the time...)
-They think because they have been at it for a few years they HAVE all the answers because they are young, modern and plugged in.
-They think they can even tell you how you CAN and CANNOT refer to someone on the autism spectrum or what is and is not the "politically correct" term for persons with this disability; autistic, aspergean, person with autism, autistic person....personally my choice has always been simply person, human being, and in my children's case boys and now youngmen. When I describe my children, apart from this blog, I never describe them by their disability/difference/issues/problems. I describe them by their humanity first and foremost and only.
HERE Anyway here is some additional advice I want to give to every parent entering the autism world today....
Think for yourself. Do NOT under any circumstances allow yourself to be bullied into doing something that goes against everything that you believe in, simply because someone tells you it is the "politically correct" thing to do, or the latest greatest fad, or everyone is doing it, or some bigshot somewhere said to do XYZ, when dealing with an autism diagnosis and your child.
The key to knowing what to do to help your child is education and not necessarily on social media. Check out the helpful websites page on this blog to begin your educational journey. This is where I started. There was no social media when I began, so I began simply by reading book, after book, after book. Yes start with books by Temple Grandin, Tony Attwood, Carol Gray,
The OASIS Guide to Autism, Ross Greene and
Thinking Person's Guide to Autism Note: if you do find a book you really like make sure it has alot of links for information and footnotes to reputable people. This way you can explore at your own convenience and seek out what makes sense to you. Anytime someone writes a book without links, appendixes or explanations, unless it is a personal memoir, throw it in the garbage.
Honestly while social media is really good for finding support groups or maybe even seeing sometimes into the future of educating an autistic child it is not the end all and be all of reality. I say this as someone who is consistently on twitter, facebook and regularly adding to my blog. Seek out information from people but do NOT use their experiences as a way to find your child's future or a way to plan your child's life or life for that matter. Also don't let someone else's issues become yours.
Too often parents in this world try to push their ideals on others simply to prove to themselves that what they are doing is the right way as opposed to another pathway. Too often they demand total agreement in their choices or they will not include you in their clique. You wouldn't regard these people as friends in real life and they are not someone you should regard as friends in social media. Even if they have a huge following on twitter/facebook. (PS that includes me. If you don't like what I say, you do NOT have to follow my lead. I will not be insulted. BTW I don't have that big a following.)
Parenting a child with autism in reality is not that much different than parenting a neurotypical child. Now don't get me wrong the challenges in parenting an autistic child are huge as compared to parenting an NT child, but
parenting is parenting. If you would not worry what your neighbor thinks about how you parent your NT child why worry what someone thinks about how you parent your autistic child? Do what needs to be done and what is best for your child and your family.
The difference is that we are brought up to believe that we can parent an NT child by the seat of our pants simply because we are NT. It is something that comes naturally to us because we understand our children. I have news for you, as a parent you understand your autistic children too. It may be harder to get what makes them tick simply because they can't always tell you. It may be harder to figure out how they are feeling or what is going on inside, but that doesn't mean that parenting is any different. It just means you have some challenges to meet that you didn't expect when you were pregnant. No this isn't the situation you bargained for when you decided to become a parent. There are alot of situations that people don't bargain for (childhood cancer comes to mind) but they don't worry what others think when helping their child and neither should you. (No I am not comparing cancer to autism so don't leave comments to that effect.)
By the way, if you know an autistic adult, it is not a bad idea to ask them about what things feel like or how they react to certain situations. I have found this immensely helpful in understanding my children. (John Elder Robinson or Temple Grandin's books helped too) But what worked for any individual autistic to enable them to feel comfortable in situations or experience the world in one way or the other, does not mean that it is meant for your child. However, it can give you a good place to start. An example: it never dawned on me that having auditory processing issues not only meant that a person was slow on the uptake from when they are told something to when they comprehend it, but it also means that at times certain noises cause an immense about of pain. I can't tell you how helpful that was in figuring out how to support my child. But at the same extent it is not up to an autistic adult, even a member of the self-advocacy movement, to tell you how to raise your child simply because your child has autism.
Every life decision for your child is up to you from education to medicine to therapy to religion and to preparing them for their future. Do what feels right for your child. But make sure it is the best thing and the decision is about them and not YOUR fears of what they will encounter in the real world. The real world is something we need to prepare our children for. It is what it is and we need to make certain that our children are able to navigate through that world successfully or with the lifelong protection they need. Society is going to change just so much to accommodate our children's needs and then it will stop. Prepare them for that stopping point.
So as we come to the end of autism awareness month and we journey into the rest of the year without society giving themselves a pat on the back for their own magnificence in recognizing autism as a major issue, we need to remember that WE do not need someone else's permission to do what needs to be done for our children. You do not need to join the "autism club" or seek out other's acceptance of your ideas, therapies, or support systems, to have children that go on to lead successful and productive and happy lives. You simply need to take each day, each moment, each hour if necessary, and do what needs to be done to give your child the future that they are entitled to have.
Until next time,
Elise
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Comments (3)
"When I describe my children, apart from this blog, I never describe them by their disability/difference/issues/problems. I describe them by their humanity first and foremost and only."
Thank you for writing those two sentences.
Well said.
I know number of young adults, many now out of school, and transitioning to adult lives...and they are valuable resources---no doubt.
BUT...they've also been cut loose, and they struggle against feeling that way. Their parents are caught in the constant battle of "not doing enough, vs. doing too much." They want their kids to have lives...but how much is the RIGHT amount? Without schools, teachers, the structure they knew, it can all be overwhelming.
My daughter's schools were exceptional, because they were focused on the children...not their problems, their issues, or limits. They saw (as nearly as possible) the WHOLE kid...and figured out how to enable them to succeed. I hear what you've said about the posters focused on "their" way of coping. But when it comes down to it, we all think and say the same thing..."I love my kid"...period.
@galadrial@xanga - I have to tell you that we are at the point where it is important to step back but not quite all the time. The boys did need continued one to one support in college and we found a school near us that would allow us to provide that support. For them while they are bright beyond their years, the as typical lacked the necessary social and emotional skills to attend college on their own. They have now come a long way and are ready for the next step. I think parents need to create a program beyond highschool for their children, just like their children had programs in k-12. Transition planning is so important however, it may not be enough. Again just because society tells you your child is ready for something does not mean they do not need some hep for awhile longer.
It is hard to know, when to pull back and how much but remember at some point your child is also going to tell you "enough." Even if it is ten years after their neutotypical peers reach that point. You just need to work, organize and plan for that day a while longer.
And yes we all love our children but the trick is doing what is best for them not for ourselves or what was best for someone else's child.