Can Parents of Children with Autism Really "Educate Themselves?"
Parents, you must educate yourself on what's safe for your child. I have a typical and autistic child. Read, read, read and make your own decision.LC is repeating something I've heard over and over again - from parents, teachers, therapists, doctors, and self-advocates.
It is my considered opinion that "educating yourself" about autism through hours, days and weeks of reading, attending conferences, and tapping into the media is highly over-rated.
I know this sounds strange, coming from the About.com Guide to Autism! But I have been reading, reading, reading... listening, interviewing, watching, and querying for several years now. And while I have formed personal opinions on a variety of autism-related topics, I am still unable to say absolutely that I KNOW what causes, prevents, treats, cures, or "recovers" autism. I can't even say for certain that I KNOW there is an autism "epidemic!"
Of course, I've learned a great deal. I can tell you that early intervention is a good idea - though not the panacea that some suggest it is. I know that applied behavioral analysis can be very useful if it's done right - and traumatizing if it's done wrong. I know there are a great many people developing a great many treatments for autism - and that some have potential while others are pure snake oil.
But any parent who spends more than half an hour in research can tell you that there is crystal clear evidence (provided in published books and articles by credentialed, respected sources) that...
- We are (or are NOT) in the midst of an autism epidemic;
- That autism is (or is NOT) a primarily genetic disorder;
- That children with autism do (or do NOT) benefit from special diets;
- That vaccines do (or do NOT) have a causal link to autism;
- That school inclusion is (or is NOT) an ideal setting for kids with autism;
- That biomedical and behavioral interventions can (or can NOT) "recover" children from autism;
In fact, the ONE POINT upon which virtually everyone agrees is that the symptoms of autism vary wildly from person to person, and that every situation is unique.
Given that, as a parent, you are parenting only your child (or children) - and that you are living only your own life, reading and educating yourself will only take you so far. In the long run, you must make decisions based, in the case of autism, on what you believe to be true and best for your child and for your family.
Yes, you can educate yourself about autism. But once you understand the basics of the disorder, the debates, and the resources available, you'll have to make choices based not on what you KNOW but on what you BELIEVE to be true for your individual child, your individual family, and your individual circumstances.
It may improve your peace of mind to join up with others who believe as you do. But the reality is that, at this point in history, you will not find the ultimate truth through reading or self-education. What you'll find is the approach, the community, the philosophy or the setting that works best for you, your child, and your family.
Comments
Of course they can educate themselves, but not to the point where we know the subject matter better than a trained immunologist, developmental pediatrician, toxicologist and pediatric neurologist. There are limits to what a parent can do, absent years of scientific education and training.
This all depends on the individual and their own hopes and expectations. If one is set out to cure autism, there’d be no stopping that. I met a parent that heard prozac would make a non verbal child speak, so of course they gave it a whirl without researching the medication at all. There’s many who do those sorts of things when they hear about it. When and if a child ever speaks, no one can really know of why that happened. Some who change diet and their child improves, it could be that child just clicked at that point in time as a result as a combination of things being done but it seems always to be related to whatever was newly tried. If any are wondering about that prozac, the child is still non verbal.
All kids with autism can improve. As an example, I did nothing extreme really, and neither did my friend whose child is a year older than mine. both our kids were non verbal, started saying single words, then two words, repeating phrases to eventually more functional language. The difference is my younger child clicked first, my friends child a year later but went through the exact same progress and stages as mine did. But there’s more to autism than verbal language, there’s the use of that language, social interpretations and often repetitive behaviors and sensory issues, following two step directions, staying on task and so on and on.
That’s where educate yourself comes in. What worked for my child may only ever work for a handful of other’s but because I didn’t drastically alter much, it’s easy to try. Sometimes you just get tired of having to read and keep up on al this new autism stuff, and for some educational law can be confusing. Some of the autism info wouldn’t pertain to all either so one needs to weed out.
The great thing about resources, it networking to get different opinions.
It’s heartbreaking to hear that parents such as the one previously mentioned are exposing their children to heavy medications and other intrusive therapies because of speculation. I believe what is really important when a parent is about to embark on any type of treatment or therapy is the scientific evidence based on that research. Look at their quantitative data and understand it to formulate your decision.
My Autistic son is 25 years old. There was little help when my son was little in the state of Arkansas. We had no diagnosis other than developemental delay. I saw a movie “Son Rise” That was the first time I ever heard of Autism. I knew instantly that was the problem. However, finding treatment was impossible. We sought out Easter Seals for problems with feeding, speach therapy and OT in school. Today there is a focus on children with Autism and many different treatments. I educated myself and did the best I could. At 25 there are few options for treatment or help for these guys. Very few programs for the guys that have higher IQ’s. Now what? What do you do with a 25 year old man that is smarter than most but has the social, emotional and judgment of a first grader? I am pleased with the progress and attention to this horrible thing called Autism. I only hope the focus will look down the road when these children grow up.
Thank you for this blog. I struggle with accepting the fact that the medical community does not have an answer for us at this very moment. As parents we know in our hearts there is an answer out there and it becomes very frustrating that we can not provide this for our children. I believe that we need to gather the knowledge, our support, and pray for discernment to know which path to walk next.
I think the medical community is aside from this however even if they had answers as to why it doesn’t then mean that’ll change our kids. I am a parent and in my heart, I do not know for sure there’s an answer or ever will be or that’ll it’ll make a difference to tell my child the why’s when he still has autism and I’m not sure it’ll even make me feel better. I’ll still be doing the same ole things tomorrow as I did the day before. I also think all paths cant be singularity the same. No two kids or two paths may ever be the same. Many things factor into this. We also are often bombarded by fly by night treatments and offers which makes any choices more difficult. As much as the net can be imformitive, it’s also the worst place to be a target. I never get those things in my snail mail. You can read read read till your eyes turn red and there’ll be one person wh sounds so convincing that one leaps before the research (or consult a doc).
In the end, some kids may never speak, may always have autism behaviors, some will be opposite. No choice can be totally wrong or right, and parents are allowed to make a mistake here and there.
This post made me think and chuckle.
Erica, On the medications, you might throw neurologists in on that one too. No one experiments on these kids than neurologists. Maybe that’s just when seizures are involved, I don’t know.
The biggest experiment would have been Wakefield himself but many parents do this as well, all based on internet info without consulting a good doc. The neurologist my son has never gave any RX’s.
This article might be of interest, with environmental toxins contributing to Autism: “AstroTurf linked to Autism.”
I look at my son (who has Aspergers) and I look at all the reading I’ve done, and I know I haven’t gone as in-depth as I could yet. However, I know too that he’s strong-willed and is going to need to come to me to get more supports, because if I put them onto him, he’ll shrug it aside and be annoyed.
Perhaps, then, the best way we can educate ourselves is to read our children a bit more. I’m grateful to the therapist who reminded me that my son is old enough now to have a decision in what happens with him – how did that happen?
Seems just last week he was still a Kindergartener… I’m going to spend some time ‘reading’ the ‘latest version’ of my son, now, and see what directions I’m pointed toward.
I agree that every child’s parent is their chid’s expert. We have had many wonderful professionals work with our princess, and many not so wonderful ones as well. What I have learned in these 4 years we’ve been on this journey is that parents MUST TRUST THEIR INTUITION. If it doesn’t feel right, it’s not right. Period. No second-guessing. I’ve been there, done that, and my child has paid the price. Yes, we’ve broken off some relationships rather hastily because of our philosophy of not wasting time or resources, but in the end it’s been worth it. ASD therapies are confusing and some people will make you believe that you cannot educate your child. Hogwash!!! Take your cues from mother nature. Mothers are the teachers for their young because they have the intuitive connection to their off spring. We must be careful not to have the “fairy godmother” syndrome – by doing everything for our kids and not letting them make their mistakes and in so doing learn from them. Yes, it’s tough, but it does pay huge dividends. We may not have all the academic qualifications regarding ASD, but we can learn and we can apply to our kids because no one knows their child better than their parents. Soldier on, parents.
I am currently writing a book for student teachers; a large section of this book will be dedicated to teaching children with special needs. I am looking for parents to write short testimonials that can be featured within the text. If you are interested in writing something..even a few sentences..please contact me at k2broome@wmich.edu
Please help me to educate our future teachers!
Thank You!