Showing posts with label Parent Blame. Show all posts
Showing posts with label Parent Blame. Show all posts

A Note to Grandparents



Dear Grandparent,

How you involve yourself in the life of your autistic grandchildren can make or break your entire family. Parents of autistic children often have to distance themselves from negative family members, because of the harm it causes for their children to be around such influences.

Do you want to find yourself on the outer fringes of your children's and grand children's lives?

If you can admit to having said things like, "But there's nothing wrong with him," or, "A bit of discipline will fix that," or, "It's all in the parenting style," then sadly, you have to also admit that these are judgmental statements and you have been a negative influence in your family.

So you need to make a decision - do I want to have positive involvement or not? If your answer is yes, then I highly recommend the following page:

Especially for Grandparents... <--click!

An excerpt:

What if I don’t believe the diagnosis?
That’s your privilege. But keep in mind that the child’s parents believe it. They live and work with the child daily and are in a unique position to notice the deficits. Because they care deeply about that child’s future, they aren’t concerned about the stigma of a label, as long as it means the child is eligible for the specialized programming she needs. They have put their pride aside for the sake of the child and expect the same from the rest of the family.
Consider carefully what could possibly be gained by refusing to believe the diagnosis. Then consider what could be lost. The parents are already living with a great deal more stress than other parents, and they don’t need the added strain of skeptical or judgmental grandparents. Otherwise you may suddenly be faced with the pain of being unwelcome in your grandchild’s home.

The article is focussed on Asperger's Syndrome, but all of the content also applies to autism spectrum disorders in general. If you want to have positive relationships in your family, then I hope you will follow the instructions in that article.

Wandering

With three tragic drowning deaths of autistic children who wandered in the past week, wandering has become a big issue. This article is by far the best thing I've read on the topic so far:

http://www.babble.com/mom/autism-community-reels-three-drowning-deaths-in-one-week/


Landon Bryce also reposted a previous article and video clip. This is essential viewing and will shake up your way of looking at wandering:

http://thautcast.com/drupal5/content/wandering-and-gulf-between-parenthood-and-me

http://farm6.staticflickr.com/5008/5353693397_66981662db_z.jpg

ADHD Goes to School, by Mark Bertin, MD

Article Excerpt:

When a child has a language delay, people tend to accept this fact at face value: Joseph is 6 but speaks like a 3-year-old. While understandably upsetting to many parents, no one expects Joseph to speak differently before he is able. There's a scramble to start services and a patient approach while allowing language to develop.

The same attitude does not hold for attention deficit/hyperactivity disorder (ADHD). ADHD is a developmental delay in a broad skill set called executive function. A huge body of research defines it as a medical disorder; neither parents nor children benefit when people suggest otherwise.

Executive function represents our capacity to self-regulate, encompassing everything from focus and impulse control to long term planning, prioritizing, organizing our lives and emotional control. It is required for social interactions and classroom learning. Imaging studies confirm that children with ADHD experience immature brain development, showing again that it's neither a child's fault, nor a parent's, nor society's.

A child with ADHD may be 6 years old but going on 3 when it comes to self-regulation. Often parents hear, or even feel themselves: He's just lazy. He needs to get his act together. He knows better. Yet inconsistency is inherently part of ADHD, with moments of clarity balanced by a perplexing inability to hold it together over an entire day. So he probably does know better -- but without typical executive function, lacks the skills of other children his age to follow up.

Link to full article:
http://www.huffingtonpost.com/mark-bertin-md/adhd_b_1517445.html

Is autism an epidemic? I think not...

In the years between 2006 and now, the incidence of autism in the USA has increased from 1 in 110 to 1 in every 88 children. Does this mean we have an epidemic on our hands, or is something else at play?

I have long-held that claims of autism being an epidemic is merely sensationalist fear-mongering on the part of the media and the ever-hungry research funding machine. There is absolutely no evidence that autism is an epidemic. Rather, we have become better at describing and therefore identifying it. Some other diagnoses have also been moved across to the autism umbrella as more knowledge has become available and therapists have viewed their patients through a different lens. As well, awareness has increased significantly, and the criteria for diagnosis broadened in the early 90s, in particular by including Asperger's Syndrome.

There are a range of sensible reasons for the increase in diagnosis of autism, the greatest being awareness.



Growing awareness tends to work just like a snowball. The further it runs, the fatter it gets. So as more people become aware of something, still more people consequently become aware, who then make even more people aware - and so the awareness-snowball continues to grow.

I believe acceptance is another significant factor. The history of the politics of autism has meant that until the very recent past, parents were frequently against labelling their children. Instead, families often hid their children from doctors if they thought something might be developmentally "wrong" - and they had very real reasons to do so. That's a whole 'nother article, but the quick version is that a diagnosis often meant parents would be told they had been inadequate and could even mean that children might be removed from the home and institutionalised due to such "inadequacy". It is really only since the 1990s that this fear of external judgement has begun to diminish, and parents have instead been free  to focus their energies more on addressing the needs of their children. A diagnosis helps to do this, so people have become more pro-diagnosis as a result. My belief is that this shift has also led to a great deal more chance of a child being diagnosed, who would previously have not been.

So, the big question is...

Is Autism an “Epidemic” or Are We Just Noticing More People Who Have It?

(click to read the article in a new window)

I highly recommend this article for some insight into what's really going on, rather than buying into all that guff from the sensationalist media.

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How do I parent an autistic child?

20 Ways to parent an autistic person.

How do I do it? The truth is, I wing it, every day. It's not all that complicated really.

First and foremost I focus on the positives. I choose not to live in a place of self-pity, because I don't believe I have anything to feel sad about. I do think he chose the right parent, because he has strengths where I have weaknesses (e.g.: he is more assertive than me), and I have strength where he has need for support (e.g.: I have better organisational skills). I face each situation and adapt the solution to whatever the problem is in that moment. There are probably many other things I do, but below are the top 20 principles I try to live by.

1. I love him, always and unconditionally. He is so loved he gets annoyed with me! :D

2. I accept him, all that he is, both inspiring and challenging, because acceptance allows me to work with the challenges instead of wasting energy fighting them.

3. I support him - in all that he needs to do, all that he wants to be.

4. I choose to be proud of who he is. He inspires me every day, and I tell him about it - I have also taught him to be proud of who he is.

5. I am honest and realistic with him.  The world is a difficult place for him, so I am training him to be able to survive in that world.

6. I advocate for him. Every day I stand up for his rights and try to shift the negative view of autism into one where his strengths are embraced instead.

7. I give him structure and predictability. These things allow him to cope with the more difficult parts of his day.

8. I provide him with opportunities to succeed. If I don't let him try, I'll never know if he can do it.

9. I encourage him in all things - he has been taught to never, ever give up.

10. I place no limits on his abilities. He amazes me every day, why would I assume there is something he can't do?

11. I constantly expand his comfort zone. He tends to be very anxious, so I regularly push him to try new experiences.

12. I ask him questions - I don't assume I know what he is thinking or experiencing at any given moment. Even if I think I've got a situation worked out, I will check in with him to be sure I am on the right track. This requires me to always remember my humility.

13. I protect him. I don't bend to the will of others when they judge and tell me/him that we "should" be doing something differently. We do things the way they work for us.

14. I listen to him. 'Nuff said.

15. I let common sense prevail. If the simplest answer feels like the right one, that's the one we use.

16. I protect his right to have what he needs - such as hand flapping or recovery time alone.

17. I adapt where needed. He is often unable to adapt, so forcing him to do so is counter productive - in which case I see adapting to be my responsibility.

18. I back down when he needs me to. Just because I'm in charge doesn't mean I have to win every situation. And besides, is a win really a win, when it means my child suffers or the situation worsens?

19. I teach him resilience and coping skills. As much as it would be nice for the world to adapt around him, currently they do not, and there are a lot of rude neurotypicals out there. I teach him how to hold his head high in the face of their ignorance.

20. Most importantly - I laugh with him all the time. We have a life filled with giggles and joy, and we face the tough moments together, always looking to find a way to laugh off the stress.

You really think that?!

A teacher said a couple of interesting things to me the other day, and I'm so glad he did, because it gave me a chance to present to him a different way of looking at things. The teacher concerned is passionate about teaching, about reaching children and having a positive impact. He's intelligent and obviously thinks hard about the best ways to teach, so please don't think for a minute that this kind of thinking is far off the beaten track.

These statements below both might seem a lot like reasonable, rational, logical statements, but the reality is that they are in fact simplistic, unreasonable, illogical, inequitable, lacking in acceptance and quite frankly, very ill-informed.

The world isn't filled with people with Autism, so...

The first statement made was that a child with Autism lives in a world that isn't filled with other people with Autism, so the child with Autism needs to modify/adapt in order to fit in.

Sadly, this is VERY common thinking. Teachers everywhere expect the child with Autism/Aspergers in the mainstream classroom to adapt and modify constantly in order to fit in. Teachers have lots of good reasons for this thinking, not least of which is that their classroom will be easier to manage if they "can just fix that Aspie". And sure, the world isn't filled with people with Autism, so there are times when the person with an ASD needs to fumble their way through neurotypical settings and adapt as best they can.

But what this hegemonic thinking chooses to forget is that Aspergers, in many ways, could be looked upon as a dysfunction of the ability to adapt. Adapting to change, to lack of predictability, to the world around them is extraordinarily difficult for people with Autism. And they are surrounded by neurotypicals who can change pace or switch channels faster and more naturally than they can change their underwear. But still the weight is on the shoulders of the individual with Autism to do all the adapting and changing to the neurotypical world.

Would you say the same thing to the student with Cerebral Palsy or spinal injury? (ie: You can't walk properly, but the world is filled with people who can, so you'd better start learning how to do it better. And because you don't walk like the rest of us, we feel awkward and uncomfortable when we watch you, so can you make more effort to fix that please?)
That's the kind of thinking which used to keep wheelchair bound people out of education facilities, restaurants and malls because of steps and inaccessible doorways. It's also the kind of thinking which meant little kids with CP used to be placed into nursing homes with dying old people.

Would you say the same thing to a deaf/blind student? (ie: You can't see/hear properly, but everyone around you can, so you'd better adapt lickity-split!....")
If we thought this way, we wouldn't have those noisy, vibrating pedestrian crossing buttons which keep people alive on busy roads.

What about a student with dyslexia? (ie: "We know those words are moving around on the page for you, but hey, it's not a problem for everyone else, so you'd better adapt to how we do things, because it's too inconvenient for us that you're different!")

We all know this is unreasonable thinking and that we need to make adaptations to enable all students to have an enjoyable and successful education. The message here is simple - students with Autism are entitled to the same level of regard.

The position that people on the Autism Spectrum must adapt to the world around them simply because everyone else in it doesn't have the same needs as him represents exclusivity and absolutely lacks in empathy and compassion for the difficulties faced.

It's tragically ironic to me that we talk about Theory of Mind (the ability to put yourself into someone else's shoes and imagine their experiences) and Aspies' challenges around this, but much of the time we refuse to see things from their perspective, and instead try to find a way to mould them to fit into our neurotypical way of seeing and doing things.

Maybe we could consider instead, showing a little empathy and creating a space which makes them comfortable enough to excel and experience true happiness.

A moment in an Aspie's shoes:

The student with Autism/Aspergers is probably very anxious.
The student with Autism/Aspergers is probably in sensory overload most of the time they are at school.
The student with Aspergers finds it difficult to adapt.
The student with Aspergers isn't necessarily aware that they are annoying someone or disrupting the class. They won't necessarily see people's reactions.
The student with Aspergers has no idea what everyone wants from them most of the time, or why they are in trouble. (How are they supposed to know what adaptations to make?)

Allow the person with an ASD to be themselves in your classroom.

Think about it this way. The student with Aspergers struggles to understand the social communication around them. If you ask them what they think of it, they'll tell you how they don't get the point of all that stuff. It is also virtually impossible to motivate someone on the Spectrum to do something which doesn't suit their outlook on the world. If they can't logically see a reason to do something, then they simply won't, because to them it defies common sense to go down that path. (I suspect there are plenty of neurotypical people who would feel the same way if they were being told to do something which made no sense as well).

...it's a very illogical way to approach educating them...

This by definition means that they are highly unlikely to do the adapting that you are asking of them. So it's a very illogical way to approach educating them. Do you think that it's fair to set them and yourself up for such an epic failure like this? In the long term, quite seriously, it's far simpler to just educate the other students about Autism, and make changes which allow the person with an ASD to be themselves in your classroom.

An afterthought: If you think you've managed to fix your mainstreamed student with Aspergers, because they're no longer disrupting the class, have a think about whether your behaviour management strategies might be suppressing rather than allowing them to be who they are. How happy are they really? Are they just trying to please you by being well-behaved, but not getting any school work done or making any friends? Are there any other similar incongruous pieces of data in the student's experience at school?

Just because they're behaving, doesn't mean they're learning, achieving their potential or, most importantly, happy. It usually just means they want to please you, and sadly, they'll even harm themselves to achieve that.






The second comment was an idea he had that Autism is rapidly increasing in numbers because of all the technology we have around us. The comment was that we are creating a generation of people with Autism because they spend so much time in front of computers and playing video games, so they don't develop social skills - and consequently develop Autism.

Autism isn't something you can catch... It's not something you develop because of your environment.

First, Autism isn't something you can catch, nor is it something you can get from sitting in front of a computer or playing too many video games. It's not something you develop because of your environment.

Any inference that environment causes Aspergers/Autism is just another form of parent-blame, and is archaic, unhelpful thinking, like the label of "Refrigerator Mother" from the 1950s.

The increased diagnosis of Autism/High-Functioning Autism/Aspergers is due largely to increased awareness. It wasn't until 1994 that Aspergers Syndrome was added to the DSM IV (the official, internationally accepted diagnostic criteria for mental illness and developmental disorders). We also know now that statistically about 1 in 100 people has Autism. So it stands to reason that once a label was available for Aspergers, there would be a helluva lot more diagnosing happening from that point forward. (Coincidentally, the prevalence of home computers began its spread/growth from around 1994-95, but that still isn't a relevant detail.)

As to any increase in Autism occurrence outside of that, I think we can safely say it has nothing to do with the rapid technological advances of the last 15 years or so. I won't profess to be a Darwinism expert, but if History and Science teachers have served me well, it's clear that evolutionary upheaval tends to respond to the much more pressing matters of survival, like extreme climatic change. It's barely within the realm of logic to claim that evolution would react so strongly to such minor stimuli as a computer screen!

Besides, it's nothing new - Aspergers symptoms were first recorded by Hans Asperger during World War II. We just didn't know about it until recently because his notes/records were hidden from the Nazis (he was worried that the children he'd been observing would be taken away and killed or subjected to scientific experimentation). Eventually his daughter had his findings published and now we know about Aspergers. Voila! Let the diagnoses begin!

Technology opens doors for people with Autism...

If technology has played a role in the world of Autism at all, it has been to open doors. Many people with ASDs feel at ease in the world of technology because machines are structured, predictable and non-judgemental. Now people with ASDs have many more exciting (and less stressful) career paths available to them, and greater opportunities for a happy, fullfilling adult life, with less pressure to perform well inter-personally in the workplace.