Sunday, 1 March 2015

OUGD505: Brief 1- Autism: Asking Bloggers


By asking a few online bloggers what advice they would give to parents of an autistic child/baby I gained several responses of advice which form as contributions to the broad spectrum of research. 

http://lipstick-autistic.tumblr.com

Hello! 

I guess the first thing I can say is that parents of autistic babies/children should remember that their children are their children first, not little breathing bundles of autism. So often I see parents using one-size-fits-all therapies for their children, instead of paying attention to the child’s own individual needs. Autism is an incredibly personal experience and every child is different. You can’t expect your child is either going to be a savant or a grocery bagger—you have to take their successes and failures with who they are. The book you read about parenting autistic children may not help your autistic child, because you might be trying to fit a square peg into a round hole, so to speak. 

Two, autistic behavior is a lot more logical than many parents think. Often, when we appear to be having a ‘meaningless meltdown’, we are reacting to the presence of something unpleasant in our environment—a bright light, a texture we hate, etc—and sometimes, just asking an autistic child what’s wrong instead of assuming they’re crying for no reason, can make life so much easier on the parent and child, and make it easier for them to understand each other. Even nonverbal children can often find ways to communicate, either through text-to-speech, picture boards, etc. Don’t assume your child cannot communicate if they cannot speak. I guess the crux of this argument is make attempts to understand each other, instead of forcing your autistic child to communicate in ways you find acceptable. It will make less stress for everyone.

Three, I see a lot of parents of autistic children publicly griping about what a burden their child is. THIS IS BAD. I see parents on Facebook talking about how horrible their autistic children are and how much they wish autism didn’t exist. We see these things. As autistic people, we see them and know them and it is so utterly upsetting to realize the people you thought cared for you wish you didn’t exist. Allistic parents do not even seem to understand that we understand their hatred of us, and internalize it. To raise a healthy autistic child, you need to be accepting and loving.

I guess, one final thing, is that we are so used to seeing autism as a bad thing as a society that we forget to see the beauty in it. Yes, allistic parent, your child may struggle to verbalize the words ‘How are you’, or cry when made to eat a banana, or have odd sleeping hours, but take a step back and look how these things are affecting you—if they are at all. Look for the beauty in your child’s passion for dinosaurs, which surpasses that of every other child you know. Look at how they become calm when rubbing their favorite piece of soft fabric over and over again. Look at them as a person, as a collection of traits and good things and flaws like everyone else, instead of just some scary example of the big bad autism. If you can learn to regard autism with curiosity and understanding instead of hatred and fear, your life parenting an autistic child will be a lot easier.

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http://coolautism.tumblr.com

Thank you c:

These are some of the key points I would like parents of autistic children to know.

Your child is not broken.

Your child does not need fixing. They’re autistic not broken. If you decide to put your child through any form of therapy think about your motives first. Are you trying to “fix” them and make them more neurotypical or do you truly believe this will improve their quality of life?

Your child knows best.

We are not clueless. We know what our lives are like. We know what needs change and what needs to stay the same. If you want to put your child into therapy or social skills training make sure they understand the purpose of it and say it’s something they actually want. If at any point they decide they don’t want to participate in it anymore don’t force them to, you’re not helping.

Avoid ABA.

ABA is not therapy. For a lot of children it could be described as torture. The aim of ABA is flawed, it is aimed at making autistic children behave like they’re neurotypical and that’s very unhealthy. It has a pretty bad history of using abusive tactics and should be avoided at all costs.

Let your child stim.

I don’t care if people give you strange looks when your child rocks or flaps their hands in public. Stopping them would be equivalent to having your parent grab your face and force you not to smile or frown. Stimming is good for us. It’s healthy and shouldn’t be stopped. It is also in some cases a form of communication, know your child’s stims. When they flap their hands what are they saying? It could mean they’re happy or maybe they’re anxious or overloaded. Knowing your child’s stims will make communicating easier

Encourage your child to stim.

Seriously buy them things with textures they like, buy stimming toys like spinner rings, buy chewable jewelry. Stimming is healthy.

Encourage their special interest.

Want to know how to make an autistic kid happy? Give them something related to their special interest. Do they never stop talking about trains? Buy them a toy train. Do they love astronomy? Buy them a telescope. And please when they’re talking about their special interest listen to them don’t tell them to be quiet.

Don’t punish your child for being autistic.

Meltdowns are not bad behavior, they are not something we choose to have. I know they look like tantrums but they really are not in our control. Neither are shutdowns and sensory overload. Don’t punish your child for any of that, we’re not choosing to behave badly, it’s not in our control.

Listen to your child.

Even nonverbal children speak, just not verbally. This ties in with learning their stims. Do your best to learn how your child communicates. Try different methods of communication like tablets they can type on or pads of paper for writing. Some autistic children who normally do speak will go nonverbal during meltdowns and shutdowns. This is especially frustrating to them because being unable to communicate often worsens how they feel. Offer something to type on, pay attention to their stims, pay attention to what they have to say even when they can’t speak.

That’s all the advice I can think of at the moment. Followers feel free to send in any advice you have.

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Hey there!
The most important thing is to remember is to LISTEN TO ACTUAL AUTISTICS!
There is plenty of misinformation out there about autism, and much of it is created and distributed by neurotypicals (non-autistics) who don’t believe Autistics should speak for themselves. Most of the information out there makes Autism and being Autistic look very bleak for the future of individuals who have ASD. This is often not the case! An autistic person is more likely to be of average or above-average intelligence and possess certain skills than to be considered ‘low-functioning’ (a term that is both cruel and vague). Due to the mass media portrayals, a parent or caregiver may believe that their child is abnormal and in need of changing. Autistics don’t need a cure, or to be ‘fixed’, they just need love.
Some Resources: 
Hopefully this is helpful for your project!

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My first piece of advice to parents is not to panic. I relied on my mom a lot to help me know how to emotionally react to situations and so now, as an adult, I still mimic/ feed off her reactions. Also don’t panic because your child is yours so it will most likely be awesome. Second piece of advice, teach your child to self-advocate. No. Autistics don’t owe the world an explanation, but it helps. By listening to your child early on, you will instill the confidence necessary for them to communicate their needs on their own terms. Help children make a chart with three sections; Things I like, things I dislike, things that hurt. Not many children like fruits and veggies before their taste buds develop to endure complex tastes and textures, but there may be textures that actually cause sensory discomfort. Same thing goes with clothes. If your child starts crying when you put them in corduroy, don’t do it. Let them know that their needs are valid. Third piece of advice, your kid is still a kid, Autism or no. Loving discipline is necessary. Do not punish your child for involuntary movements or vocalization. Do not punish your child for avoiding eye contact. Do please explain to your child when they have said or done something hurtful to another person. I cannot imagine how much I would be floundering as an INFP if nobody told me when I do unintentionally hurtful things. I wouldn’t know that my tactic of laughing to make crying-people feel better was a really ineffective method of comfort. I thought I was sharing joy, and if my parents hadn’t told me otherwise, I would probably still be trying that method on sad people. For some children, personal boundaries will need to be taught. I knew an Autistic guy in college (he’s graduated, thank goodness) who was casually stalking me. One day, he actually gave me a meltdown because he snuck up behind me and poked me between the shoulder blades. He saw another guy (who had my permission) do it, and assumed that meant he had permission too. Nobody taught him about personal space. Fourth piece of advice, let your child risk. It’s okay to not be great at everything. it’s okay to learn things the hard way. If your child wants to go to the prom someday, don’t shut them down saying, “No. you will have a meltdown or someone could take advantage of you”. Instead, remind them to look for exits when they arrive at prom and to keep an eye out for chaperones who are there to help them if they need help. If your child wants to go to a sleep-over, let them know that they need to communicate their needs to either their friends or to the host parent. Let your child learn to ride a bike. It’s okay if they skin their knees. It really is. Fifth piece of advice, if you haven’t already asked lysikan andneurowonderful what you asked me, go ahead and do that. Both of them are very awesome and will give you sound advice. 



Thanks for asking such a neat question and feel free to let me know if I can explain something differently, or if you have another specific question. You have my love.


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In my personal opinion they should try to make them communicate in a way they can. Verbal, AAC, sign language, you name it. Then they should try to give them therapy to benefit their own lives and not try to be neurotypical. The children should probably know what they’re going through and they should know that autism is something they’re born with and that they can go through it. If I didn’t know I was autistic I would’ve felt depressed because of how awkward I was towards the people around me. It actually helps for them to know they’re autistic.
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Not to follow anything that autism speaks says, that their babies/children are wonderful beautiful people the way they are and do NOT need to be cured, let them stim and let them pursue their special interests. Don’t take them to therapies where the main/only goal is to make them look and act “normal”



Thanks for asking me for advice I’m pretty honored for that
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I’d say first of all listen to the child and don’t act like the teachers etc know them better than they do. It might be hard on the parents but it’s even harder on the autistic kids themselves. 
Fore caregivers/parents I think the best advice is just take a deep breath, relax and try following their pace. The world goes too fast for it’s own good already.

You should read with the light: raising an autistic child. (If you have enough time, it’s a really long)That book really teaches about slowing down and understanding the non verbal autistic boy Hikaru.

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Treat them with respect no matter what. Even if you don’t think they have any idea what you are saying or understand what is going on, treat them with respect. Talk to them, explain what’s going on. As scared and confused and upset you will be, remember that they are human too and likely feeling the same emotions. As scary as it can be parenting an autistic child it’s just as scary, if not more so, being that child and not knowing what is going on. 
Pay attention to them and respect their feelings. Even if they don’t show them the ‘normal’ ways they will show them and you need to pay attention so you can interpret them. If your kid doesn’t like touching avoid touching your kid, don’t worry they don’t love you any less because they don’t hug you. They will learn to show affection in ways that are comfortable to them. Just give them time.
Research autism try to understand what they are going through and help them better understand what’s going on.
Respect and communication are the keys to any relationship, and it’s no different just because they are kids.

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The first thing I’d like anyone to know is that awareness is one thing, but acceptance is far, far more important. There have been too many stories of parents who reject their autistic children or consider them broken, too many parents who have claimed they were “suffering” and killed their children, and way too many who speak for their children instead of letting their children’s voices be heard.

Support your children just like you would a neurotypical child. Love them for who they are, not who you wish they were. Accept them as them. They’re not suffering from anything. Autism is just a neurological difference. If any suffering is happening, it’s at the hands of Autism Speaks and portrayals of autism in the media. We’re almost demonized, and we don’t need to be cured, but the media makes it hard not to believe we’re a bad thing.


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There were also individual responses from those who personally have autism. One individual told me some interesting information about how he coped when he struggled to communicate: "I do my art in my bedroom, when I had difficulty speaking I used to draw to communicate with people". This proves from the points that the bloggers made above that each individual has personal needs with make them happy and feel comfortable. In this case it is drawing as he is exceptionally creative and talented. There was also another interesting response from a lovely young lady who informed me about a few other different types of ways of coping: "I like games of various kinds (not sports, though), drawing and working with kids. How I deal with autism related issues is a broad question. I have stim toys and a weighted blanket and Disability Services support at school and I use closed captions to watch TV and movies and I use an AAC app when I have trouble speaking and I use HabitRPG to help with executive function issues."


From this I went to research what different resources are available to help those with autism: 
The App she uses is called Speech Assistant AAC.



Speech Assistant is an AAC app designed for people who are speech impaired, but are able to read. This may be in the case of aphasia, after a stroke, in case of vocal cord problems or other speech problems. The app can also be a tool to practice during rehabilitation. With the app you can create categories, words and phrases, which are placed on large buttons. With these buttons you can create messages that can be shown or spoken.



https://play.google.com/store/apps/details?id=nl.asoft.speechassistant&hl=en



This App is a brilliant resource for those who are non verbal or perhaps experience a time where they find it difficult to talk. This is also similar to what was mentioned about being able to draw and write too, being able to talk through a visual aid is much easier and more comforting than speaking for an autistic person. 
It was also mentioned that stim toys helped her to relax, I have heard of stimming but wasn't sure what it meant so researched into the different types of behaviours normally associated with someone who has autism. 



'Stereotypy, or self-stimulatory behavior, refers to repetitive body movements or repetitive movement of objects. This behavior is common in many individuals with developmental disabilities; however, it appears to be more common in autism. In fact, if a person with another developmental disability exhibits a form of self-stimulatory behavior, often the person is also labelled as having autistic characteristics. Stereotypy can involve any one or all senses. We have listed the five major senses and some examples of stereotypy.'





SENSE STEREOTYPIC BEHAVIORS



Visual: staring at lights, repetitive blinking, moving fingers in front of the eyes, hand-flapping 



Auditory: tapping ears, snapping fingers, making vocal sounds 



Tactile: rubbing the skin with one's hands or with another object, scratching 


Vestibular (sense of balance): rocking front to back, rocking side-to-side 

Taste: placing body parts or objects in one's mouth, licking objects 

Smell: smelling objects, sniffing people.



WHY DOES STIMMING, OR SELF-STIMULATION HAPPEN?

Researchers have suggested various reasons for why a person may engage in stereotypic behaviors. One set of theories suggests that these behaviors provide the person with sensory stimulation (i.e., the person's sense is hyposensitive). Due to some dysfunctional system in the brain or periphery, the body craves stimulation; and thus, the person engages in these behaviors to excite or arouse the nervous system. One specific theory states that these behaviors release beta-endorphins in the body (endogeneous opiate-like substances) and provides the person with some form of internal pleasure.

Another set of theories states that these behaviors are exhibited to calm a person (i.e., the person's sense is hypersensitive). That is, the environment is too stimulating and the person is in a state of sensory-overload. As a result, the individual engages in these behaviors to block-out the over-stimulating environment; and his/her attention becomes focused inwardly.

Researchers have also shown that stereotypic behaviors interfere with attention and learning. Interestingly, these behaviors are often effective positive reinforcers if a person is allowed to engage in these behaviors after completing a task.

http://www.autism-help.org/behavior-stimming-autism.htm

Now I have a further understanding of what stimming is I wanted to look at what products are already available for children. I came across an excellent online shop which offers different alternatives to direct a childs attention to stim in a certain way. These toys and activities provide comfort and mental stimulation internally which is definitely something I need to consider when moving onto the next part of my project. The young lady I spoke to previously spoke about having a weighted blanket which is similar to what a child might have as I do remember children often have a something which comforts them i.e. a blanket or a cuddly toy for example. 


http://www.autismshop.com/chewables-sensory-items/chewables-sensory-items-weighted-blankets-cushions/?sort_by=position&sort_order=asc


They also sell products which help prompt certain behaviours in children with autism as seen in this keyring above. They type is simple and clear to read with visual queues too. In products and items used to help people with autism the design seems to be incredibly colourful and visual because it allows the items to become interesting as a stimulus. So perhaps this could indicate a pathway in making a product which is useful for people especially children who are autistic.

This is also connected to another App which I was informed about:
HabitRPG

https://play.google.com/store/apps/details?id=com.ocdevel.habitrpg&hl=en_GB

This App allows for everyday tasks to become part of the game and the individual receives rewards for completing these tasks. It also allows for communication online between users and this app is commonly used by those with difficulty speaking- this therefore indicates that again written words are incredibly helpful and comforting. 
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