Au-thriving

23/04/2023

Dr. Nick Walker (2021) does a beautiful job of boiling down both, the pathology paradigm and the neurodiversity paradigms to 150 words or less:

In terms of discourse, research, and policy, the pathology paradigm asks, in essence, “what do we do about the problem of these people not being normal,” while the neurodiversity paradigm asks, “what do we do about the problem of these people being oppressed, marginalized, and/or poorly served and poorly accommodated by the prevailing culture?” (p.28)

Three tips to begin educating within the neurodiversity paradigm

Be willing to get to know your child as a whole human being that needs support and guidance to develop into their own. This means that you understand each person is on their own developmental path and you will appreciate their strengths and provide support when needed.
Be willing to listen, understand, and respect the goals your neurodivergent child has for themselves. No judgment here, goals will be very individual and it's our job to support, support, support. Remember there is no magic age at which a child should meet a certain milestone, always offer support and always give access. The child will learn when they are developmentally ready to do so. Rushing is a sign of operating within the pathology paradigm and a clear signal that you need to stop and reflect.
Teach children about the pathology and neurodiversity paradigm, even if they are neurotypical. It is important for neurodivergent children because it can drive self-acceptance and decrease shame. For neurotypical children, it is important to grow up as an ally and not an oppressor.

References

Walker, N. (2021). Comments on "Throw Away the Master´s Tools". In Neuroqueer heresies: Notes on the neurodiversity paradigm, autistic empowerment, and postnormal possibilities (p. 28). essay, Autonomous Press.

23/01/2023

I hear it often: “I wish my autistic child could _______ so they do not get left out, how can I get them to _______?” Wanting your child to be included is a great goal, but before you decide whether or not to teach your child a skill, remember that autistics and allistics (non-autistics) have different communication and connection styles. Most of the time, I see autistics learning the style of allistics, we are expected to do this in order to survive in the world as it is. On the other hand, allistics are not required to learn the autistic ways. This is a great example that illustrates the social model of disability, where a person is not inherently disabled. The way society is set up disables the individual who is built to function in a different way. Being aware that the requirement for additional effort is placed on the autistic person (which takes additional energy from the already low energy stores with which we struggle daily) and being aware of the level of unfairness that your child is being subjected to, is important. It allows you to empathize with their experience of the world.

Growing Up with Allistic Expectations

I was the child that was left out. Elementary school was particularly difficult for me because I engaged in autistic ways. I figured that if I got good enough at certain games, kids would line up to play with me. It did not occur to me that winning at games actually turned people off. I could only find one other kid to talk about dinosaurs, nobody was into mythology, and I never realized that the scripts I learned from TV shows were not the most age appropriate for elementary school conversation. I survived thanks to a few other children who included me out of being principled, because I went to school with a very close cousin, and because some children temporarily took me in as a pet project. We did not know I have been autistic all along, so the message was clear: It was my struggle, I was the one not measuring up, I had to stop being so weird, I had to tone it down. Everybody else was fine, it was my responsibility to adapt. This unspoken message is clear to autistics and it comes from everywhere.

So, what happened?

I did eventually find a nice group of kids who got me, but that would happen only a few years before school ended. One of them, I have come to call my sister. She has amazing people skills, so I still learn from her. For many autistic people, this may not happen until they find an interest group where they just seem to click with one or two people or when they are able to use online forums to connect with other autistics with their same interest.

The bottom line

Before deciding whether or not to teach your child a certain allistic skill, it is good to remember:
- Learning allistic skills can be a matter of safety for many autistics
- Your child will put in the extra effort that an allistic child will not
- They will spend additional energy that an allistic child will not
- A relationship that is formed while your child is practicing allistic skills (masking) is a relationship with your child´s mask, the person will not be appreciating your child, but their mask
- Maintaining friendships with allistics can be exhausting, autistic (or, at least, neurodivergent) friends are much needed
- Being aware of this can make a big difference on the expectations you pass on to your child (knowingly or not).

I leave you with a variation of a little saying making the rounds on social media: “Neurodivergent people tend to move in packs, like poorly emotionally regulated wolves. So, if all your friends are neurodivergent, I have some news for you.”

27/11/2022

Can you believe it? It is the end of the year and time for Au-thriving to take a break.
I wish you all a great holiday season if you celebrate end of the year holidays in your part of the world.
Over here, we stay home a lot, go to our families for big dinners (yummy!), and take time to see friends.
I will be giving thanks for how much our Au-thriving family grew in 2022 and getting energized to give you more Au-thrivng content in 2023.
If you have a pressing question, feel free to send a DM. I will make sure to find some time to answer.
See you in 2023!

13/11/2022

Today´s post is a response to a recent email consultation. Of course I do not want to overwhelm everyone, so I took the main ideas to share with you. But you are welcome to learn more at www.au-thriving.com

Therapy or no therapy?

The market is full of therapists offering help to autistic children. But choosing therapies, like every choice you make in parenting is highly personal.
This is why, Au-thriving teaches parents how to choose therapies. First, by deepening the knowledge of yourself and your parenting environment, then deepening the connection you have with your child, and lastly by learning to evaluate available services (if after the first two steps, you still see a need). For more details, you buy and download the replay to our August workshop for only $37 at www.au-thriving.com. In this workshop, I walk parents through each step of the selection process. During Au-thriving Academy, I help parents through the clarity, competence, and confidence they need to make big decisions through personalized coaching. Spots will open again in 2023.

Three therapy traps, and how to avoid them

1. Thinking: “If I do not have my child in therapy, I am a bad parent”

Due to the large amount of therapies in the market, parents may feel pressured to choose one in order to feel that they are doing their part as a parent to improve their child's quality of life. Don´t fall for this, if you are connected to yourself, your environment, and your child, they will show you or even ask for help in learning the skills they need in order to improve their lives. If your child is safe, communicating, and happy, ask yourself: do they need therapies at this moment? Use therapies to support your child's goals, not yours.

2. Act now, before it´s too late!

I am sure you have heard this: “The sooner the better!” “Don´t let the window of opportunity close on your child!” “Act now!” These phrases again, trigger the feeling in parents that they must enroll their child in therapies to be a good parent. Rest assured, the window of opportunity stays open throughout our lives. Follow your child's lead, be observant, choose what will support their development and growth.

3. This is the latest technology

Unfortunately, the latest technology or “treatment” will be just that. In addition, the price to pay for the latest is usually high and, to most of the world population, innaccessible. These therapies make it to the market without years of research and solid scientific backing. Some are harmless, some will turn out to be quite effective, some can even be painful/traumatic. If you have money to splurge, and the process you are considering seems simple, painless, quick, and supports your child in reaching their goals, then by all means…splurge. If not, skip it with a clean conscience.

Final thoughts

If you listen to what many autistic adults report, most of the time they will not speak fondly of the therapies they were subjected to as children. Some will even say that physical training and activities that supported them in developing their special interest had a more positive impact. At the same time, speech and language therapy that provides training in robust Alternative and Augmentative Communication can help your child strengthen communication, which all humans want. If your child is at risk of seriously harming themselves or having an accident due to lack of motor or sensory abilities, then look into therapies that will keep them from harm's way.
No two autistics are the same, no two have the same same needs. But it is safe to give you these two final pieces of advice: 1. Stay away from therapies that use rewards and punishments, always assume your child is capable and internally motivated. 2. Take your time to connect to yourself and your environment, deepen your connection with your child, and approach services with a critical lens.

Online autism courses for parents, teachers, and support teams of autistic individuals. Guidance through: what is autism, autism symptoms, communication, sensory processing issues, social skills, therapy options, advocacy, education, accommodations and adaptations.

06/11/2022

If you are new around here, I want to tell you a little about Au-thriving World.
Au-thriving World is autistic run and an autism positive teaching resource. This means that we work for acceptance, inclusion, and quality of life for all marginalized communities. This is because a society that is thought and designed for inclusion, is beneficial to everyone. We are not seeking to make autistics less autistic, but to help parents and their children overcome the challenges of living in a world that is not friendly to minorities in hope that one day the world will be a kinder place to live in. This means that we do not value speaking over other languages or ways of communication (writing, spelling, typing, signing, eye motions, repeating), that we recognize that eye contact is not a pre-requisite for good communication (and in the case of autistics may even be an obstacle in good communication), that we understand that autistic development is not linear and, some times, autistics temporarily or permanently loose skills we previously had. I could go on, but the main idea here is that we respect all people as whole, valuable people, regardless of their perceived contribution to society.
If you are a busy parent of an autistic child whose is attending an inclusive school, join our community, send us your questions, and learn with us. The best moment to start learning is as soon as possible and it is best when you learn from someone who has been there.
Join our mailing list at www.au-thriving.com and be the first one to read our Sunday posts and to know when our coaching groups are open.

Online autism courses for parents, teachers, and support teams of autistic individuals. Guidance through: what is autism, autism symptoms, communication, sensory processing issues, social skills, therapy options, advocacy, education, accommodations and adaptations.

30/10/2022

I am here to tell you you are not alone, although it may feel like it some times.
Parents of autistic children are often offered an all or nothing approach: you are either ableist and abusive (by having boundaries and seeking services that teach masking), or you are one hundred percent on board with the dominant voices in the autistic community and bend your life over backwards to cater to your autistic child´s every need, neither approach is realistic or nuanced enough.
The amount of contradicting information is overwhelming. Autistics will tell you one thing, professionals will tell you another, online resources vary in reliability, and other parents or professionals may not take time to empathize with you before making recommendations. Often this leaves advice (be it well-meaning) lacking applicability to your personal situation as each group has their own ideas about what is right. Each group dealing in absolutes, failing to see the struggles of the other side.
When I was going through the process of understanding my child´s diagnosis, and the best courses of action, I would have given anything to have the opportunity to be coached someone who got me!
So remember, if you have an autistic child attending an inclusive school, I got you. I have been there, I am still there, and I know what it´s like. You don´t have to do this alone.

23/10/2022

October 16-22 was Invisible Disabilities Week. Estimates around the web oscillate between 15-20% of the world population. However, if we really think about it, the amount of people living with invisible disabilities is unknown. Why?

People with invisible disabilities may not know they are disabled themselves and lack a diagnosis

Because diagnostic tools are not yet refined to the point they are able to identify highly masking individuals, many people with chronic pain or fatigue may think that their experience is not unlike that of everyone else.

Growing up with an undiagnosed invisible disability

The experience of growing up feeling different is widely shared by individuals with invisible disabilities.

Being disabled, does not mean you lack awareness of the world around you. It was clear to me, from early on, that other kids (especially girls) had this unwritten code that I could be lucky to crack one day. I knew I wasn´t “getting it” but I did not know why. I did not have words or an explanation. If I were an alien who had to pass “fitting in with humans” to graduate alien school, I would have been held back indefinitely. And that is how I felt: alien.

The blessing of diagnosis

Having a diagnosis allows individuals to explain their struggles. This may be why, if you know a person with an invisible disability, they may seem “more disabled” after diagnosis.

Imagine the burden of living disabled, but constantly try to rise up to non-disabled standards while not knowing you are disabled. Do I still push myself a bit more than I should? Many times, yes. But I am aware and working on this.

If you are a parent…

Be aware that your child may be struggling due to an invisible disability. If your child tells you or shows you they are struggling, pay attention. They need your guidance and support. Never tell them a struggle is imaginary, help them find out why they struggle.

If you are a professional…

Be aware that many children with whom you come in contact may struggle with an invisible disability. Again, never tell them a struggle is imaginary. Find ways to support them and their families. Observe, but do not judge.

Everyone in general…
Be kind. Remember people with hidden disabilities may or may not disclose for personal reasons and remember many are undiagnosed.

If you struggle with energy levels, pain, and fatigue day to day, you may be living with an invisible disability yourself. You are not broken.

16/10/2022

Communicating needs is tricky to many of us. As we are learning and getting better about communication as humans, we are discovering that: maybe we were told as children that expressing our needs was rude; that professionals know best; that we should be strong and not incommodate others by asking for help… You may have your own reason why you struggle asking to get your needs met. But here is the thing: situations and solutions where only one side of the equation is getting their needs met, are not sustainable. Sooner or later, the side of the equation that is not having their needs met will break.

If you relate with being unable to effectively express your needs or find yourself avoiding conflict at all costs, I want to share a resource with you. The book Nonviolent Communication, a language of life by Dr. Marshall B. Rosenberg contains instruction and exercises on communicating in a way that both sides of the equation get their needs met. It is not a quick fix, but then, what is?

How this book helped me as an autistic, autistic parent, and autistic inclusion coordinator

The general approach, detailed by Dr. Rosenberg consists of four steps (he calls them components): making observations (remember last week?), identifying feelings (this one is super difficult for me), identifying needs, making requests. It is no secret that many autistics rely on scripts for communication. Nonviolent communication (NVC) gave me the skills and scripts I needed to communicate empathy, willingness to cooperate, caring concern, and even sound professional if needed.

I still find it hard to disagree with others, especially in the moment (due to processing). But I have a tool that I can always refer to if I am in doubt and I have gotten pretty good at the empathy component. I use the components that work for me. Other parts of this approach (the feelings, for example) may or may not happen for me, but I can notice that there has been a big improvement since I started in the early 2000´s.

Communication tip of the day: When I have to choose, I focus on empathy and needs

“From the moment people begin talking about what they need, rather than what's wrong with one another, the possibility of finding ways to meet everybody´s needs is greatly increased.” (Rosenberg, 2015)

Practicing the empathy step/component, ensures that I understand what the person is saying and leaving out any assumptions or misunderstandings. Here, it is helpful to paraphrase what the other person has said, and asking clarifying questions.

Focusing on finding the need (mine and the other person´s), helps me remain focused and objective when trying to find a solution. It also gives both sides an opportunity to brainstorm what would make the situation better.

So next time you enter conflict with family or the team working with your child, focus on empathy and needs. What do I need? What does my child need? What do they need? Before walking into a meeting, be very clear on the first two. During the meeting, clarify the last one. Then, lead into finding solutions by asking: I wonder if we can find a way to (meet their need) and (meet your/your child´s need)?

Make this week great.

Reference
Rosenberg, M. B. (2015). Nonviolent communication: A language of life. PuddleDancer Press.

09/10/2022

For today´s Learning Sunday, I would like to share the first secret to great communication. Communicating with our family members and professionals who work with our children is a skill you must learn and practice in order to get the best possible outcomes for them. Facing professionals may feel intimidating. On the other hand, every family member seems to have an opinion about what is best for your child. It can be frustrating, and this is why you learn and practice before difficult situations or conflict arise. So, what can you do?

Listen, listen, listen

Many of us have been taught that being eloquent shows that we are knowledgeable. This leads to most people listening just enough so they can respond. This is OK if all you want is a surface level conversation, however, in a conflict situation, you need to listen with a different intent.

What are you listening for?

First, you need to really understand what the other person is trying to say. Keep in mind that many people are not great communicators and they tend to include their value judgments when all they are trying to do is help. Let's look at an example that very often comes up when dealing with autistic children concerning diet.

What many people will say: You only feed (child) junk, they are going to get sick!

Because most people will emit value judgments, which can make things sound hurtful to you (the #1 person trying their best to keep their child healthy and happy), you need to learn to ask clarifying questions. A good clarifying question will help you determine the person´s feeling and motivation behind what they have said.

In this particular case, a good clarifying question could be:
Are you feeling worried about (child´s) diet because you care for their health?

If you choose a clarifying question over answering to defend yourself because you felt judged as a bad parent, not only are you gaining clarity, you are also creating allyship between you and the family member or professional bringing up this concern.

Many times, we observe family or professionals approaching our children in ways that make us feel worried or anxious. So next week, we will learn a quick tip on phrasing our concerns to get family and professionals on board and collaborating with us. Can you already think of a way you could share the concern in the example with a professional in a way that strengthens your bond?

I hope that you will practice this quick listening tip and start facing conflict with compassion for yourself and others.