Monday, April 24, 2017

What Happens to Autistic People in Prison?

What happens to autistic people in prison? We spoke with Clare Hughes, the Criminal Justice Coordinator for the United Kingdom's National Autistic Society, about the unique experiences of and considerations for incarcerated autistic people. Clare has been leading on the NAS's work expanding its accreditation programme to police forces, prisons, and probation services. Note that while some discussed issues are UK-specific, many can be generalized.

caged
Photo © Dave Nakayama/Creative Commons license
[image: Prison cell bars, with the background cell itself slightly out of focus.]

Clare Hughes: We don’t know how many autistic people there are in prison in the UK: information about people diagnosed with autism isn’t collected routinely for the general population, let alone for prisoners, and many will be undiagnosed.

HM Young Offender Institution (YOI) and Prison at Feltham diagnose young people in the prison, if they are there long enough. In February 2016, they identified that 4.5% of their population had a diagnosis of autism, which they’d received either before or at the prison. It also requires main grade prison staff to refer prisoners they suspect are autistic.

From discussions I have had with prison governors, they don’t think that numbers of autistic prisoners are large, but the impact on the prison can be significant as they struggle to identify the best ways to support them. Some prisons are aware that autistic prisoners are spending—and often choosing to spend—extended periods in Care and Separation Units (segregation), as they are quieter environments, without contact with other prisoners.

The National Autistic Society is currently actively working with eight prisons, who have registered with Autism Accreditation. Autism Accreditation is a quality assurance programme that has been in existence for almost 25 years.

HM YOI Feltham in West London was the first prison to achieve Autism Accreditation in 2016, after we’d worked with them to develop the specialist Autism Accreditation Standards for prisons. We have since had over 30 prisons interested in Accreditation, following a letter recommending Autism Accreditation sent to all prisons in England and Wales by the then Minister for Prison, Probation and Rehabilitation, Andrew Selous MP. The Minister also asked us to look at developing accreditation standards for probation services which have done and these are currently being piloted. Following this work, we had police forces interested in the programme.

Thinking Person's Guide to Autism: Is there a sizable autistic population in UK prisons?

Autistic people can end up in the prison system, just like anyone else. Although the exact number of autistic people in prison isn’t known, in HMYOI Feltham in February last year, they represented 4.5% of the population. (Note this is an ever-changing figure, as people are released and others arrive.)

What is clear is that research has found that autistic people “represent some of the most vulnerable people in the offender population.”*

Prison governors have told me that, although the number of autistic prisoners isn’t high, they can have a significant impact on the prisons as staff struggle to identify the best ways to support them. Some of the prisons I have visited identify that autistic prisoners are spending, and even choosing to spend, extended periods in the Care and Separation Units (segregation), as they are quieter environments, without contact with other prisoners.

* Talbot, J (2008), No one knows: Prisoners Voices: Experiences of the criminal justice system by prisoners with learning disabilities and difficulties. London: Prison Reform Trust.

TPGA: Does the population the National Autistic Society works with include suspected but undiagnosed autistics?

Hughes: Our Autism Accreditation programme is designed to be beneficial for all autistic prisoners, whether they have a diagnosis or not. For a prison to be accredited, their staff will work with us to implement standards developed specifically for prisons across every area of their work, which will ultimately improve the identification and support of autistic prisoners. These changes include familiarising staff with autism, allowing autistic prisoners to use communal areas at quieter times and making reasonable adjustments to the building, such as creating areas with less clutter. The changes are all relatively straightforward but they can make a huge difference to the lives of prisoners and staff alike.

The development of the prison standards for Accreditation started in 2014 when the mental health team at HMYOI Feltham (run by Barnet, Enfield and Haringey Mental Health NHS Trust) asked if we would consider developing our existing Accreditation standards, which have been running for around 25 years. The prison had previously audited their mental health services against another audit tool, but felt that in order to provide the best outcomes for autistic prisoners, they required a specialist response and, most importantly, a whole-prison approach as autistic prisoners were affected by a wide range of issues, including the physical environment. We then worked together to develop standards relating to the custodial aspect of the prison, education mental health and primary care.

As part of this, we also looked at a thematic review that had been carried out by Her Majesty’s Inspectorate for Prisons and Probation in relation to the treatment of prisoners with learning disabilities and/or autism in the criminal justice system and incorporated their recommendations, particularly around improved communication, which will, of course, benefit to anyone with communication issues.

The then minister, Andrew Selous, heard about the work taking place at HMYOI Feltham and visited to learn more. Following his visit, he wrote to all prison governors across England and Wales, encouraging them to consider Autism Accreditation. Feltham has since become the first prison or YOI to be accredited, and the project last year won the Royal College of Speech and Language Therapists’ Sternberg Clinical Innovation Award. This was shared between project partners Barnet, Enfield and Haringey Mental Health NHS Trust (who provide the mental health services at the prison), the National Autistic Society (NAS), and HMYOI Feltham. We’ve also had another 30 prisons and YOIs contact us to express interest in Autism Accreditation and are currently working with eight of them, including Feltham.

TPGA: Do you know if the proportion of incarcerated autistics is similar in other countries?

Hughes: We are no aware of any definite prevalence data about any prison population, nor how this compares to the UK.

TPGA: Does being autistic affect one's chances of being incarcerated? If so, why?

Hughes: The vast majority of autistic people are law abiding and respect the rules of society. Indeed, in many cases, autistic people are unusually concerned to keep to the letter of the law.

But there are of course cases where autistic people, like anyone else, can commit a crime. There are also cases where someone's autism may have a bearing on their behaviour. For instance, autistic people can have difficulty understanding unwritten social rules or how the world works, which can leave them open to being taken advantage of by others (Autism Together have been running a campaign around this so-called mate crime).

Autistic people can also be misunderstood by professionals within the criminal justice system, which is something I’m trying to change in my work. There’s a tendency, particularly in relation to some serious crimes including terrorism and sexual offences, for criminal justice professionals to interpret ‘odd’ as ‘dangerous,’ which may bring autistic people into contact with the criminal justice system or to their behaviour being seen as more serious in its intent. For example, if someone commits an offence related to a special interest, they may speak about it in great depth and passion when asked, leading people to think they are cold and calculating. Likewise, many autistic people struggle with eye contact and this can be interpreted as having something to hide.

More and more professionals are starting to understand more about autism and the different ways autistic people may respond to situations. This should help prevent people’s behaviour being misinterpreted and lead to better responses to divert autistic people from offending, or improved programmes to help prevent further offending.

TPGA: What kind of problems do autistic people encounter in prison that tend to be specific to their disability?

Hughes: Autistic people can have extreme sensitivities to things like light and sound, so the often busy and loud prison environment can be a real challenge. Prisoners shout to other prisoners, prison officers shout to prisoners, prison officers shout to other officers, there is the sounds of keys jangling, heavy cell doors being banged, an almost constant smell of cleaning products, strong smell of food at mealtimes, and minimal natural light. All of these can be incredibly challenging for autistic people, especially as there’s nowhere to retreat to.

However, there are other elements of prison that work well for autistic prisoners, who can struggle with change and seek out routine. Prison life is very structured and fairly predictable, with everyone receiving a set of rules when they arrive and seeing the same faces each day. But a sudden break to this routine, can be really hard for autistic prisoners. For instance, if there’s an unannounced cell search or an incident.

Rules aren’t always adhered to as rigorously as some autistic people would like to see and there are times when they may become confrontational with others about this. It’s a unique experience to have written rules of what is expected of you and others and, understandably, it’s really difficult for autistic people where others don’t stick to these rules.

There are ways to help autistic prisoners to cope with these challenges, which is something we make clear in our Autism Accreditation work. Some prisons are beginning to provide information to prisoners explaining that these sudden disruptions can happen, what the process will be before, during and after, and why staff will be unable to tell them when and why this is happening. There will still be autistic people who will be very anxious about this, but their anxiety will be reduced by having prior knowledge that this kind of thing happens and what the process is and, wherever possible, trained staff who understand how challenging this is for them.

TPGA: Are there some situations in which autistic prisoners' experiences are, relatively, not entirely negative, with regards to providing routine, etc?

Hughes: There are elements of prison that work well for autistic prisoners. Prison life is structured and fairly predictable, with everyone receiving a set of rules when they arrive and seeing the same faces each day.

I’ve also seen first-hand how understanding and support from prison officers and staff can transform the lives of autistic prisoners. For instance, there was an autistic man, who also had OCD and ADHD, in one of the prisons that I worked in. When he arrived, staff didn’t fully understand what any of those acronyms meant, but they knew that he was vulnerable. They provided a support system around him made up of other prisoners and prison officers and saw a real change in his behaviour. The autistic man even said that prison had been the best thing that had happened to him. I have met some incredibly passionate prison officers who want to learn more about autism and the best strategies for supporting people in the prisons that they work in.

TPGA: Do you see many cases in the UK similar to that of African-American autistic Neli Latson, whose arrest and incarceration were largely due to lack of supports and understanding about autism?

Hughes: This is a really shocking case. While it’s in the US, which has a different criminal justice system to the UK, and we’re not aware of such a serious UK case, Neli Latson’s experiences do highlight how autistic people can get caught up in the criminal justice system and how misunderstandings around autism can escalate things. This, and other cases in the UK, demonstrate why it’s so important that the police and other criminal justice personnel have autism training. This would help them to understand the additional communication challenges faced by autistic people and how to prevent escalation.

The NAS has also got lots of information for autistic people and criminal justice professionals on our website, including tips and guides: http://www.autism.org.uk/cjp

TPGA: What kinds of practices and policies would you like to see change, for the well-being of the autistic people in question?

Hughes: The most important change would be to have autism training delivered as a matter of course to all staff working in the criminal justice system, from police and courts to prisons and probation.

We’ve shown how this can work, through our project at HMYOI Feltham and early work with police and probation services. A growing number of staff are also calling for this too as training has a significant impact on their ability to carry out their role. It’s important that each of the agencies share this information with one another too, so they can learn and spread best practice.

Quality standards like Autism Accreditation can also help ensure that there’s the best possible autism practice relevant to each criminal justice agency.

We also believe that there need to be more specialist programmes to divert autistic people from committing offences, sometimes unwittingly, and where they have offended, to prevent re-offending, which understand the particular motivations and communication styles of autistic people.

Monday, April 10, 2017

Hey Parents of Autistic Kids: Here Are Five Big, Avoidable Mistakes

Shannon Des Roches Rosa
www.squidalicious.com

Resting after a long hike. Photo © Shannon Des Roches Rosa
[image: White teen boy with short brown hair, seen from
behind, sitting on a hilltop bench overlooking an ocean.]
If you're the parent of an autistic kid, you probably get advice thrown at your head from every angle, all day long. You may even be all done with advice. And I hear you, because I am you.

But I also have had the great good fortune to be connected with some of the most insightful autistic and autism professionals and thinkers on this planet, who have transformed my parenting approach completely, and to the benefit of my teen son Leo, as well as myself. 



As I have become increasingly devoted to "learn from my mistakes, so you don't repeat my mistakes," here are five bonks I made during the early years of parenting my autistic son, and how you can avoid repeating my fails:

1) Focusing on Awareness Instead of Acceptance



Autism acceptance wasn't a thing in the American culture in which I was both raised and taught to parent. Americans tend to think of autism and disability as either other people's problems, The Worst Thing That Could Ever Happen to a Family, or grist for arguments that non-disabled people should appreciate their special non-disabled lives. Even respected progressive media outlets tend to take these stances. 



Parents like me are told we need to focus on building awareness, which means opening  other people's minds to the concept that autistic people like my son exist. Which would be fine, if awareness also came with the benefits of respect and understanding.  But it doesn't. "Awareness" lets people think it's OK say ignorant things like, "Oh, I heard you can cure autism with a bleach enema," or "I'm so sorry about your son's autism epidemic," or even "Aren't autistic people all violent psychopaths?"

Awareness underlies misunderstandings such as assuming autistic people are either all children, or remain children for life. Which then leads to autism efforts that neither include nor consult autistic people, plus parents or professionals feeling entitled to able-splain "what autism is really like" to ... autistic people. These too-common results are the opposite of helpful.

Awareness also doesn't prevent innocent autistic people like toy truck-holder Arnaldo Rios from being mistaken by police for a violent suicidal gunman, nor does it prevent autism professionals like Arnaldo's caregiver Charles Kinsey from being shot for trying to comfort an agitated autistic person while Black.

These are just a few of the reasons why parents need to work on autism acceptance, on helping not just our own selves but the whole damn world understand this truth: our autistic children have autistic traits that make them autistic, and they are also real human beings with real needs who deserve real respect. Real acceptance means supporting and accommodating our autistic kids without being hellbent on "fixing" them, and being conscious of “the law of expressed emotion,” as described in the recent Invisibilia podcast, The Problem With The Solution, that “our private thoughts about a person, our disappointment in them or even our wishes for them to get better, shoot out of us like lasers and can change their very insides.”



Acceptance means rejecting the idea that there's a "normal" child trapped inside your autistic child, for the sake of your child's health, heart, and soul—as well as your own. It is reasonable to want your child’s life to be easier, and work towards that. On building skills for better coping with people and situations that are rarely considerate of autistic needs. But if you have an autistic child, it isn't realistic or healthy to expect them to not be autistic.



2) Obsessing Over "Age-Appropriate" Interests

 

It should be fine and dandy for people to like what they like, as long as they're not hurting anyone. Unfortunately, when it comes to autism, things people really really like tend to be viewed solely through the lens of disability, if not pathology: what might be viewed in a non-autistic person as a passion becomes an "autistic special interest." And woe to the autistic person whose passions are seen as only appropriate for younger people!



This is part of that acceptance mindset again: parents need to jettison worries about autistic kids' interests being age-appropriate and focus on what, for your child, is happiness-appropriate. Otherwise, you'll not only make your child sad and possibly even miserable, but you could be destroying opportunities to connect with them. In the new movie Life, Animated, an autistic young man's love of animated Disney movies gave him scaffolding not only for making sense of and relating to the world, but provided him with scripts—functional echolalia—to communicate with his delighted family (who had been told by professionals that his echolalia served no purpose, grrr). 



With people like my son Leo, for whom speaking comes slowly and carefully, building language skills requires extended observation, absorption, and scripting. Sometimes he needs to practice hundreds or thousands of times before feeling comfortable trying new words, and watching familiar videos or scripts (and yes, even ones meant for younger kids) can help with that. My son says novel things about videos he’s watched thousands of times before, almost every day. Why would I tell him he can't watch what he loves, when his favorite videos continue to help him learn?



3) Making Everything Therapeutic. Even Fun Things.



I have been guilty of this in the past (and possibly in the paragraph directly above): making sure that everything in Leo's life has some sort of therapeutic value, instead of making sure he has space in his life for happiness and fun. I recently observed this type of "what is awesome for non-autistic people is therapeutic for autistic people because they are autistic" with Pokémon Go:
“A mum has described how Pokemon Go has helped her autistic son leave the house and socialise with other people for the first time. She hopes that the effects of the game will carry over into the rest of his life, with Ralphie becoming more social, less rigid and wanting to get outside. "We're letting him enjoy the game but we're also trying to help him learn he doesn't need the game in order to do those things," she said.” 
As parents, we need to be really careful to distinguish between "this thing is making my kid be the person I want them to be but they aren't," and "this thing is making my kid happy and making it easier to do things that are hard for them." Let your autistic kids have fun, people!



4) Assuming Speaking Is the Only Form of Legitimate Communication



This is an intense one. And one that makes me so sad. I hear from and read accounts from parents nearly every day, talking about their "non-verbal" kids, about how speech therapy never worked, about how they can't reach their kids and how it makes those parents so sad.



I'm guessing it makes their kids even sadder. Especially if their kids have never been given communication options other than oral speech. Because not only can everyone communicate (even if it's as basic as yes/no, or even just "no") when given the right tools to do so, many autistic people have motor planning or related disabilities that make it hard to speak or respond appropriately even if they understand everything being said to them.

So if your child needs communication support, be sure to press hard for alternative communication evaluation and options. If your local resources or school district don't know where to start, send them to the website PrAACtical AAC, which is dedicated to best practices for Augmentative and Alternative Communication (AAC) professionals, and which you should read through yourself for ideas.



5) Buying Into the Stereotype That Autistic Kids Aren’t Empathetic or Social 



It is extraordinarily damaging to treat autistic people as emotion-free, antisocial robots. As Louise Milligan writes in The Guardian,
"The idea that people on the autism spectrum don’t know or care about other people is offensive and wrong. It makes their ability to navigate a path through this world so very vexed. Let’s be very clear: how people with autism might appear in company and what they know or think about, or care about, are quite distinct things."
And this goes back to that Acceptance concept: If you understand that being with other people can be challenging for an autistic child because social cues are confusing, and the world is filled with “light, colors and noises so intense” that your child can't think let alone interact, then you're more likely to stop confusing inability to handle socialization under stressful circumstances with dislike for other people.

(Though, to be fair, as with non-autistic people, some autistic people do prefer their own company.)



What Can You Do? Just Keep Swimming.

How can you get it right? Well, I recommend acceptance, as you might suspect by this point. And learning from the parents in the movie Finding Dory. As Alice Wong writes, "[Dory's parents] Jenny and Charlie are like many parents of kids with disabilities:

"They worry about her future
"They teach her life skills that she will need
"They are protective about Dory and her safety (“Watch for the undertow!”)
"They show joy and love of Dory being Dory"

Some autistic people, as well as people with other disabilities, say Finding Dory is hard to watch, because they lived through and so deeply empathize with how other creatures shun and second-guess Dory, and condition Dory to constantly apologize for existing. But Dory's parents never wavered in their complete love and acceptance for her.

Be like Jenny and Charlie. Love your kid. Let your kid know you love them, and are on their side -- no matter how badly the rest of the world behaves. Let them know they can always depend on you, that you accept and adore them, and that anyone who doesn't automatically feel the same way just needs to catch up. Because if we all work hard enough on that acceptance thing ... maybe everyone else actually will catch up.

A version of this essay was previously published at www.BlogHer.com.

Friday, April 7, 2017

If Not ABA, Then What?

Sparrow R. Jones
www.unstrangemind.com

Family | Happy Birthday to Mammy
Photo © Aikawa Ke, Creative Commons license.
[image: Taiwanese mother and child playing together
in a sand box, and smiling for the camera.]
In the two and a half years since I published my essay on ABA therapy, and it was republished in the book The Real Experts, I have been asked this question more than any other: "You’ve convinced me to avoid compliance-based therapies ... but what else is there? We are not coping well in my house. What can we do?"

I have spent the last couple of years answering that question again and again, on an individual level. I knew I needed to write this essay answering that question, but life kept getting in the way. Still, the question kept coming, from people all over, and I knew I could put it off no longer. So here we are, dear reader, and I hope that I am able to offer you some help and hope with these words.

You are a parent who is struggling and feeling desperate, but you’re firm in your resolution to avoid subjecting your children to dog-training techniques and spirit-crushing compliance methods. So let’s talk about your alternatives for one of the most common situations in which families tend to end up bringing ABA into their lives: aggressive behavior.

“We’re afraid for our lives!” I’ve heard this from so many parents. Their children lash out and hurt others. The children grow older, bigger, and stronger and continue to lash out. The family fears for their lives. In some cases, the police get involved and the children end up with involuntary commitment, facing criminal charges, or even injured or killed in extreme cases.

No one wants this for their child! No family wants to be forced to choose between fear for their child and fear of their child. It’s small wonder that families end up choosing ABA, and medications that serve as “chemical straitjackets.” Situations can get scary fast, and families can feel helpless.

But there are many things you can do to keep everyone calm, keep situations from escalating, and even keep situations from happening at all. I am not going to re-invent the wheel here, because so much great advice has already been written and published on dealing with aggression. Instead, I’m going to curate the best advice I’ve seen online through the years. (That means this essay requires you to do a lot of extra outside reading, but it also means you are about to get so much more great advice than I could fit into the few thousand words of just one essay.)

I’d like to start with the excellent aggression checklist from We Are Like Your Child. It is a great list of things to consider about your child’s environment and health, in order to understand the source of the aggression.

I would like to add that the aggression will not always appear right next to the triggering event. What do I mean by that? Let me explain with an example. Maybe reports from school say that your child is well-behaved at school, but you are noticing a lot of aggression at home. You have examined all aspects of your home environment and just can’t figure out what is triggering the aggression. You’ve tried asking your child to help you figure out what’s wrong but they haven’t yet developed the ability to communicate the problem clearly.

It is possible that the aggression trigger isn’t happening in your home at all. Maybe there is bullying on the school bus, or maybe the school is using some of the techniques that you have been warned about in my ABA essay, or the We Are Like Your Child checklist.  Or maybe the trigger is something else entirely, but still something not in your home.

So why is your child or teen or young adult being so aggressive at home instead of in the place where the triggering problem is occurring? The answer: because your child feels safe at home.

The problem is like a flame under a boiler and the pressure is building in your child. But if letting that steam escape is too dangerous—say, for example, it leads to take downs, restraints, seclusion rooms, or worse—your child learns to hold the pressure in for self-protection. But there’s only so long a person can do that: as soon as it’s safe, the steam explodes out, in the form of aggressive behavior. This is why it is so important to look at every part of your child’s environment when you’re trying to figure out why aggressive behavior is happening.

Sometimes aggression is the only way your child has to communicate that something is wrong. ABA might be able to stop the aggression, yes. But at what cost? Do you want your child to be trained to put up with pain and abuse? Of course you don’t! That was a ridiculous question. But it comes with an obvious answer: don’t use behaviorism to train your child out of aggression. Ferret out the source of the aggression and remedy it. It might be something in the environment, it might be the way someone is treating your child, it might be a health issue your child is struggling with. Whatever it is, play detective. Figure it out and help your child.

In The Case For Backing The Frick Off at the blog Love Explosions, Beth Ryan explains why she advises reducing Autistic kids' therapies and interventions. For some people this will be counter-intuitive. Parents are usually encouraged to believe that more problems should be addressed with more therapies and interventions. But Beth suggests more accommodations and respect instead and I completely agree with her.

Beth talks about learning how to handle her daughter’s hair in ways that are less painful and more pleasant, thus reducing outbursts. ABA would work to train Beth’s daughter to put up with the pain and misery without complaint. Beth took the much simpler route of learning how to be more gentle and touch her daughter’s hair in ways that weren’t so painful and awful. “I spend a lot of time thinking about what sets Evie off in any way. And I try my very best to support her by accommodating her whenever I can.” It’s such a simple solution, really: figure out what sets someone off and avoid that.

Sometimes avoiding a trigger can be easy. Other times it can be quite involved. In my book, The ABCs of Autism Acceptance, I wrote about a parent whose Autistic daughter would have a meltdown if someone used the stove. Careful investigative work never revealed what it was about the stove that bothered the girl, so the family just stopped using it. They would cook using the microwave or crock pot, serve cold lunches like sandwiches and salads, or order delivery food. It was an unusual solution that required the entire family to adjust, but it worked and resulted in a happy and secure child who was not experiencing overwhelming anxiety leading to aggression.

When you accommodate your child, you may encounter resistance from family members, extended family, friends, neighbors, professionals. People might tell you that you are coddling your child or catering to them. Stand firm. Your child or teen or young adult is not misbehaving on purpose. They are trying to cope with a world that is a sensory nightmare, and anything you can do that increases their sense of stability and safety is a loving gift to them.

I hope you are beginning to see that the aggressive behavior is coming from something that is painful and difficult for your child. You want to stop the aggression because it frightens you, but you really want to stop the aggression because it is coming from a place of great suffering and you don’t want  your beloved child to suffer.

Beth has another really helpful essay on Love Explosions, Caregiver Burnout. She opens by explaining how much she hates that phrase, because it seems to imply that Autistic children are burdens that grind down their parents. But she also finds that incendiary phrase a great jumping-off point for discussing how her family have chosen to help everyone live together in harmony, feeling safe and loved.

Among the very valuable advice in Beth’s essay is the caution that everyone absolutely must get enough sleep. I have visited with Beth’s family, and saw exactly what Beth describes in her essay. Her daughter gets good sleep and Beth keeps a monitor turned on so that she can hear the moment her daughter is awake and ready for Beth to come help her get her day started. Being well-rested is crucial. I have watched other Autistics completely fall apart and end up hospitalized simply because they weren’t getting sufficient sleep to be able to self-regulate.

An important side note about health issues such as getting sufficient sleep, or addressing digestive troubles like heartburn, IBS, etc: you will run into doctors who try to tell you that it is hopeless to address your Autistic child’s physical issues and that you should just give up. I know because not only do so many parents tell me that they have had to fight with doctors in order to get their child’s health needs addressed, but I have had to fight with doctors as well to get my own needs met, despite being a fairly articulate adult. There is a bias in the medical community that you will find yourself up against, a bias that says that Autistics just suffer, we just cry, we just behave strangely for no reason, and we’re all like that and there’s nothing anyone can do about it.

You have never given up on your child.  Don’t let the doctor give up on your child either!

If your child needs help with sleep, pardon the pun but don’t rest until you get that help for them. If you suspect your child is experiencing heartburn, food allergies, digestive irritation, etc. keep the doctor on task until the problem is investigated and solved. A lot of aggressive behavior happens because it is impossible to self-regulate when exhausted or in pain.

I’d like to round this collection of information out with four articles by four different authors, previously published on Thinking Person’s Guide to Autism (TPGA). I consider TPGA a great resource for all sorts of needs, and the articles are written by a mix of parents, caring professionals, and Autistic adults, providing a rich and full view of Autistics and our needs throughout the lifespan.

In Autistic Insights on Meltdowns, Aggression, and Self-Injury, Brent White and Lindsey Anderson talk about important guidelines including staying calm, protecting the Autistic person who is in crisis, offering options, and slowing everything down. When someone else is being loud or aggressive it can be hard to stay calm, but it is so crucial. If you allow yourself to get anxious and emotional, too, it will amplify what is going on with your Autistic family member. If you can remain calm and slow and steady, you will be offering yourself as a rock of stability and safety that will help your child to bring themselves out of their stressful state of being more easily.

In Understanding Autism, Aggression, and Self-Injury: Medical Approaches and Best Support Practices, Dr, Clarissa Kripke offers sound advice based on her experience as a doctor and as a mother of an Autistic teen. You’re already familiar with much of her advice by now: look for medical causes for behavior changes, foster communication, help keep caregivers well-rested and supported with respite as needed. Something that is implied in Dr. Kripke’s essay but stated explicitly in Beth’s earlier essays is that respite is not just some kind of medical remedy meant to make life easier for a parent or other caregiver. Everyone in the family benefits from taking breaks from each other.  Your Autistic family members especially benefit from time apart.

So many Autistic people are “emotional sponges,” as Shannon Des Roches Rosa puts it. That phrase really resonates with me because I have used those exact words to describe myself, even long before I was informed that I am Autistic. Parenting is highly focused work that takes a lot out of a person. Parents—parents of all children with all neurologies—need to take breaks and have “me time” to rejuvenate and return to parenting refreshed and rested. But we Autistic emotional sponges also need time away from the intense emotional energies of others. Spending time with other family members besides parents, or other trusted adults, can be restful and renewing for Autistic children as well.

I also know families with more than one child who take time regularly to spend one-on-one time with each of their children, away from the other children in the family. This special fun time focused just one one child is very important, too. Brothers and sisters need breaks from each other.  Parents need breaks away from their partners, if they have them. Make sure everyone in your family is getting their needs met as far as special time with individual family members, “me time,” to be completely self-focused, and restful break time from the entire family. Togetherness helps a family grow in love, but sometimes too much togetherness can stunt that growth or even shatter a family apart.

Like previous essays mentioned in this essay, Dr. Kripke’s essay also talks about changing things in the environment that are triggering meltdowns, but adds advice about the differences between meltdowns and tantrums and suggestions about how to approach the two differently. A meltdown absolutely requires support and never punishment. Punishment is inappropriate for a tantrum as well, but the support looks completely different because a tantrum is an attempt to affect the behavior of others while a meltdown is an expression of complete overwhelm and is not driven by intentions of any sort.

The second half of Dr. Kripke’s essay is a marvelous capsule guide for surviving meltdowns.  You really must read this! Dr. Kripke offers concrete step-by-step instructions for developing and implementing an action plan to cope with aggressiveness that comes from overwhelming anxiety.  I can’t even begin to do it justice in a short summary. It is simply required reading for anyone who loves an Autistic person.  I can’t begin to express how valuable Dr. Kripke’s words are.

The last two essays came from a workshop on Autistic aggression and meltdowns and the third essay I recommend is from the same workshop as well. Shannon Des Roches Rosa provided an overview of the workshop's topics after introducing the three other speakers, and that overview is a valuable short essay in its own right—including some great checklists of things to look at in the environment that may be difficult for Autistic people to cope with. Many things on the list are obvious to us Autistics, but maybe not so obvious to the non-autistic people in our lives. Things like perfumes or flickering lights may be nearly invisible to most people but can be overwhelming sensory assaults for us.

The last essay I want to leave you with is by Brenda Rothman and is titled Adult Responses to Autistic Children Lead to Escalation or Calm. Brenda Rothman is exactly right when she decribes how adult response choices can either help keep a child calm, or escalate that child into meltdown. I can tell you that this is not just true with children: As an adult, people’s responses to my anxiety have thrown me headlong into full-blown meltdown, while calm responses have pulled me out of meltdown even after I passed the point of no return.

Do not underestimate the effect that your attitude and words have on your child.  I understand that if your child hits you and Brenda and I tell you that your response is what sets your child going even harder, or helps your child reel it back in and calm down, you might feel like we are “blaming the victim”—but Brenda explains so well in her essay why that is exactly the wrong way to approach Autistic aggression. You are not a victim. Your child’s aggression is not a personal attack.

Rothman reminds her readers that their children are not trying to hurt them. The children are disoriented, anxious, and suffering. If you think of yourself as a victim of your child, you will not be able to foster the sort of calm response your child needs to help them regain self-regulation and calm.

Brenda Rothman offers some excellent advice for how to stay calm, how to respond to your child in distress, and how to address aggression with grace and love. You don’t need ABA for your child’s aggression. In fact, ABA is only likely to “work” in these instances by increasing but suppressing your child’s level of trauma and suffering. Whatever caused your child to suffer so much that they lost control is still causing your child to suffer, but if the ABA has done what it set out to do, your child has lost the only channel of communication available to them for expressing their pain and suffering in hopes of getting help with their distress.

Don’t take away your child’s voice; take away their suffering. ABA is a cruel response to aggressive behavior. Meet that behavior with love, calm, support, and an investigative search for the source of your child’s struggle instead. Learn why your child is getting so stressed out that they are frightening the people around them, and help make your child’s life calmer, safer, and happier. That is what you were hoping ABA would do, but I am here to tell you that ABA cannot do that. It is your role as a loving parent and you don’t need a behaviorist. You just need the love and compassion you already have for your beautiful child. Dealing with aggression really is a situation in life where love conquers all. Go forth now and vanquish suffering with curiosity, compassion, and calmness.

Tuesday, April 4, 2017

Eleven Ways You Can Make Your Autistic Child's Life Easier

Shannon Des Roches Rosa
www.squidalicious.com

Loving your autistic child with all your heart is a wonderful, precious experience. If you’re not autistic yourself, though, even the purest love can't always help you intuit how being autistic affects your child’s body, their senses, and how they interact with the world.

You don't want to inadvertently make your child's life harder than it has to be, so please consider the advice below—advice I’ve gleaned about autistic experiences, gathered during thirteen years of listening to autistic people, professionals, and parents. Some of these factors are common knowledge in autism communities and circles, but others are really not talked about enough, and every last one bears repeating.

Photo © Shannon Des Roches Rosa
[image: happy white boy with brown hair
singing, next to a large mossy boulder.]
If you want to do right by your autistic kid (or any autistic person, really), then please do your best to understand and respect these eleven factors about being autistic:

1) Processing Time: Almost every autistic person I know has their own rhythm and speed at which they process information. In my son's case, this means giving him a few beats to respond, rather than impatiently assuming he didn't understand what was said.

Other processing scenarios include relying on captioning for fully comprehending videos or movies—even for those who can hear—or needing to record and re-listen to lectures. Disregarding processing needs can lead to autistic people having their abilities or comprehension grossly underestimated.

2) Visual and Auditory Processing: Autistic people often process visual and audio input faster, or with greater intensity. Sometimes this means "super hearing," as in being able to detect—and act on—parents' whisperings about hidden cookies, from several rooms away.

Sometimes this means overhead lights flicker distractingly or painfully in ways non-autistic people don't notice. And sometimes, kids who can't screen out overwhelming sights or sounds on their own end up doing poorly or even melting down in classroom or other settings, because they're using all their energy to cope with torrential sensory input—instead of learning, or being able to communicate, or picking up on social cues and exchanges.

Providing noise-canceling headphones, using glasses with colored lenses, and using non-fluorescent lights are just a few options to make home and classroom environments more autistic-friendly.

3) Sensitivity to Barometric Pressure: I don't need to consult Weather.com or my Dark Sky app to know if rain is approaching, because my son will usually have already let me know that his head hurts due to the barometric pressure change. Many of my autistic friends have also reported being more sensitive to barometric pressure than their non-autistic peers; in some cases, the pressure change can even trigger migraines. So if your child gets distressed any time a storm comes in, consider that they may be in pain rather than scared, and take good care of them accordingly.

4) Undiagnosed Heartburn (or Other Medical Conditions): If your child has a hard time going to or staying asleep, or is going through an agitated patch in general, consider that they may have heartburn. Heartburn hurts like hell, gets worse upon lying down—and is usually easy to treat with over-the-counter meds (after a consultation with a doctor, of course).

Treating my son's heartburn has genuinely improved his ability to fall asleep, as well as his quality of life—and is but one example of how what is dismissed or assumed to be autistic "behavior" can actually be a reaction to an undiagnosed medical condition.

5) Stimming: Flapping hands, flicking a straw, chewing on a silicone tube, fiddling with hair—these are all examples of the kinds of "stimming" that can help autistic kids entertain themselves, regulate themselves, or cope with being overwhelmed—and which serve beneficial and legitimate purposes. But since stims can be perceived as odd or undesirable by non-autistic people, great effort is often put into blocking or "extinguishing" such stims (and not just in autistic kids, by the way—behavioral suppression is now also being used for kids with ADHD.)

Healthy or self-regulating stimming needs to be understood and accepted, and is different from repetitive self-injury, distress, or aggression.

6) Echolalia: Autistic kids will often repeat phrases, words, or scripts. Echolalia can be functional communication, similar to the way a subset of Gen X-ers considers lines from the movie Caddyshack perfectly acceptable responses during casual conversation. Echolalia can also be a form of verbal stimming: it can be reassuring and self-soothing to repeat phrases either to one's self, or in a call-and-response fashion with other people. Yet parents, teachers, and therapists often try to squelch or redirect autistic echolalia. If this attempted squelching happens, just say no. And then say it again!

7) A Serious Need for Chill Time: Autistic people get overwhelmed by the world. So when your kid comes home from school, an outing, or even after spending time with you, be sure to give them all the downtime they need. Give them space to process,  reintegrate themselves, stim, watch favorite videos—however they indicate to you that they best decompress.

This is especially crucial for our community's kids, as autistic kids tend to get highly scheduled, with therapies and other intensively socially activities that require more energy than is expected of non-autistic peers. Think about it: no kid whose energy reserves are completely drained is going to be at their best.

8) Face Blindness, or Prosopagnosia: Face blindness is a real thing for many autistic people, though its degree can vary. (Agnosia in general is an autistic thing, actually—difficulty differentiating between shapes, smells, buildings, individual cats.)

Try to help your child compensate: Teach them to recognize people by traits besides faces, and be aware of situations that may stress them out, like meeting up with friends or acquaintances, or recognizing teachers or aides. Help them come up with a strategy that works best for friends or family to approach them, like having the other person always say, “Hey, it’s me, [Name].”

9) Sensitivity to Tone of Voice: Autistic kids can be incredibly sensitive to other people's emotions, sometimes absorbing and even magnifying them. This means that keeping your tone of voice neutral or positive when speaking to your autistic child is a worthwhile effort. What you many consider a "firm" kind voice may be perceived as hurtful and angry by an autistic person who vibrates at a high emotional frequency, so do your best to practice a calm, comforting communication style with your child.

10) Simplify Their Space: People who get easily overwhelmed by visual and audio input, experience agnosia, and need processing and chill time often appreciate bedroom and classroom environments that are soothingly spare and uncluttered.

If your child has a difficult time creating or tending such a space on their own due to common autistic co-occuring attention, executive functioning, or other factors, then do your best to help them organize and maintain these spaces as they prefer.

11) Need for Respite: If your autistic child is indeed an emotional sponge, they will need period breaks from the primary emotion emitters in their lives—their family members. Do your best to make sure they get those breaks, however you can and however they desire—such as giving your child space, taking them for silent car rides, or having them spend time with a respite worker or other trusted, appreciated person who is not you. You'll both benefit.

Every autistic person is unique, which means these eleven factors may not ring true for every autistic person, even though these factors are all incredibly common. This list is also not meant to be comprehensive (please, add your own considerations in the comments).

Consider this a starting point, a check list, a mini-guide for parents to think about autistic matters and perspectives they may not have known about, and which may help them and their kids live the Best Lives Possible.

----

A version of this article was previously published at BlogHer.com

Monday, April 3, 2017

When You Are a Personal Assistant, and a Disabled Person Is Your Boss

Amanda Forest Vivian
adeepercountry.blogspot.com

I am a direct support worker, although there are many words for what I do. To people not involved in Disability World, I often describe my job by saying, "I take care of someone who is disabled." I don't really like to say this, but not everyone is coming from the same place and understands the same language.

My job title is Personal Assistant, which I like. I think direct support work should be viewed as assisting a person who is your boss, not taking care of someone passive.

It's important to keep in mind that there isn't one way to be a support worker. At one point, I was steeped in a certain view of support which was that it was totally inappropriate for support workers and their bosses to be close friends. A worker should just be like a robot that brushes your teeth, puts your shoes on, and transfers you from stair lift to wheelchair. This concept not only was alienating to me, but it just didn't fit with how my jobs were. Sometimes a client obviously saw me as a friend and I felt the same, and it would be weird to insist otherwise. People have different preferences about how professional a relationship they want to have with their staff; and for some people, it just makes sense that if you spend so much time with someone, you will be genuine friends. Other people don't want that. Either way, it should be based on the preferences of the client and the worker, not an abstract idea of what their relationship should be.

My boss is a twentysomething severely disabled girl who I consider my best friend and sister. We have spent most of our time together for more than four years, and to me it just seems appropriate to use these words. Several years ago I would have thought this was politically incorrect, but oh well—here we are!

However, despite feeling like Anna is my sister, I still see her as my boss first when I am on the clock. A friend or family relationship with a boss should never supersede the fact that they are your boss. Here are what I see as some common pitfalls of support work, where workers don't view the relationship appropriately:

1. Acting like a friend/family member when the client doesn't see you that way. You are an assistant, unless the client shows or tells you that they want a more personal relationship.

2. Acting like a friend/family member when you don't see yourself that way. Once when I was talking about this on Facebook, someone described how people they knew had staff who presented as friends and who the client saw as friends, and how hurtful it was for the client when the "friends" would suddenly disappear from their life. (I don't remember who said this but if you did, stand up and be credited!)

A friend comes to your birthday party even if they are not scheduled to work for you. A friend doesn't abruptly disappear if they leave their job—they tell you they're leaving and still make time to see you! Staff I know who are actually friends with their client still visit and meet up with them if they leave their job, because they enjoy their company. It's fine not to want an extra-work relationship, but you are not friends if you don't treat your client like you treat your other friends.

3. Using the word 'friend' as a euphemism. "I'm Andre's new friend! We hang out from 8 am to 8 pm on Mondays, Tuesdays, and Wednesdays!" Well, that's a pretty strict schedule for two friends to "hang out," especially if they just met each other. Would the world implode if you said, "I'm Andre's new aide and these are the times I work for him?" It's not shameful that Andre has a support worker and besides, it's obvious you work for him, so why not just say it instead of talking around it?

This also leads to some truly ridiculous sentences. I once heard a new staff say to her client, "Do you need help in the bathroom? I wouldn't be a very nice friend if I forgot to ask that!" It would be a totally normal question if she said "good staff person" instead of "nice friend" but as it is—well, that's a very weird definition of friendship!

4. Telling your boss how to live their life. If I never hear another 30-year-old staff telling their 60-year-old client what they should be talking about, doing, buying, or eating, it will be too soon. It's particularly striking with the age discrepancy, but it's never appropriate. Being a direct support worker is a position of service, not authority. If you were a personal assistant to a businessman, a politician, or a Lady Who Lunches, you'd help them do what they wanted to do. Being a PA to a disabled person is no different.

I'll confess, in my job I sometimes break this rule. My boss Anna loves to play with leaves, so she rips them off plants; and she also will knock over any glasses or cups that are near her (I don't know why). I stop her from doing these things even though it may not be in compliance with my idea of how a PA should act. I may not be able to make an argument for this exception, but it's just common sense. People have a right not to get their potted plants yanked over or their glasses broken, and Anna can go more places if she doesn't do these things.

5. Just doing whatever you feel like. Some PAs really don't get that even if someone is developmentally disabled, or especially if they're nonverbal, they're still your boss. Just because they can't say "I want to go to a movie" doesn't mean it's okay to take them with you when you go to IKEA and make them sit around while you pick out furniture for yourself. It might be okay to meet up with a friend of yours if you actually think your boss would like them and you're including them in the conversation, but it sucks to just haul your boss around like they are your extra purse while you hang out with other people and ignore them. It's nonsense. This is the ice cream of jobs, if you get along with your boss—all you have to do is spend time with someone cool, and help them with things. This is a job? Doing it properly is the easiest thing ever so I don't understand why someone would be like, "Wait, this job is still too much like a job, I'm going to do my grocery shopping instead of working."

I mean, aside from how stupid this is, it's pretty evil. How would you feel if you spent your days being treated like an object who is ignored and whose preferences and opinions don't matter? If your boss doesn't seem to mind, this is probably a sign of how fucked up their life has been so far—a pattern you are continuing.

Obviously if you work for someone like my boss who doesn't really have a reliable communication system, the person can't just say what they want to do. So in focusing on their wishes, you have to rely on activities you know they like; talk to them about activities and see if they look happy and interested; and try introducing them to new activities to see if they like it.

I used to have to struggle to get my boss out of bed to do things. For whatever reason, this doesn't really happen anymore. I don't know exactly why—because we know each other better now? Because we are older? Because she was just out of school and getting used to a more unstructured adult life? Even though I knew she would be happier if she went out and had adventures, I had mixed feelings about pushing her to get up when she didn't seem to want to. But now, if she's not sick, she seems ready to get up and go somewhere.

7. Not respecting your boss's privacy. If you don't understand why you shouldn't tell your boss's friends and acquaintances about bathroom things, then I don't know what to tell you. Would you like it if you used a catheter and someone told everyone about it while you were sitting there unable to stop them? Somehow, some people get the impression that disabled people's private business doesn't belong to them, it belongs to the person who helps them with it. It doesn't. Even if you literally have to take them to change their catheter bag right now, present company doesn't need you to describe exactly why you are leaving. It's rude.

Privacy applies to all subjects of course. One time, thinking it was funny, a staff told me her client had a crush on me. The client was someone I saw regularly and was friendly with. Come on—would you ever want someone to tell a friendly acquaintance that you had a crush on them, potentially making your interactions really awkward? Of course not. We all might have to contend with this from bullies and embarrassing family members, but if it's your job to support someone in the community, then you shouldn't actively cause problems in their social life.

8. Hogging your boss. This is a self-directed complaint. I am always hovering around Anna because a) she's my favorite, and b) I want to be around if she needs help. In groups, I'm trying to learn to sit apart from her and give her time to be alone or relate with other people, while still being aware of things she might need.

End of list.

I also have to register that unlike many other bosses, the person I'm calling your boss may not be able to fire you. They should be able to, but if they aren't making the direct choice, the family member, agency, or program that is employing you may not care about their opinion. This unjust circumstance doesn't mean that you shouldn't treat your client as your boss as much as possible. Neither does the fact that they may not be able to express their opinion, either because of their disability or because you're the best of a bad bunch and they don't want to end up with someone worse.

I feel like most of my opinions come from two principles: 1) treat your boss like any other boss; 2) treat your boss as you would want to be treated. I kept finding myself writing, "How would you feel if...?" Many times, support workers do not put themselves in their boss's shoes.

Anyway, like I said this is the ice cream of jobs, so just have fun, pay attention, and be considerate. I feel lucky that instead of sitting at a desk, I get to explore life at the right hand—or rather the left hand—of the coolest person I know.

[Image is a photo of Anna walking along a boardwalk and 
Amanda walking behind her,
holding her left hand to stabilize her.
]
I also want to link to Mel Baggs's staff tag and to Dave Hingsburger's blog. I'm really glad to have been reading them for most of my working life, so that even if people around me didn't encourage me to think about all these things, I still knew I should.

Saturday, April 1, 2017

Autism Acceptance Day & Month: Do This, Not That

Second Life: Porcupine: Autistic Liberation Front: Rainbow Cloud Panels
Rainbow Clouds by RoseFireRisingCreative Commons License
[image: Second Life screenshot: panels of clouds joined
by a central axis, with each a different color of the rainbow.]
Welcome to April, that wonderful month of northern hemisphere spring blossoms, less wonderful seasonal allergy attacks—and "Autism Awareness."

Here at TPGA, we have a long tradition of skepticism about Autism Awareness material. We are not being party-poopers; we focus on Autism Acceptance instead. Why? As we noted last year: "Acceptance means autistic people matter. Awareness just means we know autistic people exist."

We realize many who agitate for autism "awareness" are sincerely trying to do good work. But too many people hijack April to spread negative messages about autistic people, or claim that acceptance is about "complacency," while others co-opt language that makes them look like they're on the side of autistic people: The chest-beating gorilla of autism awareness, Autism Speaks, is making their April efforts this year about "understanding and acceptance of people with autism across the spectrum and throughout the lifespan."

Autism Speaks changing messaging in a positive direction is not the same as changing actions; after all, they just sent out an email stating:
"Fulfilling a promise made in 2016 by Donald Trump to the late Suzanne Wright, co-founder of Autism Speaks, the White House will join hundreds of iconic landmarks around the globe to Light It Up Blue on April 2, 2017 in honor of World Autism Awareness Day."
This announcement is distressing in several different ways—including that the current U.S. President has a history of saying hurtful, ignorant things about autistic people—so we remain highly skeptical of Autism Speaks's dedication to the interests of autistic people themselves. (Update: The Autistic Self Advocacy Network has officially condemned the President's "regressive" 2017 Autism Proclamation.)

Still, since our first and foremost goal is to encourage critical thinking on autism matters, we do need to be careful about instantly condemning those who support autism awareness. Remember to ask yourself: are they honestly working for the betterment of autistic people, or are they demeaning autistic people by using them as piteous props? If it's the former, carry on; if it's the latter, avoid or speak out whenever you can.

And now, some guidelines for honoring and supporting autism acceptance both tomorrow on World Autism Acceptance Day, and all month long:

What are some criteria for evaluating whether autism articles and efforts benefit, rather than harm, autistic people? Read closely, and make sure they:
Where to look for guidance, and good information:
If you have money, do not give it to organizations that harm autistic people. Find a useful local organization to support, or:
If you have time, avoid Autism Speaks walks and other purely "awareness"-raising events. Spend time supporting autism acceptance instead:
  • Sign the Autism Acceptance Month pledge
  • Devote time to to listen to autistic voices, such as our Autism Acceptance series of interviews and articles from 20162014, and 2012.
  • Share how major cultural influencers like Apple are choosing to honor Autism Acceptance
  • Boost autism acceptance-oriented material: on FB, Twitter, and other social media (as we will be doing), and share them on email with your friends
  • Comment on articles that misrepresent autistic people. Be polite and matter-of-fact but direct. Do not make or respond to personal attacks.
  • Call your local political representatives about autism-oriented matters; if you have the bandwidth, tell them you will be a resource for them.
  • Volunteer: ask local special education and disability-oriented schools what they need, on a one-time or ongoing basis.
  • Mentor: There is a real need for both autistic people and families new to autism to have good guidance. This is especially true for speakers of languages other than English. Contact your local family support or autistic organization for more information.
  • Ask friends to donate to the organizations or do the acts above.
We'll be devoting our April to autism reporting and resource sharing that makes a difference, so do check back in. And thank you for supporting Autism Acceptance.

How Apple Is Honoring World Autism Acceptance Day and Month

How excellent to see major cultural influencers like Apple honor Autism Acceptance during April, like this an Apple announcement about the month's strategy and events, and descriptions of the apps in their Autism Acceptance Collection—including some excellent app discounts:

From Apple:

Sunday, April 2 is annual World Autism Acceptance Day, which kicks off Autism Acceptance Month. One in 68 U.S. children has been identified with autism spectrum disorder (ASD) according to the CDC. Since we introduced iPad in 2010, we’ve heard from many parents, children, adults and therapists that iPad has been a key communication tool for Autistic people. And there are now some wonderful apps for Apple Watch as well, such as Proloquo4Text which now not only offers the ability to show your message to your communication partner, but version 3.1 also allows you to speak the message aloud right from your Apple Watch.

But perhaps even more moving is the personal stories from parents, therapists, as well as the dedicated app developers who are creating amazing apps that are helping.

New Field Trips at Apple Stores


Starting in April, Apple stores will offer two new Field Trip sessions globally with a powerful, fun and inclusive music interface for iPad that opens up a world of music to everyone: Storytime with Skoog and Rock Out with Skoog. Skoog is an accessible, tactile cube that makes musical and social interactions fun and inspiring:

Introducing the wireless Skoog. Music for everyone.
[video description: young white girl using the tactile, musical cube Skoog.]

During Field Trip sessions, teachers and students will participate in a creative, collaborative, and memorable learning experience which is inclusive of children with disabilities. These sessions are simple, intuitive, and keep kids engaged—while giving them the confidence to express themselves.

Parents and teachers or anyone interested in learning more can reach out to their local Apple Store and request a Skoog Field Trip at www.apple.com/retail/fieldtrip. These new sessions are in addition to accessibility workshops already offered globally, covering vision, hearing, physical motor, and literacy and learning topics.

Autism Acceptance App Collection


Explore our updated Autism Acceptance collection on the App Store, as well as iBooks and podcasts, including some great AAC apps like Proloquo2Go which help non-verbal children and adults communicate. With more 2.2 million apps in the App Store—and 1.3 million native to iPad—there are many wonderful apps to explore, and several of these developers are offering significant discounts on their apps during the month of April to help people get started.


Communication/AAC Apps

[Image: Proloquo2Go symbol/text-
to-speech iPad interface]
Proloquo2Go: available on iPhone, iPad, iPod touch and Apple Watch

The go-to award-winning symbol supported communication app, provides a voice to over 150K individuals who need an alternative way to speak. New features in version 5.0 include a new search feature, automatic backups, and progressive language feature. Provides more than 60 natural sounding text-to-speech voices including children’s voices and including children’s voices and American, Australian, British, French and full bilingual American Spanish children's voices.

(50% discount on Proloquo2Go April 2 - 4).

[image: Proloquo4Text
text-to-speech Apple
Watch interface, reading
"Double espresso, black,
no sugar. Thank you.]
Proloquo4Text: available on iPhone, iPad, iPod touch and Apple Watch
Proloquo4Text is a text‑based communication app that gives a voice to people who need an alternative way to speak. New features included Text to Speech on Apple Watch, which now not only offers the ability to show your message to your communication partner, version 3.1 also allows you to speak the message aloud right from your Apple Watch.

(50% discount on Proloquo4Text April 2 - 4).








[image: a person using the :prose swipe-
to speech interface on an iPhone.]
:prose: available on iPhone, iPad, iPod touch and Apple Watch

:prose is an intuitive gesture powered AAC app that enables users to speak and display phrases aloud with gestures as simple as a single tap or swipe.

(Save $100 for the month of April or 85% off/$100 value, offer ends April 30)




[image: aacorn AAC's predictive
"word tree" iPad interface.]
aacorn AAC: available on iPad

aacorn has added over 7000 core vocabulary words and aims to strengthen your child’s vocabulary knowledge by applying an innovative visual interface called the Word Tree to create word choice and branching pathways, offering predictions for the next word in a sentence. By emphasizing the relationships between words, aacorn helps reinforce essential language skills.

(50% discount for the month of April)

Avaz Pro - AAC App for Autism: available on iPhone, iPad and iPod touch

Avaz Pro allows users to drag and rearrange picture tiles into sentences, which the app then converts into a perfectly grammatical English text sentence. Users can explore tenses, sentence forms, parts of speech, and other grammatical properties in a visual atmosphere.

[image: Keeble accessible keyboard
iPad interface.]
Keeble: available for iPhone, iPad and iPod touch
Keeble is an accessible keyboard for iOS. Keeble allows students and adults with physical or vision impairments to type in any app. It has many customization options to tailor to the needs of the individual user.

(50% discount on Keeble April 2 to April 4).



Assistive Express: available for iPhone, iPad and iPod touch

Assistive Express is designed to be simple and efficient, allowing users to express their views and thoughts in the most express manner, with natural sounding voices. It provides word predicting to minimize the keystrokes required for users, and features a "favorites" list to quickly access users’ most-used phrases.


Social Skills/Life Skills

Autism Core Skills: available on iPad
Autism Core Skills offers both academic and social skill development tools for autistic children in preschool through first grade, including customizable themes like animals, trains and sports to help make the learning process fun and engaging. Available in 24 languages, the app strives to ensure each child with autism reaches their full potential.

[image: The opening screen of the Children With Autism:
A Visual Schedule app, on the Apple Watch.]
Children With Autism: A Visual Schedule: available on iPhone and Apple Watch

"A Visual Schedule" is the first wearable picture-based scheduler designed with children and adults with autism in mind. It has an easy to understand icon and progress bar, to help empower people to independently keep track of scheduled activities. (Visual schedules are supports that allow children and adults with autism and related disabilities to better handle transitions in their daily routines.) When used on the iPhone, this app makes creating and managing events and tasks a snap.

(Children with Autism: A Visual Schedule will be discounted April 1 - 8 to support Autism Awareness Day.)

Kid in Story: available on iPad
[image: Screen shot from a custom
Kid in Story tale, featuring a young
white girl wearing glasses, roaring
at a Balrog from Lord of the Rings.]
Kid in Story was specifically designed to benefit children with autism and other special needs by making it fun and easy to create visual stories to support learning, social modeling, and early literacy.

(Kid In Story Book Maker will be discounted April 1-8 to support Autism Awareness Day)






[image: Pictello's iPad interface,
featuring a smiling young white
girl under text reading "Julia
discovers gelato," with "discovers"
highlighted in green.]
Pictello: available on iPhone, iPad, iPod touch

Pictello is a simple way to create talking photo albums and talking books. Each page in a Pictello Story can contain a picture, up to five lines of text, and a recorded sound or text-to-speech using high-quality voices.

(50% discount on Pictello April 2 to April 4).





Choiceworks: available on iPhone, iPad, iPod touch

Choiceworks helps users manage daily routines, and encourages patience and managing emotions.

[image: Screenshot of a Flummox and
Friends video, of a social exchange
between an introverted white man
and an extroverted white woman.]
FlummoxVision: available on iPad

Flummox and Friends is a free, offbeat, live-action comedy designed to help elementary school children (ages 6 - 12) navigate the social and emotional world.








Games, Play and Music

Hopster: available on iPhone, iPad and iPod touch

Hopster offers on-the-go games for preschoolers to help build essential skill development in memory, literary, mathematics and more. The app's latest update, set to go live April 2, also includes a digital playroom hub called Sense, aimed to help kids—particularly those with autism—sharpen their sensory processing skills, and is focused on accepting and tolerating differences.

[image: Collage of characters from the
Toca Band app, overlaid with black
text in a white oval, reading, "Each
character is a unique musical toy."]
Toca Box for Autism Awareness: available on iPhone, iPad, and iPod touch

Toca Boca will be running a special bundle from April to the end of May called “Toca Box for Autism Awareness,” which includes Toca Store, Toca Hair Salon, Toca Life: Town and Toca Band, for $5.99.







Injini: Child Development Game Suite : available on iPad

Collection of learning games that offers meaningful play to young children with cognitive, language, and fine motor delays.

Skoog: available on iPhone, iPad and iPod Touch

The Skoogmusic Skoog 2.0 Tactile Musical Interface is a tactile cube that enables children with disabilities experiment with music-making without having to pick up an instrument. In combination with the Skoog app and GarageBand, Skoog lets kids press and squeeze the cube to obtain acoustic feedback that plays on an iPad.

Bloom HD: available on iPad

Bloom HD makes music creation accessible to all—combining instrument and composition capabilities to allow users to easily create patterns and melodies with the touch of a screen.

[image: screenshot from the app
Motion Math: Pizza!, featuring a pizza,
ingredient bins in a right-hand column,
above yellow text in a blue bar,
reading "Design your masterpiece"]
Motion Math: Pizza!: available in iPhone, iPad, iPod touch

Learn economics and mental math as you buy ingredients, design pizzas, set prices, and serve customers in this delightfully delicious simulation game.