“No two brains are the same, and we celebrate that here at Reach. There’s a whole movement happening within the autism community, to move away from just awareness and to focus on acceptance, honoring people as they are. Moving beyond awareness that autism exists, into a mindset that values and celebrates it. At Reach we are committed to advocating alongside autistic individuals and families, so they feel safe, supported, and accepted for who they are.”– Amy Rich Crane, Executive Director
In years past, the color blue has been established as the staple for Autism Awareness in April, in association with Autism Speaks. More recently, the color red #WearRedInstead has been adopted by those in the autistic community as a way of creating change in the Autism Awareness movement. To these people, the color blue has a negative representation. Wearing red is their way of promoting acceptance rather than awareness, to celebrate differences, and to move away from the finding a ‘cure’ mentality.
At Reach for the Top Therapy, we honor autism as we provide trauma-informed, neurodiverse-affirming therapies for families in the Dover, NH area. Reach is on a continuous journey to do better than traditional models have in the past for the neurodiverse population as a whole. We commit to learning more, sharing that information and applying it, so that we may best support the unique needs of our children, friends, family, and community members who are autistic.
This journey started with gaining insight into the lived experiences and voices of Autistic adults. Which included inviting an Autistic Adult to share her experiences as a mother of two children receiving services with our staff. She provided valuable feedback and spoke up about ways that would better support her family in learning new strategies, emphasizing that what works for some families doesn’t work for all, and many neurodiverse might not feel comfortable communicating that. Ideas were generated, including more ways for therapists to provide information, and ways for families to participate in their child’s therapeutic journey. These changes improved this mother’s overall experience and began the conversation for how to identify needs and shape delivery to meet neurodiverse families where they are at for future families.
What is autism?
Autism, also known as Autism Spectrum Disorder (ASD), is considered a neurodevelopmental or brain-based difference, where the structures and connections in the brain are wired differently. Signs that a child or person are Autistic may be identified by their patterns of communication, socialization, sensory processing, and behavior. It is a spectrum disorder, and the characteristics and way they impact the person vary widely among individuals.
Given that every Autistic person is different, just as every non-autistic person is different, there is no way to group one way that autism presents. In an effort to educate others and capture the shift in how Reach views autism, we will share some examples. Autistic people have many strengths based on the way their brains work, strengths that others may miss or misunderstand. For example, with Autism, the part of the brain involved in visual processing is usually larger and has stronger connections. So noting details and learning visually is often a strength, when others’ instead focus on challenges with verbal and/or nonverbal communication, because it doesn’t align with the receiver’s expectations. Others may see repetitive behaviors or interests as distracting, when to the person they are helping them focus and engage by regulating an overwhelmed sensory system. They may have sensory processing needs that present as being sensitive to certain sounds, lights, textures, or smells. These differences are not inherently ‘bad’, but others’ reactions can signal that they are. Invalidating these very real sensitivities may sound like a parent, teacher, or community member saying “stop doing that”, “it’s not a big deal”, “you’re overreacting” or “don’t be so sensitive” which minimalizes their feelings. At Reach, we use a lens of curiosity to identify why the child acts in a certain way and then help the family and other caregivers in the child’s life understand the ‘why’ to further support the child.
Autism often manifests in early childhood and is usually diagnosed through behavioral evaluations and assessments. The focus of outpatient therapy at a neurodiverse affirming clinic like Reach, would be to help the child and family understand the child’s needs better, to get in-sync through play, find tools to help the child feel regulated for longer periods of time, help the child and family learn to advocate for the child’s needs and get them met across different settings, and to meet any goals the child and family may set for greater independence in areas like eating, dressing, communicating, and more remembering that it is going to look different for each child and family based on their needs, strengths, interests, and values.
What is the right language to use when talking about autism?
With the Autism Acceptance Movement, the preferred mindset at Reach, we use an identity-first approach, meaning that therapy clients are referred to as ‘autistic children’ or ‘autistic teenagers’, instead of children or teenagers with autism. By using identify first language, we validate Autism as part of who they are versus something they have, like it is an accessory. Additionally, using words like therapies and support, as opposed to treatments, adds to the positive acceptance message. Most in the community say autism “is part of who I am,” and it is not seen as something that’s wrong or needs to be fixed. Bottom line for best practice though, when in doubt, it is never a bad idea to ask the individual how they prefer to be addressed. “Keeping that communication open as people grow in their identity journey” – Amy Shaw, Neurodiversity Advocate and Mother.
Autism is a disability.
In the disability community, we commonly see neurotypicals (non-autistics) and the non-disabled shying away from the word disability because some associate it negatively. However, the disabled population is taking that word back and claiming it as “part of who I am.” More people are feeling comfortable self-identifying as a disabled person, advocating for their equal right to exist as themselves in the world. There is a lot of significance in these movements, in terms of how society treats people and Reach is committed to playing a supportive role in these movements, as it pertains to how we provide support when working with children with disabilities and their families.
“Actively advocating to end use of the color blue and the puzzle piece which signifies Autistics are puzzling and have missing pieces, many within the Autistic community have more recently adopted the rainbow infinity symbol to represent Autism. They believe because it is a spectrum, beautiful with lots of different colors representing how individualized and unique each person is. Autism is a part of someone, and should be as valued as any other part of their mind, body, and personality that makes them their unique self.”– Amy Rich Crane, Executive Director
How Reach addresses the individuals’ needs within the community
“Realizing that your child has needs you may not know how to meet, and the uncertainty surrounding finding the right strategies can be daunting. Which is why, at Reach our therapists are trained in some of the top affirming therapy strategies and models, are actively listening to Autistic voices and lived experiences, are committed to learning more to help families on their journey based on the child’s abilities, interest, and needs. Where the onus to change is not just the child’s responsibility, but a focus is put on how to shape the environment, increase access to support, and help their caregivers and the child understand their body and advocate for the child’s needs. At Reach we are focused on being a leader in the paradigm shift, with an emphasis on neurodiversity and satisfying the need within the Autistic community for affirming, individualized therapies.” – Amy Rich Crane, Executive Director
Traditional therapies generally use compliance-based methods to shape and train a person with disabilities to ‘fit’ the thought and behavior patterns of the neurotypical world. Despite behavioral-compliance approaches like Applied Behavioral Analysis (ABA) being well-researched and widely accepted in the medical community, Autistic autism researcher Henny Kupferstein (2018), found increased PTSD symptomatology in autistic individuals exposed to ABA. She is one of the academics favoring relationship-based interventions, and she focuses on music as a tool.
Accordingly, Reach strives to embrace a relationship-based model, looking at the interaction between parent and child, and their relationship with their environment, which can help determine what is and isn’t working.
For example, oftentimes the child’s responses to sensory stimuli aren’t fully understood by family members, which can create unwanted stress and anxiety for the entire household. Addressing issues like these and creating awareness around the needs of the child and other individuals in the household can have an incredibly positive impact on the day-to-day. When parenting any child, child development experts are looking at goodness of fit, how well the child’s temperament, strengths, needs, and preferences match the caregivers, and how in-sync or attuned the parent is in reading the child’s cues and needs, while then helping them meet them with the resources and skills they have. If there is a mismatch in needs or resources, we try to develop that with both the child’s and caregivers’ participation, understanding, and growth.
Reach therapists use affirming practices such as, the Learn Play Thrive Approach, the Developmental, Individual-Differences & Relationship (DIR floortime) and Social Communication, Emotional Regulation, and Transactional Supports (SCERTS), which promote trust and play-based strategies while capitalizing on their strengths.
“If you can build upon those skills intrinsically through play, engagement, trust, relationship, and fun, it has a much more powerful and positive connection in the brain. In addition, by using a variety of sensory toys, tools, and experiences, you enrich that learning further, activating more areas in the brain to make stronger connections quicker. We combine clinical experience, lived experience from disabled children and adults, and research, to get to the outcomes sought by the child and family. This starts by connecting to them, becoming curious about their preferences, skills, routines, behavior, needs, and interests, thinking about the person as a whole and the family as a unit.” – Amy Rich Crane, Executive Director
Reach recently added a sensory room that focuses on co-regulation through each child’s preferred sensory strategies. Research has shown that children learn new skills through play (especially sensory enriched play) with nearly 200 fewer repetitions than by teaching it verbally or by practicing rote activities over and over. For this reason, the sensory room features specialized lighting effects, mirrors, a sensory fidget calming tool kit, a lego wall, obstacle courses which often include a ball pit, body socks, crash pads, a rock wall a light up table, music; all these tools can be used by the child in play, while also developing their coordination, planning, problem-solving and regulation skills, help them get to the just-right energy level and/or regulate big feelings that they need to work through.
Tools are picked based on child’s interest, strengths, and areas of growth, with the mindset that we all can benefit from coaching in learning new skills to be successful. We use this model, instead of focusing on negative behaviors or challenges that may arise when a child is struggling to participate in their daily routines. In outpatient therapy and child development, if the activity is not meaningful or have several components of fun for the child, then you’re doing it wrong, because all kids learn best through play. Even as adults, we know we learn skills faster when we are interested in them, as intrinsic motivation plays a big part in learning. When working with Autistic children we focus on respecting the way their brain works, meeting them where they are at, highlighting the good, helping them with goals that are meaningful to them, and helping their family advocate for their child’s needs in a world that is currently set up for neurotypical success.
“We want to work alongside Autistic individuals to help them grow their advocacy efforts, because it’s their life. They need to know that they are bright, beautiful, wonderful human beings that may face a lot of uninformed people, even well-intentioned people that may be missing the mark. If someone feels like they’re not being valued, or has shame or guilt being put on them, they need to know they can speak up and say, ‘My brain works differently– I need X, Y, and Z as atool,’ and know they’re being heard.” – Amy Rich Crane, Executive Director
When people ask why we do what we do, it’s all about supporting children, empowering families, and for moments like this, hearing Autistic voices say “At Reach I feel safe, I feel understood, and I feel like we are a team all working together to make change.” – Amy Shaw, Neurodiversity Advocate and Mother.
Discover Reach’s specialized approach to affirming therapies that support Autistic children and empower their families at https://reachftt.org
To learn more about Autism Acceptance, visit https://autisticadvocacy.org/