Intellectual Disabilities

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When Families Affected by Profound Autism Feel Isolated in the Autism Community

When Ian was first diagnosed, I use to jump headfirst into any and all support groups and discussions. I used to look at it as, “It’s not a disability, it’s a different ability.” I would post supportive articles and quotes all over my profile, post all the happy and quirky aspects of autism that made us laugh and unique. As the years went on, there was a shift. I’m not exactly sure when that shift started to happen, but I found myself looking back and wondering when was the last time I posted a funny story or posted on an online autism support forum? When was the last time I felt like autism was a gift? What once used to make me feel welcomed and part of a community, made me feel anxiety, loneness, and frustration. Where were others like me? The moms with the kiddos who don’t talk, who will probably never utter a word. Where are the moms whose kids are still in pull-ups and may never be toilet trained? Where are the moms with kids who have intellectual disabilities? Where are the moms with kids that are aggressive? And so on. I saw more and more judgement against families who didn’t feel autism was a blessing. Why is that a requirement to fit into the autism community? When did I start feeling like autism wasn’t a blessing? Where does my family fit in? I felt a shift within the autism community, the community I was supposed to be a part of, feel support and understanding. I no longer searched for comfort and understanding from within the autism community, the kind often found in support groups, blogs, and even within our very own neighborhood communities. I became more isolated. I only looked for support from families like ourselves, who weren’t afraid to separate high functioning autism from profound autism, who were ok with the distinction and didn’t judge us for it. I was careful who I let into our world, especially those within the autism community. As the years went on, I began to carve out a space for families like ours, ones I hold close and I’m fiercely protective of. The profound autism community exists. Often times we don’t see our autism as a blessing. We hold dear our loved ones who are severe and profound but we do not judge those for being scared, frustrated, and wishing things were different, and dare to say: When we wish our loved ones didn’t have profound autism. Instead of judgement and contempt, we fill each other up with words of understanding and support. Why is there isolation within the autism community? How do we change this? What is the answer? I’m not sure, to be honest. Is there a way for the autism community as a whole to find support and understanding together? To stop judging and understand not everyone is going to feel and see their circumstances the same. We all have battles. My hope is, one day, the autism community can come together from high to low and everything in-between.

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Physically Disabled, but Not Intellectually Disabled

Think about what you do best. Are you creative, a musician? Do you cook well? Were you a star athlete in high school, and do you still try to stay in shape? Maybe you are very cerebral and well-studied. You are humble enough to know you have weaknesses, but see your strength as your contribution to the world. Something you can fall back on and say you are good at, even in the face of other challenges you may face in life.

Imagine a world in which not only are you not recognized for your strengths, but your strengths are actually seen as weaknesses. Ever since you were a kid, people assumed your strength was a weakness, and you know that there will always be people who make that assumption until the day that you die, no matter how hard you work at your strength or how many accolades you receive.

There is a widespread misconception that most people with physical disabilities also have intellectual disabilities. Statistics show that this is not the case. Common physical disabilities include cerebral palsy, spina bifida, and muscular dystrophy. Around 50-70% of people with cerebral palsy do not have any intellectual or learning disabilities, according to the and Estimates show that around 70% of people with muscular dystrophy do not have any intellectual or learning disabilities, according to the According to the, 80% of people with spina bifida do not have any intellectual or learning disabilities. These statistics do not include many other forms of physical disability, including, but not limited to, physical disability as a result of chronic illness or injury.

The truth is that not only do most people with physical disabilities not have intellectual disabilities, but many of us have above-average intelligence. Like a blind person with strong hearing or a deaf person who can see well, people with physical disabilities often use their intelligence to compensate for their weaknesses.

As a child, I was not playing on sports teams or dancing in recitals. I was reading, working on homework, and trying to win academic awards. It’s what I knew I could do well, and gosh darn, I was going to excel at it. For most of my academic career, I was not in special education classrooms. I was in Honors classrooms.

This is not to say people with physical disabilities are better than those with intellectual disabilities or that intellectual disability is a valid reason to treat someone poorly. Every person-whether physically disabled, intellectually disabled, or both, deserves to be recognized for their strengths and accommodated for their weaknesses. (According to the, 85% of those with intellectual disabilities only have a mild intellectual disability. Also, even those with severe intellectual disabilities have value as human beings.)

This is about the many times I’ve overheard people whisper in shock, “Jen’s actually smart.” This is about people speaking more slowly or over-explaining things to my friends and me. This is about employers making pre-judgements about candidates with visible disabilities. This is about how many accessible recreational activities, social activities, and even church programs for people with disabilities are geared toward those with intellectual disabilities or even children. (At times, the leaders of such programs assume grown adults with physical disabilities need their parent’s permission to participate.)

This is about the strengths of people with physical disabilities being mistaken for our weaknesses.

Quest - Article - When Neuromuscular Disease Affects the Brain | Muscular Dystrophy Association

If you’re the parent of a child with a neuromuscular disease, you’ve probably heard something about learning disabilities, mental retardation or emotional problems that accompany some of the muscular dystrophies and related diseases. But this information is often expressed in vague, general terms, leaving a parent wondering what specifically has gone wrong, whether the child’s school problem is directly related to his neuromuscular disease or not, and — perhaps most important — what can be done to help. Several neuromuscular diseases can involve cognitive problems.
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Do you find people don’t believe, respect or honor your disability? Have you lost friends because of this?

The problem with having severe mental illness and trauma, or really any disability for that matter...

If you don't act "disabled enough" in public, people assume you're fine and should be functioning just like everyone else... If you're able to hold a conversation, or go to a social event, or work a job, or go to the grocery store, or clean your house, even part of the time, people assume you're absolutely fine and faking/exaggerating your symptoms. Even if I can do the task once and fail the next ten times, people think because I did it once I'm 100% fine.

But if you act "too disabled" people think you're "crazy" and a burden and want nothing to do with you. If you're suicidal, out of control, crying, self-harming, having flashbacks, getting angry for "no reason", canceling plans, unable to work, can't keep up with responsibilities, can't go out in public, can't clean, or can't socialize, people get tired of you, ignore you, get mad at you, blame you for your symptoms, and don't want to be around you.

This also applies to physical and intellectual disabilities and chronic illness. For example, being able to walk. If a person in a wheelchair walks once in a while, they aren't "cured" or faking it or not trying hard enough, they're still disabled! Disabilities don't present in the same way every day. Some days I can go to an appointment and then clean for six hours and be absolutely fine, and some days, like today, simply opening an incorrect bill will trigger a severe and disabling meltdown for several hours. We have good days and bad days. We are trying harder than you can imagine. Please understand and be patient with us.

Nobody is faking their trauma or disability. Nobody is exaggerating their symptoms. Nobody is pretending as an excuse to avoid responsibility. We are doing the best we can. We need compassion and understanding from those around us. We're trying so hard. Every day is hard for us and we're doing our best. Please try to understand.

Please feel free to share your thoughts and/or experiences with us. We are here to support one another and lift each other up.

Thank you all!

#MultipleHealthChallenges #invisableillness #Depression #Anxiety #youarenotalone #mighty contributor #warriors #Fybromyalgia #Gastroparesis @moshe222mhc

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I’m new here!

Hi, my name is InaFog. I'm here because I recently started taking xywav for idiopathic hypersomnia and looking to connect with others who have similar experiences.

#MightyTogether #Anxiety #Depression #ADHD #Hypersomnia #sleep-WakeDisorders #RapidEyeMovementSleepBehaviorDisorder #IntellectualDisabilities #polycysticovarysyndrome(PCOS)

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I’m new here!

Hi, my name is msathish. I'm looking for help regarding how to get into the workplace and find the correct type of roles where the provide support/ accommodations as I have been discriminated against twice .

#MightyTogether #LearningDisabilities #IntellectualDisabilities

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I'm new here!

Hello, Im Henrik_the_Dane
Im here to meet others at the distance and be inspired to live with higher quality of life and thrive better even Im unstable as a person.
Im intellectual high function, but cant make my day work because of cPTSD, dissociation, burnout, depression, bodily distress syndrome... That kind of things. And lots of loneliness of course.
Ima father to grown up boys and its difficult to be a parent and being unstable, not happy, not proud...
Even I have showed them Im a Father with a big heart and I love them very much...

#MightyTogether #Anxiety #Depression
#MentalIllness #IntellectualDisabilities #ComplexPosttraumaticStressDisorder

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Today's Multi-Step Security Requirements are a Barrier for Some People with Learning Impairments

I’m a very smart person. I have a nice job teaching at a college program for people with intellectual disabilities. However, I have problems processing sudden multi step directions and tasks, and I always have. Because of a mild brain injury I acquired at birth, I have slow processing speed. So, I’ve always needed to establish a fewer set of steps for important tasks, since I was little.

Hence, the decision by the powers that be to require everyone to go through multiple steps to access a website, email account or bank account is a real issue for me. Although I do not wish to have my identity stolen, I think a simple password of my choosing should be sufficient. One of the techniques that I try to use to cope with my learning impairment is to use the same password for everything. Requiring me to add a number, a character, or whatever else a particular program has decided to require, and then demanding that I check my phone for an additional security prompt, and then making me identify all the pictures with cars, etc, means that I struggle to access information that I need to do my job and connect with other people.

Therefore, I should be able to choose my own level of account security. If I don’t want to add a bunch of extra characters to my password to make a particular account more secure, the powers that be should allow me to make that choice.

The technocrats with increasing power in our society need to give consumers the autonomy to decide our own risk level. They need to recognize and consider the needs of people with different learning styles, intellectual disabilities and emotional disorders when they design their software. For some people, a simple password that we create ourselves is a critical accommodation for an impairment.


Facts About Autism in Adults

Autism manifests before age 3, so most new diagnoses of autism are in children.

Most people who actively read about autism are worried-but-hopeful parents or guardians of children who are or may be autistic.

By the time autistic children are adults, many parents or guardians feel they're as expert as anyone who might be writing about it.

Because of the changes in how autism is defined, many adults now considered autistic never received an autism diagnosis.

High-functioning adults with autism are often uninterested in reading about non-autistic perspectives on autism.

Some adults with autism have intellectual disabilities that make it extremely difficult to read about autism. #ASD #Autism


Protecting Kids With Disabilities From Sexual Abuse

Part 1 of 2 >Though there is no specific discussion, please consider this a blanket trigger warning for sexual abuse of children for this entire article. It’s not a fun topic, but I hope you will read and utilize the suggested resources to help protect your child.<

The rates of abuse for disabled children and adults are staggering. The nature of crimes against child and adults with various disabilities and differences make it difficult to tell exactly how much sexual abuse is happening, but the data shows that children with developmental disabilities like Autism or intellectual disabilities are somewhere between four and ten times more likely to be victims of sexual abuse than non-disabled or typical children. It doesn’t improve in adulthood either. Some studies have shown that the rates are as high as 90% for adult disabled women.

If this is new information for you, I’m very sorry that I had to be the one to tell you, but I am glad you know because now you can do something to help protect your child and other children as well.

Be suspicious: There are many things you can do. The first is to be aware that sexual abuse of Autistic children and adults and children and adults with other disabilities happen in all settings by people trusted to care for them (and sometimes other youth and adults sharing the same settings). It’s my personal conspiracy theory belief that pedophiles choose jobs to give them the greatest access to vulnerable children. Making schools, churches, sports, and after-school recreational programs places I am squinting eyes and watching closely. The majority of people arrested for child sex crimes have no previous record.

Communication: If your child doesn’t have a communication method, keep working on finding one. Whether they communicate easily or not, let them know that they are valued and believed to be competent. When they do communicate, trust them and let them know they will always be taken seriously.

Teach your child about their bodies and about boundaries that others need to adhere to. If the child needs assistance with toileting or dressing, this will mean you need to get very specific about what they should expect. Ask your school about bathroom policies. Encourage no one-on-one or open bathroom policies for students that need assistance. Advocate for cameras in SPED classrooms.

Teach them the correct names for body parts from the beginning. Explain parts for both sexes not just their own. Teach them that even you respect their bodies and their autonomy over them.

Talk to other adults about boundaries. Tell them your child knows about their bodies, and that they aren’t to be touched. It’s ok to make it weird. We are putting out the word that our kids are not the ones.

Reduce access: Eliminate one-on-one access to your child, if possible. Otherwise, make any time they have with other adults observable and interruptible.

Be aware of grooming: Often when grooming is discussed, it’s considered to be the actions a molester takes to get a child to trust them. It’s also the work they put in to get other adults to trust them enough to relinquish control of their children. Use that suspicion for anyone who wants alone access to your child.

Gut check?: Often, parents have no idea when a person has been found to have molested their child. It was someone they knew, trusted, and liked. Grooming has worked so well, the gut didn’t alert the parents to the danger. IF you get The Bad Vibe from someone, listen, but DO NOT rely on your gut to tell you that someone is safe.

Listen to your child: Believe what they tell you about people. Observe if they are uncomfortable around certain other people or if they don’t want to go to certain locations. Investigate the reasons for these. Look for behavior changes and nightmares. If your child discloses abuse to you, your first response should be, “I believe you, it’s not your fault.” The second should be, “let’s get help.”

Model consent and honor choices: never force. I mean almost anything. Resistance is a method of self-protection. Allow your child to learn that their boundaries are to be respected. Only force things that are life or limb.

Ask permission to come into their rooms–even if they aren’t speaking. My child is a non-speaker. I always knock. Ask permission to hug or kiss them. Never force affection such as making them hug or kiss relatives or even you. This teaches them not to tolerate invasions of their bodies.

Get trained: For a simple and straightforward 2-hour course on how to prevent abuse and support child victims, I highly recommend taking the $10 online course through Darkness to Light. It covers what I’ve discussed here and more with greater detail and personal stories from adul


I'm new here!

Hi, my name is NahalAlsina. I'm here because I wanted to talk about my struggles with being neurodivergent.

#MightyTogether #BorderlinePersonalityDisorder #IntellectualDisabilities

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