Motherhood is often described as one of the most rewarding and challenging experiences a woman can go through. Yet, for mothers of children with differences, the challenges they face go beyond the conventional understanding of parenthood. They find themselves in a relentless battle, not only against external obstacles but also against the internal struggle of knowing they have given their all. >br/> Mothers of Neurodivergent children embark on a journey marked by profound love, compassion, and dedication. From the moment they learn of their child's condition, they become unwavering advocates for their well-being. The first battle they encounter is the battle of acceptance. They must come to terms with the fact that their child's life will be different, filled with challenges that most parents will never understand. The Battle for Access to Resources: Once the diagnosis is confirmed, mothers often find themselves in a battle for access to essential resources. This includes medical care, therapy, educational support, and community programs. The fight for these resources can be overwhelming, involving countless phone calls, paperwork, and advocacy efforts. Many mothers become experts in navigating complex systems to ensure their child receives the best possible care and opportunities. The Emotional Struggle. The emotional battle within is one of the most profound challenges mothers of special needs children face. They experience a rollercoaster of emotions, from guilt and self-blame to frustration and exhaustion. They grapple with the constant fear of not doing enough or making the wrong decisions for their child's future. This emotional turmoil can be isolating, as they often feel that no one truly understands the depth of their struggle. The Battle for Inclusion and Acceptance Mothers tirelessly fight for their child's inclusion and acceptance in society. They challenge stereotypes and discrimination, advocating for a more inclusive world. This battle extends beyond institutions and systems; it encompasses changing societal attitudes towards individuals with different needs. Mothers become champions for their children's right to be treated with dignity and respect. The Internal Battle of Self-Doubt : Perhaps the most challenging battle of all is the internal one—a battle against self-doubt. They often question whether they have done enough, whether they could have done things differently, or whether they are the best advocate for their child. These doubts can be all-consuming, leading to feelings of inadequacy and guilt. The Resilience and Strength Within : Despite the constant battles they face, mothers of ND children exhibit remarkable resilience and strength. They find the inner fortitude to keep going, day after day, for the sake of their child. They become experts at balancing their child's needs with their own, finding moments of joy and celebration amidst the challenges. In the daily lives of mothers, there exists an unseen battle—an internal struggle that often goes unnoticed by the world. These mothers fight relentlessly, not just for their children but also against the doubts and fears that haunt them. Their love, dedication, and resilience are nothing short of extraordinary. As a society, it is our duty to recognize and support these incredible women on their journey, for they are not just "Allies" for the Neurodivergent community they are true "Fighters".
I think most of us do believe that change needs to happen in order to create an inclusive society that gives equal access and rights to all neurotypes. Cormac Russell contrasts four different kinds of change: TO, FOR, WITH, and BY. This can be a useful framework to recognise and improve how changes are approached. TO - Change is done to us, without us This is the most authoritarian form of change, where change is imposed, often to serve a distant agenda. This form of change is often felt as decided without us to be done to us.. This kind of change is dominant when we are talking neurominority #neurodivergents Big organizations like "Autism Speaks" follow this module. FOR - Change is done for us, without us This is a benevolent form of top- down change, where change is still imposed, but is thought to serve a genuine need, and may indeed be seen as servicing a genuine need - depending on the effectiveness of change management. This form of change is often felt as chosen for us then provided for us. This is also prevalent when talking #inclusion and #neurominority. WITH - Change is done for us, with us This is a participative form of change, where change is done collaboratively, and is generally recognised as serving a genuine need. This module is what we need , this collaborative team work to achieve inclusivity and accessibility for neurominorities. BY - Change is done by us, for us This is an empowered form of change, where change is done by those who do the work. This form of change is often felt as done by us, for us. I am a strong believer in the collaborative team work and effort. So how can we look to move more from the TO and FOR modes of change, toward WITH and BY? The WITH mode is sometimes called 'co-design' and 'co- production. When we start with change done FOR or TO people, as often is the case, we preclude people's individual and collective power, and therefore choose autocratic or technocratic solutions over democratic and community solution. "Nothing about them without them" The neurominorities like autistics or people with neurodifferences don't always have a voice and this has nothing to do with the fact that some are non-verbal but the sad truth that there are many people who choose not to listen to them. We are living in a society where Ableism is predominant. This is the exactly why a change is needed a whole paradigm shift. The time to change the perception of what it means to be neurodifferent , neurodistinct, neurodivergent or neurominorities.
Most often using a deficit - based model with autistics or any neurodivergent will not serve them well. It is time we move away from this model and start thinking how to support neurodivergents to build from their strengths to support their joy and participation in life, leisure, and work. We need to move away from the deficit -based approach to a strength- based approach. Somehow it is easier to use the deficit- based model and the reason behind it is that most therapists or parents are taught to look up for the challenges and deficits. All the assessments are around figuring out what’s wrong with the neurodivergents. Most of specialists in the field are taught how to fix these deficits or how to make it easier for the parents. We need to focus more on what the neurodivergents can do, their strengths and abilities. The problem of the deficit -based approach is that it will never help autistics and neurodivergents live a meaningful life. This is why we always talk about the medical model that focuses more on deficits versus the social model that amplifies the abilities and is a strength-based approach. The social model believes that the problem of being a neurodivergent is not the diagnosis itself it is the society, the school, college or workplace that are not built to play to their strengths with all the expectations that upholds "neurotypicality " as the benchmark for success. Anne Donnellan established the notion of " The least dangerous assumption." Donnelan emphasized that without verifiable data, professionals need to make assumptions that are the least dangerous for learners, and that means to presume competence. This paradigm shift can dramatically help us move towards a SBM (Strength based model) . Presuming competence is unpopular within disciplines that rely on data collection of observable behaviors. Some concrete steps that can help us get there to this SBM are; 1- Presuming competence and moving away from withholding special interests 2- Asking autistic adults or neurodivergents what would have helped them in school setting or what would really help them now in a work environment 3- listening more to ND voices. When we know different, we act different. 4- Modifying the activities in therapy sessions to work around the learner special interest 5- Stocking our toolbox whether as a parent, therapist or educator for a strength-based approach 6-Respecting the different learning styles of students with different neurology. We do not need to ignore the challenges and impairments if any but we need to make sure we are not focusing too much on these struggles that we are loosing sight of their strengths and abilities. The SBM will help neurodivergent students reach their full potential and build their self-confidence. Neurodivergent students deserve to feel good about their place in this world.
Using a neurodiversity affirming language means using the disabled people preferred terminology. Most individuals with disabilities vote for the word " disabled" when asked to choose between "disabled" or "differently abled" I myself was asked several times to replace the word "differently abled " to "disabled " in my articles. There is a lot of unnecessary stigma attached to the word disabled. I have come to believe a lot of this unease with a simple word comes from fear. Anyone can become disabled at any moment in their life and 15 per cent of the world population experience some form of disability. Hence it is time we normalize the word especially that most people experiencing it prefer to use it. On the other hand let me make it very clear that I do not profess to speak for the entire disabled community, i strongly believe that everyone should identify as they feel most comfortable with. Having said that I must admit that I do realize most people who insist on not using the word disablity perceiving it as an "ugly word" or "offensive" they dont have a disability themselves. Whether it be parents, caregivers, educators, experts , relatives or friends they dont feel comfortable using it and this could be due to many reasons mainly social stigma and fear. The fear of label and being judged as a person who is unable to do specific things. Well, here is the thing though. The truth is that there are many things that a person with disability will never be able to do and yes this hurts. However using the word differently abled doesnt make it any easier for them. It just makes the able bodied people around them more comfortable. It is only fair to admit the person's disability and normalize it. We dont have to be afraid of the idea of disability so by not using the word we are somehow stigmatizing the idea of having a disability. People with disabilities can live fulfilling productive lives and need to be validated as they are. So we can say it out loud with no fear or ableism "DISABLED"
Special interests are one of the many common traits that are prevalent among autistics. Many people describe it as a deep obsession but it is actually an intense passion for a topic or activity. Only in the past decade or so that autism professionals have begun to recognize the value of these intense interests Clinicians have historically called them circumscribed interests, and they belong to the category of diagnostic criteria for autism called "restricted, repetitive patterns of behavior, interests or activities," Many parents, caregivers or professionals fail to see the benefits of special interests to autistic individuals and they perceive it as a distraction from their school, college or normal routines. Hence, they try to redirect it, leading to meltdowns and undesirable outcomes. Special interests are really valuable to autistic individuals so trying to redirect this passion will cause more harm than good to the individual. Many researchers are studying how the intense passions of autistic people shape the brain, improve well-being and enhance learning. The real paradigm shift is thinking about special interests as more positive." Rachel Grove a psychologist and research fellow at the University of Technology Sydney in Australia said. Unfortunately, there is still a lot of negative language going on around special interests like "distractions", "obsessions" and others. Instead of trying to erase, redirect or suppress this passion, we need to start leveraging it, working it into the curriculums and IEPs, and thinking of it as a vocational skill that may launch a career. Special interests have many benefits for kids and adults 1 - It builds self-confidence 2- It reduces anxiety and stress levels. 3- Helps in gaining social skills. 4- Helps in gaining life skills that may launch a future career. 5- Reduces meltdowns and burnouts. 6- It can help in building relationships and friendships if individuals share common special interests. Special Interests will help in many ways but also has many cons like it can lead the person to stay focused for hours without eating or sleeping. In these cases, redirection is needed to avoid any health issues.
There are certainly many ways to support parents of autistics or neurodivergence. It all depends on what the individual can offer. Does he/she want to show sympathy only? Or they want to step in the parents' shoes and empathize with them. Most autistics and their parents do not need sympathy at all. In fact, there are many sympathy words used that are offensive to them. People with disabilities and neurodivergence don't require understanding from your own perspective. They need acceptance and validation that is understanding their own existence and perspective. Neurodiversity is proof that there is a different neurotype in our world hence a different way of existing and thinking. Responding with empathy rather than sympathy towards differences and disabilities is much needed in our world. Our society tends to tilt towards sympathy especially in the case of a person with a disability whether visible or invisible. People tend to choose the wrong words to show support for people of determination. Most often they offer unsolicited advice or tell them to stay positive. They might say "you don't look disabled " or" you look normal. Despite the good intention, these words are hurtful and offensive. They reflect the social ableism and injustice that people of determination struggle with. People with disabilities need to be treated as normal human beings. People with disabilities do not require any sympathy, pity, or mercy. They want to be accepted and included. The best way to accept someone is to try to listen to him with a goal to understand and accept rather than judge or advise. Telling an autistic person or his parent that they will get better or recover will not help. Try instead to be more present and educate yourself more about neurodiversity. When communicating with disabled people talk to them directly not their companions or parents We are all trying to live in this world with dignity so let us practice more empathy towards each other.
Autism masking at school is very common and many professionals, parents or educators dismiss it or are unaware of its long term consequences on the mental health. Masking at school might be your child survival kit to avoid being bullied or harassed. It might be their strategy to fit in or feel accepted by their peers or teachers. What we see on the outside is totally different from what is happening inside. Our child might look calm, well behaved, stimming less, and acting more neurotypical so we jump to conclusions assuming everything is fine. Most often it is tough to figure out what's happening inside our autistic child's brain. We can't notice whether this is masking or real progress. There are many signs to watch out for : 2- Your child is calm and well behaved at school while there are many meltdowns at home. 3- The moment your child is back from school you feel extreme exhaustion and burn out. 4- Your child is not accepting mistakes at school and is always worried. Masking at school can help your child in many ways to feel accepted and avoid bullying but can also have a negative impact on his mental health. Many studies and autistic self-advocates warned of the consequences of long-term masking. Anxiety, exhaustion, low mood, confusion, and loss of identity. It is important to model acceptance at home so our kids feel safe enough to unmask their traits. They should not feel the urge to mask at home too.
Masking or camouflaging is very common among autistics. It is the ability to hide and suppress their neurodiverse traits while performing, practicing, or copying certain behaviors’ in order to feel accepted by society. Masking is not an easy task or something they like to do; it is only a “survival strategy” in an ableist society where neurodiversity is not yet fully understood or welcomed. For many autistics masking Is their daily reality, they need to hide their traits so they can survive a day at work, school, or college. Masking can help autistics and protect them from being bullied, harassed, or isolated. Many autistic adults helped in explaining how they mask, and the long-term effect of masking. However, less do we talk about autistic kids masking which is also very common especially at school, during therapy sessions, and at social events. There are many questions “why my child is only misbehaving at home?” “Why my child is too calm at school and the moment he reaches home he throws a meltdown?” “Why my child is acting so defiant at home while being compliant in therapy?” The answer to all these questions is “Masking”. Your child is not misbehaving only at home but he is truly exhausted from masking all day at school so he feels safe enough at home to show his traits. Your child is not being compliant when doing aba sessions as most of the time he is being taught how to mask his traits and mimic the neurotypical traits as they are viewed as the normal benchmark. Having said all of the above, we need to emphasize that therapy is surely needed and this is not by any chance underestimating the benefits of good neurodiversity affirmative therapy. Many parents confuse masking with progress. They notice changes in behavior, less stimming, more eye contact, smiling back, and others so they assume their child is doing better and happy. They might associate the improvement with a new protocol they tried or new therapy they started. When in reality their child is just learning how to mask and the older, he grows the better he can mask. There are also many studies suggesting that masking is usually higher among females which can lead to late diagnosis in some situations. Masking can be a survival strategy for neurodivergents but can also lead to serious consequences. Some of the many long-term side effects of masking are: 1- Exhaustion and loss of identity 2- Anxiety and compromised mental health 3- Delay in autism diagnosis 4- High risk of suicidal thoughts among autistic adults (many autistic adults opened up about this topic) 5- High risk of meltdowns and burn outs> As parents, we can only try to be more mindful about this topic and try to learn more about it. We are all trying to support our kids even if our perspectives or approaches differ. Our kids need to feel our acceptance first not the society. Many autistics are uncomfortable with masking or they don't know how to do it and this is a valid way to feel too.
Infantilization is when an adult is being treated like a child. Infantilizing is treating someone as less than they are just because they have a disability whether visible or invisible disability. Infantilization is offensive and can cause more distress to people with disabilities. Just because they have a disability that doesn't mean they have to be treated as infants. While our intentions might be good but we should be mindful of our actions impact. Infantilization can take many forms; 1- Talking to Someone Like They're a Child Or talking to a child like they are an infant 2-Over-Simplifying Vocabulary or Over-Explaining Concepts 3-Addressing Another Adult or Caregiver Instead of the Disabled Adult Themselves 4-Not Allowing The adult or child to Be Independent 5- Not Taking a Disabled Person's Opinions, Beliefs, or Desires Seriously. Infantilization should stop it is offensive and harmful to all disabled people. Even if it is well intended which is probably more often but we need to take a stand against it. Infantilization can erase the voice of people with disabilities. Many adults with disabilities find themselves ignored based on the assumption that their opinion is not valued or valid. Infantilization can also cause low self esteem where the person feels dismissed. Low self esteem can cause more dependency and more anxiety. Now how to combat our tendency to infantilize people with disabilities, we should always assume the person can and does understand fully what we are saying. We need to presume competence even if we are not sure about it. We also have to be mindful of others when they are infantilizing so we bring it to their attention. As oftentimes people do not mean to do so in a mean way but it can still be hurtful and insulting.
Many individuals underestimate the advocacy work but the reality is advocacy is working for social change. When you are committed to change and willing to publicly share your commitment then you are on the right track. Advocacy usually starts at home with your family and friends. It is so important to share your viewpoints with close people so they can understand you or your child more. If a family member cannot accept your child, you may need to pull your strongest advocacy skills and limit the relationship that family member has with your child. When you are self-advocating or advocating for your child you are also standing up for the rights of others. We need to be so mindful of how we speak to our children in public as others will follow our lead. We need to model acceptance and respect to our children, If you want others to treat your child with respect, then you must demonstrate by your actions how you want your child treated. We need to respect our children's choices and model acceptance so they will grow up and learn how to self-advocate and fight for their rights too. Advocacy can happen in unexpected places not only in events, public platforms, social media, or support groups. We just need to be mindful of the following; 1- Request permission to engage in conversation. 2- DO NOT force anyone to take a position they do not want. 3- DO NOT make promises you can't keep. 4- you need to be flexible and receptive as sometimes this will lead to reasonable conclusions. 5- Don't be demotivated when failing to shift perspectives. Changing mindsets is an ongoing long journey. 6- If you are the mother of an autistic child, replace the Super Mom term with the Super advocate term. So next time your child is having a meltdown in mall or public place and you are surrounded by judgemental eyes remember to put ur "A" hat and "SA" on your chest because you can be a super advocate
Introducing your children to their diagnosis is never easy. Many parents are fearful to start this conversation even when they feel their child is ready. There are many factors contributing to this. Parents are afraid that labeling their children and getting to know about their autism will make them feel broken. They start thinking of all the social stigma and ableism in their surrounding. They dont want their child to start this war. They want to keep fighting on their behalf. This is exactly how parents feel every single day. Navigating the autism journey is like walking in a minefield or fighting a war against ableism, ignornace and prejudice. All these concerns are valid but introducing a child to his autism is so important. Most probably your child already feels or knows he is different especially if he is going to school. Your child may have already made wrong assumptions about his differences like he is having a disease or illness. Not understanding their differences will lead to more anxiety and behavioral problems. They will have many questions even if they are non verbal or cant communicate. Rest assured that your child can sense the frustration and confusion of others. Getting started with the autism conversation at the right time will give your child many answers and sort of relief. There is no exact age or time that is correct to tell a child about their diagnosis. A child's personality, abilities and social awareness are all factors to consider in determining when a child is ready for information about their diagnosis. There are many ways to approach your child with this topic and here are a few tips on how to make thw conversation more positive. 1 - Don't fear using the word Autism even if your kids dont undersfand it yet. If you try to hide a child's autism or discuss it in whispers, they'll learn that it's something shameful or bad. 2 - This conversation can help shape your child's opinions of autism. Use the same tone of voice that you'd use to explain why cars have wheels, or why you go to the grocery store every weekend. Keep your attitude positive and try to be totally relaxed 3- Expect to have multiple conversations. Your child will probably come back with more questions. Don't feel that you need to fit all the information into one conversation. 4- Emphasize the fact that it is totally okay to be different. Differences are good and they don't need to feel bad about them. 5- Remind your kids that it is okay to struggle and have challenges in life. Reassure them that you will always support and help. Always reassure so they wont feel like a burden. 6- If your child is verbal, encourage to ask more questions and be patient when they dont understand. If non verbal try using the usual form of communication. 7- Try to use metaphors. Metaphor can help a child develop a better understanding of autism. Eg; Let's say your brother brain works like phone your brain works like Samsung. Both are great brands but each works differently and have its own apps and system. 8- Talk about some of the strengths associated with autism. Pinpoint a few strengths that your child has, and explain them briefly. This lets the child know that autism isn't all bad. 9- Warn a computer-savvy child not to look up autism. The internet is filled with negative and misleading sources.An autistic child who comes across negative attitudes about autism may start to feel low self-esteem or even self-hatred. keep warning about the wrong and misleading info online. 10- Try to use story books or social stories with visuals if your child likes them. There are many good books to introduce your child for autism. Some of them are also written by autistic authors.
1- Neurodiversity is not only for individuals who have less impairments or disabilities There is a lot of misconception about autistics who embrace the model of neurodiversity, thinking that they have less severe traits, challenges or impairments with autism. Many people think that most self advocates have intact language and no social or learning difficulties. But If we dip into the wide range of features that are seen in autism, we will find differences and disabilities which are both compatible with neurodiversity framework. 2- Neurodiversity does not deny the disability aspect in Autism. Neurodiverdity model has been so controversial although it is a reality. The thought that neurodiversity model views autism as only a difference but not a disability is not accurate at all. Disability is a complicated thing. Sometimes it is defined more by society's expectations than by individual conditions. Other times it is defined by the individual condition itself. Neurodiversity model do not deny the disability aspect in autism cases or other conditions but do not consider these disabilities flaws or source of shame. Disability, no matter how profound, does not diminish personhood. Disabled people are not broken or incomplete versions of normal people. 3- Not pathologizing Autism doesnt mean Pretending Autistics dont have impairments. Few (if any) neurodiversity advocates deny that impairments exist in autism. They all agree there are many impairments and many challenges that need to be addressed. Neurodiversity advocates same as those who embrace the medical model of autism do hope to find answers and treatments for all the Health struggles that comes with autism and we call it comorbidities ( digestive issues, epilepsy and others). However, neurodiversity model emphasizes the fact that these health or medical conditions are not symptoms of autisms. Neurodiversity model is not dividing autistic community and is not meant to be for those with less social or language impairments. Neurodiversity is an umbrella for all brain differences. Neurodiversity is primarily a call to include and respect people whose brains work different ways, regardless of their level of disability. We always focus on autism, but neurodiversity is about minds of all kinds.
1- The concept of naturally diverse brains is important as it doesnt not only encourages people to accept neurodivergents but also neurodivergents to accept their differences. 2- Neurodiversity helps support inclusion in schools by convincing the regular classroom teacher that adding neurodivergents student will make the classroom better. 3- Neurodiversity can lead to the betterment of a company by hiring individuals that think differently and have different perspectives and opinions about problems and challenges at hand. 4 - Adding a few different perspectives, adding purposeful value including creativity and lateral thinking. Neurodivergent people might also commonly hold highly specialized skills. 5- Neurodiversity is challenging old habit. The biggest strength of being neurodivergent is that in itself, the ability to think differently compared to neurotypical people 6- Neurodiversity concept can help reduce help stigma arround learning and thinking differences.
Autistics are not only looking for awareness but also for acceptance and support. Spreading the right message in Autism Awareness month is so important. We envision a world where individuals and families living with autism are able to maximize their quality of life, are treated with the highest level of dignity. We hope one day we will live in a society that accepts, embraces and includes people with different disabilities. Autism advocacy is a process of supporting and enabling autistics to express their views. Spreading awareness is not enough we need to advocate for inclusion and acceptance too. Advocacy is continuous efforts to combat ableism and ignorance. It is not seasonal but an ongoing process. There are many small steps we can take that makes a big difference. Spreading Awareness is important but it is teaching tolerance which is not enough. Autistics need acceptance, inclusion and support. There is a lot of controversial opinions and beliefs when it comes to autism. However there are few things to be agreed on. Compassion, acceptance, inclusion and support
Many parents confuse meltdowns for tantrums and think they are the same thing. There is also a misconception that only kids have them. These behaviors can look similar when they're happening. But a meltdown is very different from a tantrum. And some people have outbursts even as teens or adults. Tantrum happens when a child is trying to get something or trying to communicate a need. Meltdown occurs when the person or child is overwhelmed by his own feelings or surroundings. Meltdowns are usually more intense. They might involve crying, screaming, throwing or breaking things, or other physical expressions of distress. Some people also withdraw or zone out. It is important to know that tantrums can also turn to meltdowns especially in younger children. A child might throw a tantrum in an attempt to communicate a need but then loose control over his body and emotions. He might be overwhelmed by his negative emotions and the tantrum will turn to meltdown. When we understand the difference we know better how to cope and teach our kids self regulation and coping skills. Anxiety can be one of the main triggers in meltdowns whether it is social anxiety, GAD or seperatiom anxiety. Usually the inability to identify emotions and self regulate is very common among autistics. Parents can help in many ways when a meltdown is happening; 1- Validating the negative emotions and not dismissing them 2- Trying to identify triggers and avoiding them 3- Trying to reassure the child 4- Asking close ended questions like do u need water? Do u need ur weighted blanket ? Do u want me to stay close ? Can i Hug u ? 5- Staying calm and keep positive body language. 6- Avoid Asking many or open ended questions ( what do you want ? How do you feel ? Why you are upset ?) while your child is having a meltdown as probably he won’t be able to process your words properly.
There are many misconceptions and myths attached to special education just like any other topic related to autism or Neurodiversity. I am listing below few of the common myths we usually hear. - "kids having special education or learning support assistant should be in seperate classrooms" - "kids who get extra help and support will always be labed and maybe bullied for that" - "kids that gets special education have intellectual disabilities or are mentally retarded" - "kids who have extra needs should not participate in classroom activities" - "kids who receive special education don't get a good education" Debunking those myths one by one; 1- kids who get special education should not be in seperate classrooms. In fact there are many studies that proves these kids perform better when in classroom with their peers. This concept is usually called less restrictive environment. However, some parents or kids prefer being segregated into different classrooms as they feel safer there only then and if it is the child's desire and based on individuals need segregation can be considered 2- Many kids who receive extra support in their education do not have intellectual or cognitive disabilities but sometimes learning difficulties 3- Getting the proper education support for our kids doesn't mean they will be Labeled forever 4- All kids in classroom should join in the activities whether academic or non academic ones regardless of their disabilities. 5- Main benefit of education is individualized education based on the child's need. It allows to address and strategize based on the child different abilities and strengths.
Words always matter. Why using hurtful ableist language when we can use inclusive one. Inclusion starts with our thoughts and how we express them. Hence, using inclusive terminology is the most important step towards an inclusive social model rather than the discriminative model. We should start using language that respects disabled people as active individuals with control over their own lives. Language that portrays disabled people as victims, such as” suffers from” “challenged “ should be replaced by inclusive words such as " person living with " " autistic" “person with ( naming his mental health condition" The language we use influences how we think about people and situations. It affects our portrayal of disabled people whether with visible or invisible disabilty. Our language can either promote inclusivity and equality or it can contributes to discrimination and negative stereotypes. Being mindful of our language when being arround disabled people doesnt mean getting stressed or overworried about choosing the right words. We can just be ourselves and learn more about their preferred language.
Having an autistic sibling is just like having a neurotypical sibling can be both enriching and challenging. If you have neurotypical and neurodivergent kids, there is a lot you can do to support the relationship between siblings. It is normal for siblings whether neurotypical or autistic to disagree, fight and feel jealous. Autistic siblings most of the time feel they are competing for their parents' attention. This is normal as we all know that parents put more efforts to support the neurodivergent child which can be time consuming. It is normal that autistic siblings might feel a wide range of changing feelings towards their family situation. Why my parents are spending more time with my sibling? Am I good enough? Am I loved? It is always important to validate their negative feelings and use reassuring language "that must really frustrating I understand how you feel" "tell me what happened, how it made you feel and I promise I won't judge you". "remember no matter how you feel you will always be loved by your family" At times your other children might feel overwhelmed by family life especially if they have sibling with severe difficulties and anxiety. Friendships, doing activities and having fun time outside home can also be helpful. I am listing below a few ways to support your neurotypical child. However I am confident that parents of autistic kids always know better what works best for their family. Always remember you were given this life because you are strong enough to live it. 1- Try to make special time for the siblings. It's good for all children to have one-on-one time with their parents, but it can be especially helpful for siblings of autistic children. 2- Explain Autism to siblings when they are at a developing age they can understand it. Making sure they have accurate information will help reduce anxiety and stress. 3- Find ways to help engage your autistic child with their siblings by doing certain activities together, having meals together or going out together. 4- Set family rules that reinforce equality among siblings. kids need to feel they are all treated fairly. 5- Validate negative emotions of the siblings and try to talk with them frequently about their emotions in a non-judgemental way. 6- Try to find a positive outlet for the sibling's negative feelings. Maybe your kids like to draw to express their feelings or listen to music. 7- Join support groups for siblings or seek professional help from a psychologist if you feel it is needed.
Many parents or autistics have second thoughts about getting an official autism diagnosis. There are many reasons why parents are sometimes skeptical about having their child labeled as autistic. One of the main reasons contributing to this is the stigma attached to autism and other conditions. They think of the psychological risk when having official diagnosis in an ableist society. The struggle for acceptance and inclusion is one of the most predominant challenges autistics and their parents have to face. Parents get too concerned about the future of their autistic child especially after a diagnosis. Will my child be accepted in school ? Will my child have friends ? Will my child get a job? Many questions and the mind gets into the wandering mode which will add more stress to the whole family. However, there are a lot of pros and cons involved with undergoing assessment for a possible diagnosis of Autism. Despite the fear, stigma and concerns there are a lot of benefits when seeking an official diagnosis. First and foremost it is important to realize that getting a diagnosis will not alter the autism or change the person. It will just make it easier to understand the traits, anxiety and behavior. It can answer a lot of questions and clear doubts. Accurate diagnosis may help in getting proper support and therapies whether for autistic children or adults. They can join support groups and connect with people having similar experiences. The diagnosis can help in identifying weaknesses and strengths enabling the therapist and autistic to work together on an appropriate plan. A diagnosis can also prevent distress and stop further co-occuring conditions developing. Getting an autism diagnosis is a hard decision but it can also be the first step towards self acceptance and love.
A fully inclusive society starts in school. Schools are one of the important ways we can prepare ourselves for the society that we want rather than the society we are currently living in. However, Finding the right education for your autistic or neurodivergent child is never easy. There are many misconceptions associated with inclusive education that are so confusing. 1- Inclusion concerns learners with visible disability. 2- Inclusion may jeoperdize quality of learning for other students. 3- Inclusive education is expensive and cannot be afforded by many schools. 4- Inclusion is about segregating disabled/neurodivergent students into seperate classrooms. 5- Inclusive education is one size fits all approach. 6- Inclusive education is working similar IEPs disregarding the student and parents inputs. The truth is that Inclusion concerns learners with visible and invisible disabilities. It doesnt jeoperdize quality of learning for other students. In face students learn more about neurodiversity which contributes to higher level of awareness and acceptance in society. On the other hand, it enhances their social skills. Inclusion education can be afforded by all schools. Inclusion is ensuring that students are learning to the best of their ability. Thus, in an inclusive classroom, students are not expected to "keep up" but to "keep learning." Inclusive education is not a one size fits all program. Duplicating what works in one aspect of diversity may not work with others. The problem of one size fits all approach is it means that schools will attempt to duplicate initiatives or programs that they have seen in other organisations without tailoring it to the needs of their specific school. In the right approach in Inclusive education is tailoring IEP's while the student and/or parent is fully involved in the process of setting goals.
Have you ever felt general feeling of dissatisfaction, unease, frustration or unhappiness ? I am confident that we all did, however experiencing these emotions intensely and regularly might be dysphoria which is opposite to euphoria (state of extreme happiness). It is associated with many mental health conditions; eating disorders, depression, anxiety , PTSD, chronic stress, insomnia DID and others. Dysphoria is a profound sense of unease and dissatisfaction. It is the opposite of Euphoria which is used to describe a state of extreme happiness. Dysphoria is not considered a mental health diagnosis on its own but it is associated with many conditions, anxiety, stress, depression and so many others. As it is not considered a diagnosable mental health condition it is not formally divided into types. However, there are conditions that may be unofficially considered types of Dysphoria like; Body image dysphoria, gender dysphoria and social dysphoria. COMMON SIGNS OF DYSPHORIA2/3 • Fatigue General dissatisfaction • unease • Sadness • Worry • Apathy • Low self esteem • Loss of interest in usual activities • Sleep changes • Feeling of Hopelessness • Unable to feel happy There are many things that trigger dysphoria depends on the type too. Like looking at the mirror can trigger body image dysphoria. HOW DO TO DEAL WITH DYSPHORIA Treatment and support depends on the cause and type of dysphoria each individual experiences. Talk therapy, medication or lifestyle changes can be recommended to help improve the mood and feel better. Dysphoria can sometimes cause people to isolate themselves, but support plays an important role in mental well-being. Focus on finding ways to make more time for people that you trust and feel comfortable with.
Feelings of frustration or anger that a neurotypical person might be able to manage without much difficulty can be overwhelming for neurodivergents. Autistics often don't have control on their behaviors, words or reactions during a meltdown. They feel like they have lost control over their own body functions. They might not be able to control their words, stims, voice tone or their body movements. The worst thing to say during a meltdown "please calm down" "try to breathe and relax "stop crying or stimming" "you are okay dont overreact" etc... I am confident that many neurotypicals say these words as sort of reassurance while trying to be supportive. In fact I was one of them, I didnt even know that these words can be so hurtful to autistics. During a meltdown they are not in control so they cant stop crying or even process our words correctly. They can't simply relax while they are experiencing an emotional turmoil. Words do matter, they can either lift us up or push us down. If we truly want to be supportive, let us choose our words or silence wisely. Sometimes we dont have to say anything, being there for someone is all that matters. Autistics most often prefer to be alone or distant when having meltdown, so better to ask close ended questions "do you want to be alone ?" "Do you need ur weighted blanket ?" "do you want your fidget items?" "you want me to turn off lights" Having said all of the above, autistics just like neurotypicals can control their reactions to peoples' behavior or prejudices. They can be an active participant in their support plan by choosing what works best for them. They can chose when to mask their traits and when to unmask. They can decide what social event they want to participate in. What career they want to pursue or what to major in. They can decide their own special Interests and whether to specialize in it or not. They can choose their own circle of trust . Just because they are neurodivergents that doesnt mean they cant control many aspects of their lives. We as parents should not be deciding on their behalf especially when they are mature enough to take their own life decisions.
Motherhood is that unexplainable feeling you get in your chest when you first meet your newborn. It is a turning point where the whole world starts to feel different. Motherhood journey can be inspiring, purpose -giving and joyful. However; raising kids can be quiet challenging and full of highs and lows. Motherhood is that persistent urge to protect your kids no matter what. This feeling and urge is multiplied by 10 when you have a neurodivergent child. When you are parenting a neurodivergent child or any disabled child you would hate to see your little one going through life struggling, or ever having a tough time. In fact, it might be difficult to turn the protectiveness and worry off sometimes! This protectiveness urge feels Like you are in a battlefield wanting to take all the bullets just to save your child. We are fighting different battles daily that hinders our peace. The first and foremost is our inner battle against our own thoughts and ableism . Internalized ableism exists in each and every one of us , you will keep fighting it and that is totally okay. The battles we pursue against social stigma, ableism, prejudices, misconceptions and ignorance can be quiet soul-sucking yet easier than the raging war within. This feeling of inner conflict can translate into fear, loneliness, guilt and mostly self doubt. Motherhood is not only about good parenting, setting routines, keeping your kids sound and safe. It is about fighting battles you never thought of and exploring inner strength you didnt know you had. To all the struggling mothers I say, allow yourself to feel all these negative emotions, validate them and don’t feel guilty for that. Always remember you are a “ Bulletproof Mom”.
Life with an invisible disability can be totally different. It could be so hard to explain to people the daily struggles you face and the pain you have to endure just because society fails to understand Feeling pain, unwell and awful on the inside whilst looking perfectly well on the outside is common among people with hidden or invisible disabilities or Illnesses. It can be so exhausting and draining putting on a brave face daily to face the ableist world outside. You get questioned a lot about your disability but get no or little empathy. People find it so hard to empathize when they don't understand. You might also be misjudged and denied support just because your disability is not visible enough. Awareness of the impacts of invisible illness is growing, but there is long way to go before our society understands that we are surrounded by people with invisible illnesses and disabilities. There are many misconceptions and myths associated with hidden disabilities like only people who cant walk can use wheelchair. Many people question others when they use wheelchairs without any visible handicap. Not everyone understands that some people cant walk for prolonged time. Because they're not obvious to spot, invisible disabilities may be overlooked and misunderstood. This can lead to discrimination or exclusion of those with an invisible disability. We need to stop judging what we don't understand and be more compassionate. This is a kind reminder that invisible disabilities exist. Most invisible disability metrics in the U.S. say that roughly as high as 20% (or more) of Americans have an invisible disability. There are many ways to show support for people with invisible disabilities. We can start by being more mindful of our words when talking to someone with invisible illness or disability. Our words matter, they can either hurt someone, make them feel bad or lift them up. So why not to chose words that reflect kindness and support especially for people who need it most. Most often people are unaware of the true impact of their words or statements. They probably think they are trying to open a conversation or learn more about the person's disability. While in reality, they are reflecting ableism and apathy. Many of the statements which we raised on are hurtful for the disabled community. People with hidden and invisible disabilities can be hypersensitive as they already suffer enough from ableist systems that deny them support just because they " look perfectly well" or " they dont look disabled" Their struggle is real as many professionals, friends or colleagues at work think they are exaggerating their disability or faking it just to get attention. Here are some words to avoid when talking to a disabled person. “YOU DONT LOOK SICK or DISABLED “ “AREN'T YOU FEELING BETTER YET?” “YOU TAKE A LOT OF MEDICINES” “IT’S ALL IN YOUR HEAD” “TRY TO BE MORE POSITIVE” “ YOU SHOULD BE HAPPY YOU DONT HAVE SERIOUS DISABILITY.” “YOU SHOULDNT USE HANDICAPPED PARKING” “ WHAT DO U HAVE? NEVER HEARD OF THIS.“ “AT LEAST YOU DONT HAVE CANCER” “YOU ARE FAR TOO YOUNG TO BE DISABLED”
Do you feel Judged as a mother ? Well, you are not alone. All parents are often judged for their parenting approaches. "Why are they still breastfeeding" "why are your kids so shy or anti social" "why do you still have to put them to sleep" "why you dont let them cry it out” and so on. Humans judge a lot, we are all predisposed to this natural tendency. There is no one parenting approach or style that fits all. What works for some kids might not work for others. Just like in autism there is no one size treatment fits all. There are different approaches and you don't have to feel guilty for having a different style. You don't have to follow the stereotyped parenting scripts or books to be a good Mom or parent. It is also important to emphasize the importance of parenting approach. While there are many things that influence a child's development, how you parent plays a big part. Researchers say it's important to ensure your parenting style is supporting healthy growth and development, because the way you interact with your child and how you discipline has a lifelong impact. Different tunnels can lead to same road, so is parenting. Don't feel quilty for following a different path as long as it will help you and your child reach the desired destination. Follow your heart and mother's intiution as they will never fail you.
Nature is one of the best therapies and it happens to be free. Nature is often overlooked as a healing balm for emotional hardships in autistic children or adults' lives. Nature can be so beneficial for both neurotypicals and neurodivergents especially those struggling with anxiety, depression or emotional dysregulation. Autistic children and adults benefit a lot from nature. Many studies have proved that exposure to nature provided motor- sensory, and emotional benefits. Nature can help in self regulation and impulse control. One of the more in-depth studies of autism and nature connection showed that when children with autism were regularly engaged in outdoor activities, they experienced improvements in seven key areas: social interaction; communication; behaviour; emotion; cognition; sensory issues; and physical activity. How autistics can benefit from Nature therapy: - Taking long walks in nature - Doing outdoor activities for kids - Having some of the therapy sessions outdoors - Reading, drawing, painting or stimming in nature - Listening to music outdoors in nature - Having picnics in nature Nature is not only relaxing for autistics but also an exciting place for them to be. They can even focus better on their special interests if any. Many autistics are fond of nature and it's elements. Whether it is a long walk by the lake, cycling in the mountains, reading under the huge tree in autumn while hearing the sound of leaves falling, drawing by the riverside, listening to music, reading or just chilling while having a small picnic outdoors it will be beneficial and helpful in so many ways.
There is often a gap between what autistics are saying and what they are thinking. Verbal Autistics or neurodivergents in general get asked a lot about their speech, why does it sound peculiar and most of the times misunderstood by neurotypicals. Many Neurodivergents struggle with this issue as most of the times the words coming out of their mouth are not what they truly mean but what they can access at that time. Naoki Higashida has written about this topic in his book which is one of my favorites "The reason I jump". He emphasizes that the words coming out of his mouth in certain situations are the ones he can access as he have used them recently or because they left a lasting impression on him recently. Some autistics are not good in sorting out what they want to say during a conversation, hence their sentence or words can be misunderstood or judged as peculiar. Neurotypicals can easily sort out what they want to say in real time during conversation, so they would never even imagine that this might be a problem to someone else. Many autistics also struggle in certain situations with verbal junk that has nothing to do with the situation at hand. This is not the same as vocal stimming (echolalia, palilalia ) it doesnt have to be repeating own words or someone else words. It could be just saying irrelevant words not related to the same topic during conversation. Unfortunately, neurodivergents are often judged by their language and words. Just accepting the fact that there are language or speech differences is the first step foward in inclusion. Remember "Life is just like a fruit salad, it wouldnt be the same with only one type of fruit."
Internalized ableism is when we project negative feelings onto ourselves. Ableism is an ideology that shapes how all of us make sense of our bodies, relate to others and our environment and it is judged by others in society. Ableism is one of the most visible and common forms of oppression and domination. Ableism is discrimination against people who have disabilities. WHAT IS INTERNALIZED ABLEISM AN /2 WHAT DOES IT LOOK LIKE ? • A practice where disabled people internalize the ideas and prejudices of society that see "disability " as other, as something undesirable and tragic. • Internalized ableism can make people feel shame or self hatred for having a disability. • Can take the form of doubting one's value in society as the disabled feels like a burden. • Internalized ableism can prevent asking for help due to the stigmatized opinions. Internalized ableism can take the form of doubting self worth resulting in disfunctional relationships. SIGNS OF INTERNALIZED ABLEISM • I am broken and need to be fixed • I will never get a good job as I am disabled • I will never be in a relationship, I am not good enough • I feel I am a burden on everyone I know. • I am defined and confined by my disability • I am asking for too much • Other people may have it worst I should not ask for help and trouble anyone. • I don't have visible disability, hence I do not need any accomodation. For disabled people to heal from internalized ableism able bodied people need to do their part to support and amplify their struggles for disability justice. We need to commit to taking bold steps towards overcoming habits of internalized ableism. Having said that, I know for a fact that it won't be an easy journey at all but it is worth the effort. All of us regardless what our bodies or brains can or cannot do, can make baby steps towards making a more hospitable world for everybody.
We always discuss challenges and struggles faced by autistic adults or children but rarely do we highlight the challenges of parenting autistic kids or adults. Parenting in general is associated with various challenges. Being a parent to an autistic child may further add to the task. It can be quite overwhelming for the parents too not only the child. They always say parenting doesnt come with a manual. The truth is there is a manual in fact there are plenty of books, manuals, articles that explain all about taking care of a neurotypical child. However, parenting an autistic child can be totally different experience as each child is unique with unique differences and challenges. There is no one size manual that fits all, so parents are usually on their own or have limited resources. There is a lot of guilt associated with parenting autistic kids. The mom guilt is common but when having autistic child it is multiplied. There is always self doubt and guilt. So many questions rather than answers, despite the considerable amount of valuable online information in blogs, books and online. Parents of autistic kids need to find support too. Here are some of the common supports that they might need; 1- Finding support group with other parents of autistic children. 2- Try to connect with autistic adults and autistic parents who can help a lot. You can visit the self advocacy network, autistic blogs, and social platforms. Read more books about autism written by autistics. 3- Try to find neurodiversity affirming therapists and professionals 4- Find time to personally recharge. If you dont take care of yourself you cant take care of your child. Selfcare is important so find time to practice it.
Autism diagnosis is sometimes missed and the traits are overlooked until late childhood, adolescence or even adulthood. It is possible for clinicians, professionals, parents or carers to overlook the traits. Below are reasons why autism can be missed 1- A lot of Stigma is attached to autism, mental health and disabilities in our societies. Many individuals prefers to live undiagnosed and live in denial just to avoid the fear this social stigma has created. This also can affect parents of autistic kids, they can sometimes overlook the signs or delay diagnosis. 2- Masking symptoms is another reason for missing autism diagnosis. Many autistic individuals are so good in masking which makes it harder for professionals to diagnose. The ability to do well in school, college or at work. Communicate effectively and pass all IQ tests can send parents or professionals to the wrong path assuming that everything is fine. If the obvious external signs are not present making a diagnosis can be challenging. 3- Many Researches suggested that that females are so underdiagnosed. Are girls less likely to be autistic? Or are they better in masking their traits? 4- Early misdiagnoses is another reason to miss autism diagnosis. Many autistics were misdiagnosed with other conditions or mental health conditions. A person with another diagnosis will not be properly evaluated for autism until later in childhood or even adulthood. 5-Comorbidities and co-occuring conditions can make it even more complicated. It is not uncommon for someone to have received another diagnosis which might be a comorbid condition while the underlying autism went undetected. 6- People might not receive a diagnosis due to finances and low incomes. 7- Cultural barriers can be another factor. In some communities, behaviors associated with autism are not considered to be problematic. Example; it is not surprising to hear that an immigrant child is not fitting in with another country cultural norms. 8- There is no standard diagnostic criteria for adults who are suspected to be autistic