Autism Parent Quotes

Through the blur, I wondered if I was alone or if other parents felt the same way I did - that everything involving our children was painful in some way. The emotions, whether they were joy, sorrow, love or pride, were so deep and sharp that in the end they left you raw, exposed and yes, in pain. The human heart was not designed to beat outside the human body and yet, each child represented just that - a parent's heart bared, beating forever outside its chest.

I know of nobody who is purely autistic, or purely neurotypical. Even God has some autistic moments, which is why the planets spin.

I'll never get to hear her say, 'I love you, Mommy,' like other parents take for granted.

I Have a Dream... someday my son, Zyon and ALL individuals with disabilities will be seen as HUMAN beings. I Have a Dream... someday the human & civil rights of individuals with disabilities are honored and they are treated as equals. I Have a Dream... someday ALL parents who have children with disabilities see their child as a blessing and not a burden. I Have a Dream... someday there will be more jobs and opportunities for individuals with disabilities. I Have a Dream... someday there will be UNITY "within" the disabled community. I HAVE A DREAM!!!

The Internet," [Judy] Singer said, "is a prosthetic device for people who can't socialize without it." For anyone challenged by language and social rules, a communication system that does not operate in real time is a godsend.

I've met so many parents of the kids who are on the low end of the autism spectrum, kids who are diametrically opposed to Jacob, with his Asperger's. They tell me I'm lucky to have a son who's verbal, who is blisteringly intelligent, who can take apart the broken microwave and have it working again an hour later. They think there is no greater hell than having a son who is locked in his own world, unaware that there's a wider one to explore. But try having a son who is locked in his own world and still wants to make a connection. A son who tries to be like everyone else but truly doesn't know how.

I do not think God makes bad things happen just so that people can grow spiritually. Bad parents do that, my mother said. Bad parents make things hard and painful for their children and then say it was to help them grow. Growing and living are hard enough already; children do not need things to be harder. I think this is true even for normal children. I have watched little children learning to walk; they all struggle and fall down many times. Their faces show that it is not easy. It would be stupid to tie bricks on them to make it harder. If that is true for learning to walk, then I think it is true for other growing and learning as well. God is suppose to be the good parent, the Father. So I think God would not make things harder than they are. I do not think I am autistic because God thought my parents needed a challenge or I needed a challenge. I think it is like if I were a baby and a rock fell on me and broke my leg. Whatever caused it was an accident. God did not prevent the accident, but He did not cause it, either.... I think my autism is an accident, but what I do with it is me.

When parents say, ‘I wish my child did not have autism,’ what they’re really saying is, ‘I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.’ Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.

Life-transforming ideas have always come to me through books.” - Bell Hooks

A speech-language pathologist named Michelle Garcia Winner told me that many parents in her practice became aware of their own autistic traits only in the wake of their child’s diagnosis.

Aware adults with autism and their parents are often angry about autism. They may ask why nature or God created such horrible conditions as autism, manic depression, and schizophrenia. However, if the genes that caused these conditions were eliminated there might be a terrible price to pay. It is possible that persons with bits of these traits are more creative, or possibly even geniuses. If science eliminated these genes, maybe the whole world would be taken over by accountants.

We are not “differently abled”—we are disabled, robbed of empowerment and agency in a world that is not built for us. “Differently abled,” “handi-capable,” and similar euphemisms were created in the 1980s by the abled parents of disabled children, who wished to minimize their children’s marginalized status. These terms were popularized further by politicians[76] who similarly felt uncomfortable acknowledging disabled people’s actual experiences of oppression.

Labeling a child’s mind as diseased—whether with autism, intellectual disabilities, or transgenderism—may reflect the discomfort that mind gives parents more than any discomfort it causes their child. Much gets corrected that might better have been left alone.

If we can't start by seeing an autistic child as inherently capable, interesting, and valuable, no amount of education or therapy we layer on top is going to matter.

In these days, doctors know little about autism. They blame it on distant parents who don't communicate enough with their children

It is important to note that the stress we feel as parents is not generated by our adult child with autism, but rather from the failings of the systems in place that are supposedly there to help us. There are caring people in the systems, yet often the lack of options and foresight and inability to plan ahead or provide options for our loved ones are accepted as normal by the systems in place.

The trouble", said Gene, "is that the things that Rosie loves you for are exactly the things that make her think you're too... different, to be a father. She may be a risk taker with relationships, but no woman's a risk taker with her kids. In the end, it will come down to persuading her you're... average enough to be a father.

Autistic thinking is always detailed and specific. Teachers and parents need to help both children and adults with autism take all the little details they have in their head and put them into categories to form concepts and promote generalization.

To summarize this chapter, parents and teachers need to “stretch” individuals on the autism spectrum. They need to be stretched just outside their comfort zone for them to develop.

Then the dreaded words, Your child has autism. These words echo in their heads like a freight train blasting through their hopes and dreams.

Autism is just the surface. What is inside each of us is what matters, autistic or not.

My journey will hopefully help others. Laughter is the best medicine. Be strong.

A diagnosis is not a prediction. It doesn’t tell you what’s possible. It doesn’t change you, your colleague, your child, or your friend. It just opens up tricks and tools to thrive.

I am against the rush to medicalize our children and young people to present as the opposite sex when they are confused or when other conditions such as autism are misattributed as trans.

when I was a teenager I was planning out how to live in the woods as a hermit, to avoid permanent institutionalization. And when I realized that wouldn’t work, I was planning my own death.

I go to all the appointments. All the meetings. I sit with the team of inclusion teachers, occupational therapists, doctors, social workers, remedial teachers, and the cab driver that gets him from appointment to appointment, and I push for everything that can be done for my autistic boy. But I will never have a plan that will fix him. Noah is not something to be fixed. And our life will never be normal. And people always say, oh well what’s normal, there’s no such thing really, and I say — sure there is…there’s a spectrum… and there’s lots and lots of possibilities within that spectrum, and trust me buddy, ducks on the moon ain’t one of them….but …. In this abnormal life, I get to live with a pirate, and a bird fancier, and an ogre, and a hedgehog, and many many superheroes, and aliens and monsters — and an angel. I get to go to infinity and beyond.

The ultimate goal of parents, educators, and professionals who interact with children with autism is to unlock their potential to become self-reliant, fully-integrated, contributing members of society. We have the power to unlock this potential by implementing an effectively structured intervention—that which takes the development of the whole child into account.

Education is supposed to help the child and parents: it mustn’t end up being a kind of holding cell. For this reason, our education must not be overly defined by the views of outsiders, or be unquestioningly compliant with the values and beliefs of specialists. Of paramount importance is that the special needs education be a suitable fit for each and every student.

Diagnoses —such as ADHD, oppositional defiant disorder, bipolar disorder, depression, an autism spectrum disorder, reactive attachment disorder, the newly coined disruptive mood regulation disorder, or any other disorder—can be helpful in some ways. They “validate” that there’s something different about your kid, for example. But they can also be counterproductive in that they can cause caregivers to focus more on a child’s challenging behaviors rather than on the lagging skills and unsolved problems giving rise to those behaviors. Also, diagnoses suggest that the problem resides within the child and that it’s the child who needs to be fixed. The reality is that it takes two to tango. Let there be no doubt, there’s something different about your child. But you are part of the mix as well. How you understand and respond to the hand you’ve been dealt is essential to helping your child.

It is true that Jeremy could see "naked girls dancing" in strip clubs in San Diego, but parents reading this will appreciate that, since our loved ones on the spectrum tend to have obsessive tendencies, I was not about to tell Jeremy that. Obsessions with French fries I can deal with. Let him think he has to travel to Las Vegas to see naked girls dancing.

Sometimes all a parent needs is to know the impossible is actually possible. Hope goes a long way when it comes to autism. Matt gives people hope.

The problem is not my suitability as a partner, it's my suitability as a father.

You have a healthy baby boy! The words ring like church bells in the ears of new parents.

A small step forward . . .every . . single . . .day. The sun is coming up and I am wondering, 'What wondrous thing shall I witness today?

Almost every neurodiverse person I’ve spoken to has been deemed “lazy” numerous times by exasperated parents, teachers, and friends.

Think of all the miserable people you know who can fluently verbally communicate with whomsoever they wish. It does not save them from being unhappy.

In order to communicate, we must have connection.

The only thing we have control over in this life is how we feel.

When we don’t believe something is possible, we don’t give or seek out opportunities for our children to grow.

Indeed, a sense of humour is possibly one of the most important attributes that the parents of a child with fragile X must possess.

Feel positive about your child’s current ability to communicate verbally.

Still, some parents and professionals view these interests as yet another undesirable symptom of autism, one that makes it even more difficult for the child to fit in. Often their instinct is to discourage the child, to redirect his attention and suggest interests that are more socially acceptable and conventional. But discouraging an enthusiasm can be just another way of dismantling a strategy that helps a child with autism feel better regulated—or, worse, removing a source of interest and joy. A more helpful approach is to do as Jessy Park’s parents did and use the enthusiasm as a way to expand the child’s outlook and improve the child’s life.

Anyone who has spent time with a verbal person with autism is familiar with this tendency to repeat words, phrases, or whole sentences, often ad infinitum. Indeed echolalia is one of autism’s defining characteristics. In children who can speak it is often among the first indications to parents that something is amiss in a child, when, instead of responding or initiating with the child’s own language, the child echoes words or phrases borrowed from others.

When others focus on what your child cannot do, see it as an opportunity to focus on who God is and what he can do through you and your child. Sometimes inability is the vehicle for experiencing the blessing of God's powerful presence and provision.

People often said to me what I couldn't do things when I was younger such as sports, writing, mathematics, geography, science etc - I pathway can always be tailored can change and that change itself is possible what did I excel in well art was one of those things of have gone BACK to to move FORWARD and have taken up poetry and creativity something that occupies my mind in way that creates happy thoughts, happy feelings, and happiness all round really. To invest in your strengths and understand but not over-define yourself by your deficits is something that has worked for me over the years and this year in particular (the ethos was always there instilled that I am human being first like anyone else by my parents and family but it has been tenderly and quite rightly reaffirmed by a friend also) it has made me a more balanced person whom has healthy acknowledgment of my autism who but also wants to be known as a person first - see me first, see that I have a personality first. I say this not in anger or bitterness but as a healthy optimistic realisation and as a message of hope for people out there.

Georgia, high-functioning autism is like the marsh, where the salt water and fresh water combine to form a vastly unique and fragile ecosystem. It's a really fine line between "quirky" and "problematic." A gap between "talented" and "not quite right." Somewhere between "cute" and "hmmmm.

Most people love with a guarded heart, only if certain things happen or don’t happen, only to a point. If the person we love hurts us, betrays us, abandons us, disappoints us, if the person becomes hard to love, we often stop loving. We protect our delicate hearts. We close off, retreat, withhold, disconnect, and withdraw. We might even hate. Most people love conditionally. Most people are never asked to love with a whole and open heart. They only love partway. They get by. Autism was my gift to you. My autism didn’t let me hug and kiss you, it didn’t allow me to look into your eyes, it didn’t let me say aloud the words you so desperately wanted to hear with your ears. But you loved me anyway. You’re thinking, Of course I did. Anyone would have. This isn’t true. Loving me with a full and accepting heart, loving all of me, required you to grow. Despite your heartache and disappointment, your fears and frustration and sorrow, despite all I couldn’t show you in return, you loved me. You loved me unconditionally. You haven’t experienced this kind of love with Dad or your parents or your sister or anyone else before. But now, you know what unconditional love is. I know my death has hurt you, and you’ve needed time alone to heal. You’re ready now. You’ll still miss me. I miss you, too. But you’re ready. Take what you’ve learned and love someone again. Find someone to love and love without condition. This is why we’re all here.

I would either head to the playground alone or sit beside her and read—which she said “looked weird.” Though she couldn’t know, those words hurt more than anything else. Feeling that we have let down our parents is a pain anyone can understand. But feeling that one’s innate self is a letdown just slays you.

For me, living on the coast of Georgia, high-functioning autism is like the marsh, where the salt water and fresh water combine to form a vastly unique and fragile ecosystem. It's a really fine line between "quirky" and "problematic." A gap between "talented" and "not quite right." Somewhere between "cute" and "hmmmm.

Don’t fall into the trap of believing that if we are good at one thing, we will be good at some totally unrelated thing. Don’t make it sound like any autistic person has a certain level of skills across the board. Autistic people’s skills are described consistently since the 1940’s as being very uneven. There’s a reason for that.

In the first sixteen years of my life, my parents took me to at least a dozen so called professionals. Not one of them ever came close to figuring out wheat was wrong with me. In their defense, I will concede that Asperger's did not yet exist as a diagnosis, but autism did, and no one ever mentioned I might have any kind of autistic spectrum disorder. Autism was viewed by many as a much more extreme condition - one where kids never talked and could not take care of themselves. Rather than take a close sympathetic look at me, it proved easier and less controversial for the professionals to say I was just lazy, or angry, or defiant. But none of those words led to a solution to my problem.

Like most of the English faculty, she had dealt with suicidal and homicidal students, students with eating disorders who fainted in class, students with depression, cancer, learning disabilities, dead or dying parents, autism, schizophrenia, gender identity issues, romantic heartbreak, and various syndromes involving the inability to sit quietly and read.

While the psychiatric establishment was debating theories of toxic parenting and childhood psychosis, however, Asperger’s lost tribe was putting its autistic intelligence to work by building the foundations of a society better suited to its needs and interests. Like Henry Cavendish, they refused to accept their circumstances as given. By coming up with ways of socializing on their own terms, they sketched out a blueprint for the modern networked world.

I feel intensely. I smell mold and bad food before others. I hear fluorescent lights. Clothing hurts, noises invade, colors take my breath away. My daily reality is governed by too much sensation and not enough sensation. Patterns are soothing because they create order in what feels like chaos. Sometimes I shut down and I lose language. Other times I get overloaded and act it out in ways that get me in trouble. My world is intense, rich, real, sometimes painful and definitely different. Understand

Your child, too, will one day be an adult. For them to live life with the same degree of independence as neurotypical offspring might be difficult, but one day your child-rearing, child-minding days will come to an end. Parents grow older until they can no longer look after their adult children. The period in which we are together as parents and child is finite. So please, while the child still is a child, and while you’re still around to do so, support them well. Laugh together and share your stories. You won’t be revisiting these years. Value them.

I hope that this book will be my way of helping to clear the fog of mystery surrounding autism. And in passing on my personal story I hope to include with it the best and most valuable of what I have learned along the way both as a mother and in my two decades working as a paediatrician. I also hope it will encourage healthcare professionals to be advocates for families who patiently and willingly endure battles every day for the sake of their children. My book describes a wide range of resources and therapies that can help families of children with special needs and autism

We may assume that the socialising aspect of play settings is beneficial to the child. This is an almost universally held belief, particularly in the case of girls. The child with ASD may disagree. It may be that for some children with ASD there really is no point or functional benefit in them attending a group play setting and that the distress caused outweighs any possible benefit gained. This notion is difficult for many parents to acknowledge as they believe that being alone cannot be good for the child; but for many children and adults with ASD, being alone is the best thing of all.

Consider Ricky, a teenage boy with autism who was a talented pianist. Ricky once volunteered to entertain the residents of an assisted-living center. He had never visited such a facility, but his parents told him what a lovely, caring gesture it would be. They also informed him that some of the elderly people he would see had terminal illnesses and other challenges, so surely his music would help to lift their spirits. On the day of his performance, a few dozen residents gathered in a recreation room to listen. Before he sat down to play, Ricky introduced himself, said how happy he was to be there, and added this: “I’m very sorry that some of you are going to die soon.

On occasions the person may appear ill-mannered; for example, one young man with Asperger's Syndrome wanted to attract his mother;s attention while she was talking to a group of her friends, and loudly said, 'Hey, you!', apparently unaware of the more appropriate means of addressing his mother in public. The child, being impulsive and not aware of the consequences, says the first thing that comes into their mind. Strangers may consider the child to be rude, inconsiderate or spoilt, giving the parents a withering look and assuming the unusual social behavior is a result of parental incompetence. They may comment, 'Well, if I had him for two weeks he would be a different child.' The parents' reaction may be that they would gladly let them have the child, as they need a rest, and to prove a point.

The parents in these groups were often caricatured as poorly informed, anti-science “denialists,” but they were generally better acquainted with the state of autism research than the outsiders presuming to judge them. They obsessively tracked the latest developments in the field on electronic mailing lists and websites. They virtually transformed their homes into labs, keeping meticulous records of their children’s responses to the most promising alternative treatments. They believed that the fate of their children’s health was too important to the alleged experts who had betrayed and misled families like theirs for decades. Motivated by the determination to relieve their children’s suffering, they became amateur researchers themselves, like the solitary man who calculated the density of the earth in his backyard with the help of his global network of correspondents.

The enemy is not the blunt adult perseverating on applied behavioral analysis (ABA) research, the enemy is not the parent wearing a puzzle piece t-shirt (but please don’t), the enemy is the system that makes it so exhausting for families to get in-home supports, it is the bias that creates inequity in IEPs, it is the administrative burden that makes county services or social security a multi-year battle. If we fight these systems from the perspective of the community as a whole then we can create a better outcome for everyone. So it’s time—I challenge everyone reading this, both parents and advocates, to put down our swords and hold ourselves accountable for what has happened in the past, but also move forward with forgiveness and humbleness. There is no shame in realizing that you were previously speaking from a less informed place, there is no shame in accepting that we have room to learn and grow still.

MY PROCESS I got bullied quite a bit as a kid, so I learned how to take a punch and how to put up a good fight. God used that. I am not afraid of spiritual “violence” or of facing spiritual fights. My Dad was drafted during Vietnam and I grew up an Army brat, moving around frequently. God used that. I am very spiritually mobile, adaptable, and flexible. My parents used to hand me a Bible and make me go look up what I did wrong. God used that, as well. I knew the Word before I knew the Lord, so studying Scripture is not intimidating to me. I was admitted into a learning enrichment program in junior high. They taught me critical thinking skills, logic, and Greek Mythology. God used that, too. In seventh grade I was in school band and choir. God used that. At 14, before I even got saved, a youth pastor at my parents’ church taught me to play guitar. God used that. My best buddies in school were a druggie, a Jewish kid, and an Irish soccer player. God used that. I broke my back my senior year and had to take theatre instead of wrestling. God used that. I used to sleep on the couch outside of the Dean’s office between classes. God used that. My parents sent me to a Christian college for a semester in hopes of getting me saved. God used that. I majored in art, advertising, astronomy, pre-med, and finally English. God used all of that. I made a woman I loved get an abortion. God used (and redeemed) that. I got my teaching certification. I got plugged into a group of sincere Christian young adults. I took courses for ministry credentials. I worked as an autism therapist. I taught emotionally disabled kids. And God used each of those things. I married a pastor’s daughter. God really used that. Are you getting the picture? San Antonio led me to Houston, Houston led me to El Paso, El Paso led me to Fort Leonard Wood, Fort Leonard Wood led me back to San Antonio, which led me to Austin, then to Kentucky, then to Belton, then to Maryland, to Pennsylvania, to Dallas, to Alabama, which led me to Fort Worth. With thousands of smaller journeys in between. The reason that I am able to do the things that I do today is because of the process that God walked me through yesterday. Our lives are cumulative. No day stands alone. Each builds upon the foundation of the last—just like a stairway, each layer bringing us closer to Him. God uses each experience, each lesson, each relationship, even our traumas and tragedies as steps in the process of becoming the people He made us to be. They are steps in the process of achieving the destinies that He has encoded into the weave of each of our lives. We are journeymen, finding the way home. What is the value of the journey? If the journey makes us who we are, then the journey is priceless.

My parents think I need to see a psychologist. I told them I’m not going to see yet another shrink who isn’t going to help me.

My son regressed. I have my own thoughts on that, just as all parents do. It doesn't mean that I would ever think of another parent as ignorant or stupid if they think differently about their own child. If we are to be a community, then we need to be heard as a community and not as warring factions. Support each other.

have become not just advocates, but emissaries. Being an autism parent today requires not only stamina, curiosity, creativity, patience, resilience, and diplomacy—but the courage to think expansively and to dream accordingly.

Another category is the more confessional memoir, usually written by a parent, describing the impact of autism on the family and sometimes the positive effect of an unorthodox treatment. These memoirs are media-friendly and raise the profile of autism in the marketplace of worthy causes, but I have found their practical use to be limited, and in fairness they usually aren’t written to be useful.

I know many folks who have business cards made up that state that their child has Autism and explain what it is. They feel that educating these judgmental, tisk-tisking, disrespectful types will help. My husband and I always joked that we were going to have our own cards made up that said, “My son has autism. He is not intentionally being naughty or rude, but you are!

When a child plays, he learns valuable skills that he will use as an adult.

As with any profession, someone may look wonderful on paper, but may behave totally differently when presented with challenges.

Dr. Jeffrey Filer, dean of the Harvard Medical School,57 is concerned that a small subset of scientists get research published that is not reproducible. He cites the widely cited paper that got into the Lancet in 1998 claiming a link between measles vaccines and autism. It was not retracted until 2010. In the meantime, scared parents exposed their unvaccinated children and others to greater risk. And the false story was still being propagated by Donald Trump in the 2016 presidential campaign. There is a straight line between fraud in science and the proliferation of political lies swallowed whole by gullible millions in the 2016 election.

SMELL (OLFACTORY): Our nose contains sensory receptors which send information to the olfactory bulb located in the mid-brain. The interesting fact about smells is that a smell can take a direct “shortcut” to the part of the brain that is responsible for emotional memory—the limbic system.

C18: A child is autistic or has Asperger's syndrome. Should we use one language only with the child? Children diagnosed with a specific autism spectrum disorder have a greater or lesser degree of impairment in language and communication skills, as well as repetitive or restrictive patterns of thought and behaviour, with delays in social and emotional development. Such children use language in restricted ways, expecting much consistency in language and communication, and are less likely to learn through language. However, such children may experience the social and cultural benefits of bilingualism when living in a dual language environment. For example, such children may understand and speak two languages of the local community at their own level. Like many parents of children with language impairment, bilingualism was frequently blamed by teachers and other professionals for the early signs of Asperger's, and a move to monolingualism was frequently regarded as an essential relief from the challenges. There is almost no research on autism and bilingualism or on Asperger's syndrome and bilingualism. However, a study by Susan Rubinyi of her son, who has Asperger's syndrome, provides insights. Someone with the challenge of Asperger's also has gifts and exceptional talents, including in language. Her son, Ben, became bilingual in English and French using the one parent–one language approach (OPOL). Susan Rubinyi sees definite advantages for a child who has challenges with flexibility and understanding the existence of different perspectives. Merely the fact that there are two different ways to describe the same object or concept in each language, enlarges the perception of the possible. Since a bilingual learns culture as well as language, the child sees alternative ways of approaching multiple areas of life (eating, recreation, transportation etc.) (p. 20). She argues that, because of bilingualism, her son's brain had a chance to partly rewire itself even before Asperger's syndrome became obvious. Also, the intense focus of Asperger's meant that Ben absorbed vocabulary at a very fast rate, with almost perfect native speaker intonation. Further Reading: Rubinyi, S. (2006) Natural Genius: The Gifts of Asperger's Syndrome . Philadelphia & London: Jessica Kingsley Publishers.

But young parents, educated middle-class ones anyway, are very jumpy these days, they get so much information from the media about all the things that could be wrong with their child - autism, dyslexia, attention deficit disorder, allergies, obesity and so on - they’re in a constant state of panic, watching their offspring like hawks for warning signs.

Just because I can explain how matrilineal descent works, doesn’t mean I can figure out what to order from a restaurant menu. Just because I can be really articulate and give a television interview doesn’t mean I am able to speak up when I’m emotionally distressed or threatened. I

I learned that people won’t believe me when I say I need help, and so I stopped asking. I found passive or covert ways of getting help, which ultimately led to poor self-advocacy. I learned helplessness.

One article I read suggests that the more attention a parent pays to their child, the more likely an autistic person will respond favorably to that parent. Thus a parent may dose an autistic with all sorts of quack cure-alls which may have no effect on autism at all, but the autistic person may be responding favorably to increased attention from the parent.

But then again, if parents are deliberately choosing to kill their potentially autistic children, then maybe they are not good enough to people to be parenting autistic children anyway. The

If it's a boy, parents often elect to abort. The reasoning is that with autism being more prevalent in boys than in girls, one stands a fair chance of getting rid of a potentially autistic child if you abort the boy. The actual “figures” vary, depending on which source you look at, but some estimates say autism is four to five times more likely to present itself in boys than in girls. The

It’s one thing to know in theory how skills work. It’s another thing to put them into practice with nobody guiding you or prompting you along the way. Worse, I was losing skills, including speech, at an alarming rate. The more skills I had to manage on my own, the less energy I had to put into other skills, and the more behind I got. This had been going on since early adolescence, but it really picked up the pace when I moved out on my

And while it is true that those who have been hurt by others form groups of their own, because these individuals are not natural leaders, and are not by nature vindictive or manipulative, they tend to become wallflowers, or they disappear from the net after a while. Parents

I was the hardest working person, getting nowhere, who I knew. The older I got, the more I was able to hide. I was driven into my own world.

It seems that between one-third and one-sixth of autistic people lose major skills in adolescence. Of those, about half will gain the skills back eventually, and half won’t.

There are a lot of things I am not likely to ever learn how to do. Or if I learn how to do them, my movement disorders will prevent me from applying that knowledge. So if I’m going to put in the extreme effort it takes for me to learn and sustain a skill, it had better be a skill that makes me happier (like crocheting), not just a skill that makes things easier on everyone else (like making my bed).

teach to the gift rather than exhausting the student.

Mindset 1 embraces the idea that every child is more than autism. This mindset recognizes that while diagnostic labels serve purposes, they can also lead to errors in perception. There are predictable ways that humans try to make sense of each other, especially when behaviors are outside the norm. Parents, educators, and clinicians working with autistic children are not immune from these false narratives. Recognizing and fighting against them, as well as battling unconscious images we may have gleaned from media, leads to more accurate understanding of each child and to more successful interventions.

You'd have to ask Leyla if you want to know more. She's a psychologist. One of a dozen on board. We don't just want our passengers to survive—we want them to be OK. We're dealing with a lot of trauma. So if you ever need to talk..." "I'll pass." "Bad experiences?" "Sort of." "What happened?" I shrug. "It took a long time to diagnose me." "From what I understand, autistic girls often don't run into trouble until a later age." I bark out a laugh. Oh, I ran into trouble, all right. I barely said a word between the ages of four and six. I hit three of my preschool and grade school teachers. In a class photo taken when I was seven, my face is covered in scratches from when I latched onto a particularly bad stim. Therapists and teachers labelled me as bipolar, as psychotic, as having oppositional defiant disorder, as intellectually disabled, and as just straight-up difficult, the same way Els did. One said all I needed was structure and a gluten-free diet. When I was nine, a therapist suggested I might be autistic, at which point I had already started to learn what set me off and how to mimic people; within two years, I was coping well enough to almost-but-not-quite blend in with my classmates. It's funny when people like Els have no idea anything is off about me, given that my parents spend half my childhood worrying I'd end up institutionalized. At the time, I thought the diagnosis was delayed because I was bad at being autistic, just like I was bad at everything else; it took me years to realize that since I wasn't only Black, but a Black girl, it's like the DSM shrank to a handful of options, and many psychologists were loath to even consider them.

It is often useful to ask another person to come along to meetings at the school as it can be difficult to listen to what is being said as well as to think of the questions you might want to ask. Another person can remind you of what you wanted to get from the meeting. Lucia Santi, head teacher at The Grove, an autism school in Wood Green, north London, and parent of an autistic ten-year-old girl: ‘I’ve lived with autism every day for ten years and worked with it for 20 years.

Parents name a school they want their child to go to – they don’t have to live within the catchment area

some decisions are made on the back of the likelihood of a parent going to appeal and what their case is – so giving the impression you know your legal rights from the off will help in these situations.

For example, a parent might say, “The trash is getting pretty full.” For the parent, a large part of this communication is the emotional load—the suggestion of disapproval that it’s full, the implied idea that something should be done about it, and a hint of urgency because it’s being spoken aloud and action should take place soon.

Kevin Stassu, the parent of an autistic son and the Director of the First Center for Autism and Innovation at Vanderbilt University, said something once that has struck with me: ‘I would not change my son for the world, so I will change the world for my son.

We exist, full stop, no qualifiers needed.

My seven-year-old was diagnosed with PDD (similar to autism) at the age of four. He has always had behavior issues (screaming, tantrums, hitting his siblings, hurting himself), and I’ve tried everything I could to change this—including taking parenting classes, because I thought I was doing something wrong. In December 2011, my husband and I were introduced to the Whole30. Within just a few days, he was like a brand-new child! He woke up one morning with a smile on his face, was very compliant, and would even sit down and do his homework without whining and crying about it. We are so happy with the results of our whole family that we have continued to eat clean foods, and we rave about this program to anyone who will listen.

A common source of disappointment and frustration for parents is the letdown that happens soon after diagnosis. Parents seek diagnostic evaluations both to better understand their child and also to have that child be eligile for services. Many, if not most, parents are not aware that it can take months to find and secure these resources and to get an actual appointment. Additionally, the cost of these services is often far greater than anticipated. One parent, who participated in in-depth interviews by researchers interested in the partnership between parents and providers, had this to say, "It felt like you were being taken to the edge of a cliff. You've been given the diagnosis, you got shoved off the end, and then it was, 'Oh by the way, we haven't got the parachute. You'll need to get that for yourself.' You feel like you finally got there, and you're quite happy, you're ready to fly - but then all the sudden you don't have the rest of the equipment you need to fly with.

Many neurodiverse people suffer from Autistic inertia.[24] The same heightened focus that makes us so good at studying our special interests for hours also makes it challenging for us to get off the couch and attend to the overflowing trash. To an external, neurotypical observer, it doesn’t look like we’re struggling. It just looks like we’re being “lazy.” Almost every neurodiverse person I’ve spoken to has been deemed “lazy” numerous times by exasperated parents, teachers, and friends. People see us sitting frozen, incapable of taking action, and assume it’s because we don’t care or lack willpower.[25] Then they admonish us for being apathetic and unreliable, which leaves us feeling even more paralyzed by anxiety.

Unfortunately, for some children, “gray” thinking doesn’t develop readily. These are the kids who sometimes end up with diagnoses on the autism spectrum, but regardless of diagnosis they’re best thought of as black-and-white thinkers living in a gray world. They often have significant difficulty approaching the world in a flexible, adaptable way and become extremely frustrated when events don’t proceed in the manner they had originally conceived. More specifically, these children often have a strong preference for predictability and routines, and struggle when events are unpredictable, uncertain, and ambiguous. These are the kids who run into trouble when they need to adjust or reconfigure their expectations, the ones who tend to overfocus on facts and details and who often have trouble recognizing the obvious or “seeing the big picture.” For example, a child may insist on

, the mainstream world seemed like a constant sensory assault. The notion that the cure for the most disabling aspects of autism will never be found in a pill, but in supportive communities, is one that parents have been coming to on their own for generations.

As parents, we need to believe in our kids beyond measure. And then believe in them even more. When you have a child who is developing differently, your hope over the years will waver. But you can’t stop believing in them. Because no one will fight harder for your child than you will.

You can't stop or fix everything for your child. You won't always make the choices that are right for them. But there's power in trying, and in the love that fuelds those efforts. There's power in the act of being on their side.

If a woman does not comply, then she is the problem, the ‘feminist killjoy’, the Old Dragon, the Battleaxe, the Termagant, the Nippy Sweety, the Uppity Cow, the Bitch. I’ve come to understand all that, and also to understand that ableism works in the same way, that as an autistic person I am not supposed to make assertions that cause non-autistic people–parents of autistic children, autistic professionals–to feel bad about themselves. If, as an autistic person, I make a non-autistic person feel bad about themselves in relation to autism, it must be because I am a defective person, lacking both an adult understanding of my own condition and empathy for the individuals who are trying so patiently to cope with the consequences of it. I see this very argument–if I must dignify it with that word–used on social media again and again, whenever an autistic person seeks to advocate for autistic people as a group.