Autism representation matters, but is that it?

Talking about autism that is not your diagnosis but someone else’s is a bit like walking a tight rope. Talking about it can have many faceted reactions, it can normalize neurological differences and increase acceptance. But it can also do the opposite, increase the stigma.  Talking about it can lead to quick assumptions. If you share the hard stuff and share their most vulnerable moments for the whole world to see you are not respecting their privacy.  Would a person who suffers from anxiety like to be videotaped when they are having a panic attack? Or would an epileptic like to be photographed while having a seizure? These are hard questions to ask yourself.

But not talking about it doesn’t help either. Then, you are sugar coating it, not acknowledging the hard stuff. The struggle that an autistic person has to go through dealing with things that many of us take for granted. Like brushing your teeth twice a day when you DON’T have a sensory sensitivity. Or walk into a public bathroom with electric hand dryers.

So talking about it can help. But what is important is to realize that when I talk about Ali I talk about how I see it. I cant speak for him and don’t have a first hand experience. And so is the representation of autism in popular culture. When you see one autistic character in a tv show or a movie, it doesn’t stand to represent ALL autistic individuals.

What is important is to understand that autism isn’t black and white. But more often than not it is seen and portrayed in popular culture as either math geniuses, or savants like Raymond Davis (played by Dustin Hoffman) in “Rain Man”. Or you see the other extreme, the non verbal stimming kind with limited to no sense of the social world outside their bodies. The reality can lie anywhere from this extreme to the other and anywhere in between.  A person on the spectrum may have excellent writing skills but may struggle with basic math, or they may have excellent computing skills but may have a hard time using expressive language. The popular representation of these extremes can be misleading and autistics can have a hard time identifying with either of them. Representation is important but it needs to be taken with a grain of salt because an irresponsible representation can breed even more stigmatization and stereotyping.

So how do you approach autism and autistics?  The answer is simple. You accept it. You accept that it comes in different shapes and forms. You don’t stereotype. You don’t assume their personality because they have autism.  You acknowledge their strengths and struggles. You don’t live their experience and live inside their bodies so you don’t judge them based on their diagnosis just as you should not judge someone based on their beliefs, gender or race. You acknowledge them for who they are.  It really is that simple.

Inclusion is not a favour

We often hear about how putting the autistic child in a mainstream environment can help them by providing increased opportunities for the autistic child to learn from neurotypical peers. Some say with a desire for them to mimic typical behaviours. Others to reduce “autistic” behaviours etc.  But what we don’t often see talked about enough is how neurotypicals can benefit from being around autistic individuals. Allow me:

• They learn compassion.
• They learn to be accepting of differences. They learn how and why it is okay to be different.
• They learn honesty and fair play.
• They learn more than one way to communicate.
• They learn order and organization in day to day life.
• They learn to be creative in the way they can play, communicate and interact with a child who plays, communicates and behaves differently.

Inclusion isn’t a one way street. We all come out of it learning a thing or two about others. It is NOT a favor to the autistic community as it is so often portrayed. It is teaching the larger non autistic community invaluable lessons and first-hand experience of how unique and different the human mind can be. And how we all have so much to learn and give.

IEP for the uninitiated

Back to school season is in full swing. For many special needs families it also means it is IEP season. An IEP or (Individualized Education Plan) can look different in different parts of the world. It essentially means a tailored plan to suit the individual needs of the student. It may include a modified curriculum, some measurable goals and targets that may be educational goals like math or reading, some social or behavior goals to target areas that need attention. It can vary vastly depending on the child’s individual needs and the school district, city or country.

While in Pakistan I was introduced to a very basic IEP plan for my then preschooler. I hope things have improved and grown since then. Nonetheless some private schools in Pakistan are providing IEPs for students with additional needs. If your child has an autism diagnosis, ADHD, dyslexia or any kind of learning or language disability you can ask schools if they provide an IEP. The schools are required to run evaluations and assessments based on suspected disability, or work with a diagnosis provided by your child’s pediatrician and psychologist/psychiatrist etc. Those evaluations will determine if your child qualifies for an IEP.

In the American school system the IEP is a formal legal contract devised with a bunch of experts on the team. It will generally include the parents, the student if she/he is old enough to attend and  contribute, the school psychologist, the special education teacher, the general education teacher, the administrator of the school, a representative of the school district, and/or a behavior analyst, speech language pathologist , occupational therapist  depending on the child’s needs.

For many first timers an IEP meeting can be really intimidating. The legal jargon can set you off. The clauses in the document can be confusing and you may have a hard time remembering everyone’s roles and duties. You may wonder what you can request for and what may be pushing it too far. After the initial meeting where you get together to discuss, you meet again to devise measurable quantifiable goals that can be measured quarterly/every trimester etc. to see how far they have been helpful. It is my third year doing this and honestly, I still feel inadequate.  I get a lot of help from many different sources but one thing I do is read the IEP cover to cover before a meeting, know exactly what the goals are, how many of them have been met, how many still need working on, if any goals have become obsolete over time, or if new issues have come up that need attending to etc.

One piece of advice is no matter what part of the world you are, even if you may or may not have access to an IEP, remember you are your child’s biggest advocate. The experts may be experts in their field and know their job very well but you are an expert when it comes to your child. There will be people who may have had limited experience with your child and even those who only know your child on paper and may be meeting them for the first time yet they will be part of the decision making process for your child. Let them know your child’s strengths and areas they need help with. You are part of the team and an equal in the decision making process so do not feel like you need to accept everything they tell you. They have their legal and financial limitations too, understanding that will help you keep realistic expectations. Nonetheless keep an open dialogue. Throw ideas and try to find solutions. Understand that you are all on the same team in providing the best possible help to your child in reaching their utmost potential.  

Marriage with a side of autism

Marriage is hard work. Add autism to the mix and you have got yourself a never expiring ticket to a roller coaster ride for the rest of your life.

Easy to say the hardest curveball life has thrown in our marriage has not been Ali’s diagnosis, it has been our reaction to it. Our inability to understand it, and accept it. Yes it affects every part of your life. It affects your marriage. It affects your day to day life. It alters your life vision. It affects your other children, it affects your relationships with people.

What it doesn’t affect is how it was meant to be. Ali lives his truth every day. No one I know comes even close to what magnificence it is to be your truest self every single day.

The earliest days were the hardest. As a couple have mourned together and mourned alone. We have been angry, hurt, frustrated, and helpless. Never a position anyone ever wants to be in. We have faced criticism and judgement. We have answered invasive, insensitive questions. On top of all that we have mourned the “perfect” child we were “supposed” to have. We have mourned the life we thought he deserved. I am not lying when I say it felt like your heart has been ripped to pieces. I don’t feel like such a martyr anymore. I now know that perfect is subjective and Ali has taught us that what we thought he needed wasn’t real or true for him. It just wasn’t his truth. And we needed to be okay with it.

Time has been so healing. It has brought understanding and empathy to us. Best of all it has brought acceptance; and peace at heart.  Life is very uncertain but why make it any more difficult by overthinking? Why let insensitive, judgemental people get to you? Why not use your energy to build your life and your family? Why fight autism? Why not facilitate your child to be the best version of themselves? Why not be more grateful rather than mourning for what was never ours?  

Special needs and clothes with tags

I remember as a child I used to hate the tags on the clothes. They would drive me crazy and sometimes I would take a scissors to them to get rid of them. But then the jagged edges rubbing against the back of my neck would drive me insane. I also remember hating turtle neck sweater as a child. I remember how hard it was to put them on and how quickly I overheated in them. I have always preferred comfort over anything else. To this day I cut off tags off my clothes now obviously with more precision.

With autistic individuals, it cannot just be annoying, it can be the difference between having a good day versus having a bad day. Sometimes it can be hard for them to communicate their discomfort. Sometimes it can be hard for them to tell us that this hurts or that itches. Many autistic kids are super sensitive to sensory input. Try to imagine yourself in their position before making a judgment about their behavior. Their super sensitive body feels this more profoundly than you. They don’t have the right words to communicate to you how that feels. You are placing other demands on them while they are already struggling or telling them to calm down. (Who, in the history of mankind, has ever calmed down after being told to calm down?) They feel misunderstood and you feel defeated. Nobody is having a good day.

Breathe. Think of all these possible physical causes before you write them off as “difficult”. They are not testing your patience. Nor are they deliberately disobeying your command. They are trying to make sense of this world that has so much sensory input; more than what their little bodies and minds can decipher. Provide them with comfort and let them calm down on their own. Provide them with positive reinforcement once they have managed to calm down.  

Difference between a tantrum and a meltdown and how we tackle both

It is important to understand the difference between a tantrum and a meltdown. A tantrum is when a child will throw a fit over something that he does not like and will seek for gratification and/or attention. And that may go away as soon as that need is gratified. For most people as they grow older, they learn to regulate their emotions better and the tantrums slowly fade.

A meltdown is when a person becomes so overwhelmed by something that it becomes hard for them to control their emotions. And a meltdown may not go away when the antecedent goes away. It can be a reaction to overstimulation. The sights and sounds may be too overwhelming, a place may be too busy, the lights may be too bright, too many thoughts may be crossing their minds at the same time, too much information may be overwhelming and confusing etc. A child may simply be tired, hungry, hurt etc and may just be having a hard time dealing with these big emotions.

There is a fine line between the two and we experience both. However it is important to identify what it is and act accordingly. We go by what the experts call “ABC”. Antecedent i.e what caused it, the behavior itself i.e crying, aggression etc and the consequence i.e how you deal with it. Ideally, a tantrum should not be given any attention. If the behavior is ignored it slowly fades away. If it is fed with attention and gratification it is strengthened and leads to bigger tantrums.

However with meltdown it always helps to put the person in as calm of a situation as possible. As there is no purpose or end behind the behavior it is okay to provide the person with as much comfort as possible. Avoid too much closeness if that causes distress. Provide them with what calms them down. What works for us is a dark room with lots of blankets and squishy toys. We also use lots of sensory play.

We also wait it out. If it is attention seeking, it helps to ignore it to the point when the child realizes it no longer works. If it is a meltdown it gives them the time and space to calm themselves down. It is not limited to autistic individuals but to every kid and I use the same technique with my daughter as well. As a general rule it is a good idea to provide as much attention and positive reinforcement as you can but give them  space when they are having a hard day.

Autism and food aversions

We have dealt with food aversions for a long time now. It started when he wouldn’t transition to solid foods as a baby. What we thought was extreme picky eating was in fact food aversions. I didn’t realize for a long time that there were multiple reasons for it. Transitions can be very hard for him. If he eats a banana every day for snack he will want a banana every day until something more appealing comes along. And it can be months or even a year until that happens. So transitioning him from the foods that he was familiar to must have been traumatic for him when I look back in hindsight.

Then there were sensory issues. The textures of different foods could be revolting, the smell could put him off. As an extremely sensory individual his responses to certain sensory stimuli are heightened. That means while he may love some sensory input like spinning, rocking, slime and kinetic sand etc but the textures of some foods would be off putting to him.

Then there can also be motor skills challenges. Holding a spoon to scoop up food requires certain motor skills. Using a fork to stab food to bring it to your mouth without dropping, using a straw to suck up drinks, we have been through it all. And he has been hesitant and resistant to all. We worked from him being force fed (not proud of that) spoonfuls of food to all the way to independent eating. There were a couple years in the middle when he would happily eat if we fed him but would flatly refuse to eat on his own.

He was hesitant to try and sometimes his inability to eat a certain food a certain way would lead to frustration and anger. Eating noodles would lead to a meltdown because he wouldn’t know how to eat these weirdly long things.  Which eventually led to only a few tried and tested safe foods that we knew he wouldn’t mind the texture of and would be fairly easy for him to eat independently.

We have come a long way since then. He is more comfortable with the use of utensils now. He is a little more open to trying new foods. Last night he ate two baby carrots that he would have fought against earlier. So we welcome that change and that willingness to experiment. We celebrate it. A couple of years ago he wouldn’t touch a popsicle. He would scream because he wouldn’t tolerate the stickiness, the cold, and the possible brain freeze. He would struggle with how to hold it and how to eat it. Today he tolerates it. That’s a huge win around here.

It is funny how autism puts everything into perspective. It makes you appreciate the small things in life. Like popsicles on a hot summer day. And what a blessing this shift in perspective has been.

To you and the vein throbbing in my forehead.

There comes a point in your life when you let go of all the excess and hold on to only what is most important. Be it people, relationships, places or objects. There are friends and then there are your ride or die friends. Who stay with you no matter what. Who you can count on to be there for you day in and day out.

One of those for me is my husband Zain. And the other one, you guessed it: is the throbbing vein in my forehead. They will be there. Omnipresent. Annoying. They will be by my side even when I would rather be left alone. They are the ones that keep me going. They are the ones that I wake up every morning to and the ones I retire at night with. They are the ones that make me take pain killers but also the ones that keep me hustling.

Stress in your thirties is real y’all. And marriage is weird. One day you decide to live with this person and choose to complain about everything and argue over who got the least amount of sleep last night.

But almost 10 years into marriage (or is it 9?) you settle into a level of comfort. You “tolerate” each other’s Netflix choices and the fact that the towel never WILL go on the towel bar. But you learn to live with it. So is the stress of day to day life. In the process my nerves may have taken a beating but they have come out stronger. I have learned to accept stress like I have learned to live with his MANY annoyances. That throbbing vein lets me know I am human and alive. And that wet towel lets me know he is around and I can count on him to listen patiently while I whine and rant and rage-clean. May be one day he will hang it up without me telling him and then we will sit and have a nice chat about the weather or the current political climate. (One can always dream). But for now I am enjoying this crazy wild ride called life.

Get to know him beyond his Autism

I often find the waves as a perfect metaphor for autism. Some days the tides will be mellow and you can go far with them, the other days they are all encompassing and honestly you can only wait it out while making sure your feet are planted firmly on the ground.

Autism and certain behaviours come as somewhat of a package deal.  Stimming, repetitive behaviours, “OCD like” behaviours, lack of attention or willingness. However, these behaviours do not define autism or the person. They may come and go. That does not mean autism comes and goes. Autism is substantial and stands its ground.  How we work with it is to make the most of the tiny windows that pop open every now and then when he is most open and willing to cooperate. That is when we play and learn the most. And then there are days when the repetitive behaviours overrule his ability to concentrate or cooperate. That is when we put on our survival mode helmets and do the bare minimum. It is important not to confuse Autism with OCD or ADHD or any learning or developmental disability. They can overlap but they do not all combine to form Autism. It is also important to separate the individual from the label.

This summer we have been making strides with his self help and independence skills. We are noticing the hard days are few and far between. His coping skills have improved so much and I couldn’t be prouder of how far he has come this past year. His willingness to make eye contact when he tries to have a conversation with you is seriously the best reward ever. But as a self proclaimed veteran, I also know there will be hard days and as we celebrate overcoming certain targets new challenges will come up every day. Those that will require a new set of skills on both my end and his; and we need to be prepared.  

Read up on Autism. Research. Look around to see if someone could benefit from your understanding and help. You never know there may be a loved one who may be silently struggling because they could never get the help or acceptance that they needed. In a world where you can choose to be anything choose to be kind.

Stop telling me how to “cure” my ASD kid

When you tell a mother how to parent her child differently you are telling her you are doing it all wrong. You are telling this to somebody who probably already doubts herself multiple times a day. Who is already guilt ridden on how her child deserves a better parent and a better friend.

When you tell a mother with a sick child on how to take care of the child better you tell her she is not doing enough and she is failing as a mother.

When you ask a woman who is longing to have a baby when she is having a baby or how she could improve her chances you are telling her she is not wanting it enough.

When you tell a mother to discipline her child better you tell her that her child is imperfect and needs improvement. No mother wants to hear that.

When you tell an autism mom on how to “cure” her child you tell her that her child has a “fault” that needs correcting. You would think 5 years of me blabbering on about how autism is neither a disease or a sickness would shut people’s mouths, but here I stand today. Still being told how to cure my son. Still being recommended medicines by people who only first heard the word autism come out of my mouth. Still being asked if he is showing any “improvement”. Still being told exercises and remedies that only mean one thing to me: that I am not trying hard enough.

When you tell a woman she will be “complete” when she marries, or has a kid, or has two kids, or lands that perfect job or reaches that ideal BMI, you are telling her she is incomplete. That she is not an entity but a product. A to-do list with boxes to check.

Stop telling mothers how to raise their kids. Stop “telling” women.  Just stop.