Congratulations! A Letter to Parents of Newly-Diagnosed Autistic Children

Someone who used to go to church with me recently contacted me because her son has been diagnosed as being autistic.  She asked what she should do.  Don’t do ABA! I said, and, I’ll get back to you later with more.  Well, it’s later, and, as it turns out, I have quite a bit more to say…….

Dear Lucy,

Congratulations!

You have a beautiful, bright child with unlimited potential.  And despite what doctors may or may not have told you when they told you his recent diagnosis, this fact will remain the same until Peter turns 18, at which point he will be a bright, beautiful adult with unlimited potential.

Also: welcome!

Welcome to the autism club.  It’s not a club that any neuro-typical parents ever want to be in, and many will denigrate.  They will say that you don’t want autism in your life, that it’s a burden, it’s too hard, they are tired of fighting, they are tired of their child’s behaviors.

So I’m asking you, firstly, to stop listening to parents.  With few exceptions (squidalicious, diaryofamom) they will not paint a very positive view and they will undoubtedly exhaust and overwhelm you.

Seriously.  At this point in your life, other parents of autistic kids have nothing to offer you.  They don’t know Peter, they only know their own child.   

Listen instead to autistic adults. We are the ones who have been there.  We are the ones who have years of experience in every kind of therapy imaginable and who can tell you, long-term, what worked and what didn’t.

Oh, and you’ve probably noticed this by now, but Peter doesn’t have autism.  He’s autistic.  The same way that you don’t have whiteness, you’re white.  It’s called identity-first language and is preferred by the vast majority of autistic adults. Google it to find out more.  (In future in this letter this will be abbreviated to GITFOM.)

Secondly, start listening, and learning, from Peter.  He may not communicate in a typical way, but he will still manage to tell you what is really important.

Be prepared that your life will be lived at a slightly different pace than before.  It will be slower, more meandering.  It will take you longer to get places and longer to leave.  It will also be a deeper, richer journey, and you will start noticing wonderful things about the world that you never knew before.  Peter’s interests will lead you to sections of the library and internet and quite possibly the planet that you had no idea existed. 

What are his interests, by the way? I’d really like to know, because his joy in his interests will be like an exploding star, so wondrous, so bright that it overwhelms you, and it overwhelms him, too.  He may start to flap or run around in circles.  That is called stimming, or self-stimulatory behavior.  The doctors may tell you that that’s not good, that you should discourage it.  That’s utter and total nonsense.  Stimming is a physical manifestation of emotions which are too big for the body to contain.  It can indicate sadness just as much as happiness. 

Let Peter delve into his interests. Do not limit him in how much time he spends on them.  Relate other areas of your life to them.  Let him decorate his room and parts of your house with relevant materials.  Buy him gifts related to his interests.  Treat them as seriously as you’d treat the thesis subject of a doctoral student, because to him, they are.  

His interests may change over the years.  Some may fade out and disappear, some may fade and remain as hobbies or things that make him just plain happy, not joyous.  Expose him to as many things as you can, as many experiences as he can handle.  Let him know that the world exists for him to explore, and share his joy in acquiring new knowledge and in sharing it.

Thirdly, spend as much time outdoors as humanly possible.  The outdoors is the natural environment for autistic people.  We thrive in woods, seashores, meadows, deserts, and mountains.  The loud electricity that surrounds us in the city, the busyness, the constant hurrying, does not suit our pace.  We take deliberate steps and look before we place each foot.  Nature is its own reward.  Spending time in nature will calm him down and tire him out.  Simple exploration of wooded areas, with no toys or props other than what you find, should be done for at least a few hours a week.  If possible, put up a tent or fort in your yard, let it grow a bit wild with the trees, and let him be free.  In touching sand, mud, rocks, and gravel, in building with sticks and string, in drawing patterns in the sand, in picking flowers and leaves, he will get occupational therapy.  In stomping through different textures of ground, in splashing in puddles, swimming in oceans and ponds, climbing and swinging from trees and jumping from one spot to the next he will get occupational therapy.  Walk on the earth, not on pavement. Go barefoot if it’s safe. When you feel he can be trusted with one, give him a sturdy kid camera if he wants it and encourage him to photograph whatever catches his eye.  It will be another window into his world for you.

Teach him to swim, if he can’t swim already.  Autistic people are drawn to water in general and you live near a river.  He must learn to swim, and swim well, as soon as possible for his own safety.  Teach him water safety, that the river is dirty and polluted (because it is, let’s be real here) and to stay away from it.  But give him opportunities to immerse himself in baths and pools and safe water sources as much as possible.  Push to get swimming added to his IEP as a physical therapy goal.  It is a very frightening fact that autistic children are more likely to drown than neurotypical children, GITFOM.

Teach him that he is different, (although there is no doubt that he already knows) and his difference is called autism in the same way that your difference is called blindness.  Expose him to autistic adults and autistic culture.  Treat accommodations as a matter of basic human decency.  Learn about disability culture and history, and add it as just another kind of justice, like justice for LGBT people or African-Americans or undocumented immigrants. Teach him that his difference may make some things harder, but it will make other things easier, and that together, you will always be able to find a way.

Let Peter excel.  Autistic people have common strengths, like our memories, our ability to express ourselves unconventionally, the way we can hear things others can’t, feel things others can’t.  Figure out how he learns best, visually or verbally.  Learn that he may not express emotions the way that you expect him to, but that doesn’t mean that the emotions are not there.  He simply shows his empathy in different ways.  Don’t ever, ever let anyone tell you that autistic people do not feel like neuro-typical people do, or that Peter *must* be forced to do this or he will never do it on his own.  That is pure nonsense.  Peter will do what Peter will do when Peter is ready to do it.

Unless a legitimate medical doctor truly thinks there is a reason for it, don’t bother with quack cures or cutting out gluten or dairy or any of the other ridiculous, expensive cures that charlatans will try to sell you.  Peter is already perfect.  He doesn’t need to be cured, he just needs, like every other child, to be loved.

However, be aware that autism does affect the entire body.  Peter may be under or over responsive to sensory stimuli.  He may not feel hot, cold, or pain, or over-feel them, or not respond to them.  His diet may be limited due to sensory processing disorder and his gut may be messed up.  Do get as much fiber and nutrients as possible into him, and if you think he’s backed up, miralax has the world miracle in it for a reason.  GITFOM, or ask your doctor. 

I’ve yet to meet an autistic person who is not an artist in some way, be it in writing, painting, minecraft building, legos, or clay.  Expose him to every type of art there is and then some.  Make every kind of playdough you find on the internet until you find your favorite (except the marshmallow one, that one is a total disaster.)  Incorporate different textures, sounds, and scents into art as well as visuals.  Make music every day.  Sing.  Singing is a great, great way to teach autistic kids prosody and get them to have more fluent speech.

Peter will probably be clumsier than other kids.  The physical act of writing will take him longer to learn.  Do teach him, but also give him access to a keyboard so he can express himself in words without having to expend the enormous effort that physical writing takes.  Be aware that autistic people have a remarkable capacity for unintentional self-injury in ridiculous ways, but also, if you see any bruises that you can’t explain, find out where they came from.  Children with disabilities are more likely to be abused than their nondisabled counterparts.  Make it clear to his teachers and caregivers that you expect an explanation for every single mark that you see on him.

Teach him about his body.  Teach him to trust it.  That evolution made him who he is and that’s a wonderful thing.  Talk to a preschool OWL (Our Whole Lives, GITFOM) teacher for resources. Get him to know his body and that it is HIS, his alone.  Teach him to say no, early and often.  Respect his no.  Tell his teachers to respect his no.  This is a crucial, crucial lesson in preventing sexual abuse, which is all too common for people with developmental disabilities.  I didn’t know that I could say no as a kid, and ABA programs teach compliance, not bodily autonomy.  If he wants hand-over-hand help, that’s fine.  But if he wants to struggle for months to tie his shoes, let him – or buy him Velcro ones. 

Unless it is a matter of physical health or safety of him or another person, for example, vaccinations at a doctor’s office or preventing him from running into the river, nobody should be touching him without his consent.  This includes relatives who want a hug or a kiss.  Peter doesn’t owe them anything.  When you let him choose who to interact with, you are telling him that he is a person worthy of respect, and that you will listen and respect him.  On the other hand, if he gets violent towards you or is playing too rough with anyone, do not hesitate to remove yourself from the situation and explain why.

Your doctor may have said that Peter isn’t hitting certain milestones.  This is probably true, but it’s also true that he will almost certainly hit them years later.  Many neuro-typical kids go through a ‘why’ phase at three or four.  Many autistic kids do it as tweens or teenagers.  It isn’t a matter of going through the alphabet in the wrong order, though – it’s a matter of it being a different alphabet altogether.

The only absolutely necessary therapies are 1, whatever teaches him to swim and 2, communication/speech therapy.  Get him an evaluation for an alternative communication device if he seems to be frustrated with his communication skills – see www.niederfamily.blogspot.com for more, best site ever on the importance of alternative/augmentative communication, or AAC.  When he communicates more, he will be able to tell you what he needs, what he likes and doesn’t like.  Autistic people do *not* learn things if we are miserable but we *do* love to learn.  Your goal in all therapy should be making sure that Peter is happy and learning.  It doesn’t necessarily matter what he is learning. 

Push self-help skills.  Don’t do everything for him, or he will go through life like an entitled prince.  Show him how everyone in the family works at whatever they do, and he has to work to take care of himself like everyone else does.  It is much, much easier and faster if you just bathe him and dress him every day, but if you do that you’ll wake up to a teenager who still needs your help in the bath.  Charts are very helpful here.  Put your chores alongside his.  If he shows interest in earning things, you can offer incentives like, a new matchbox car if he brushes his teeth by himself for a week.  (He will need reminders, of course, until he leaves home, but this applies to every child.) 

I’m not going to lie.  Autism sucks sometimes.  It is hard sometimes.  But I won’t warn you about all that stuff because, quite frankly, you’re probably dealing with enough right now. Join the FB group ‘parenting autistic children with love and acceptance’ and if you can’t figure out how to help him through the hard times, ask autistic adults.  We almost always have answers that you haven’t thought of.  For example, many autistics get upset or anxious right before a big storm.  This is because we can feel the dropping and rising of the air pressure and it is really painful.

Be aware that Peter will have some disadvantages due to his autism, but he’s also a white male in American society so he’s already got a huge leg up on the majority of the world.  Do emphasize, early, the importance of looking neat, because, awful as it is, oftentimes people will overlook or excuse the odd behavior of people if they are dressed and groomed nicely.  Of course, don’t torture him with haircuts, let him wear whatever (clean, fitting) clothes he wants, and get all unscented soaps, lotions, etc. 

Don’t push Peter to be like his NT peers, because he won’t be.  He will only ever be like himself.  The chances are high, however, that as he grows older his best friends will be other ‘quirky’ kids, which is why it is important that he knows of his autistic identity early on.  The problem with schools is that they put all the kids together and expect them to naturally form friendships.  That will probably not happen with Peter.  You will need to seek out the parents of other oddballs and arrange playdates.  If there’s another kid who shares his common interests, great.  Don’t just limit him to school friends, though.  Autistic people are really great at intergenerational relationships.  Bring him along to many different intergenerational events and you’ll likely find he connects best with those much older or much younger than him.  That’s fine.  I have friends who are teenagers and friends in their seventies.  It doesn’t matter how old or young a person’s body is as long as their soul is warm and welcoming, and autistic people have a remarkable ability to find fellow members of our tribe.  Remember that a playdate consisting of two kids each on a separate ipad is still a great playdate. 

You are undoubtedly overwhelmed and anxious now.  Somebody has probably said to put Peter in 40-plus hours of ABA (DON’T DO THAT!), or on a special diet, and somebody has probably sent you a stupid poem about Holland which is ridiculous because people are people, not countries.  But you’ve raised Peter for – I actually have no idea how old he is, four or five? – years already and he’s fine.  He will continue to be fine, and so will you.  Just remember:

  1. Listen to him.
  2. Listen to autistic adults.
  3. Don’t abuse him. (see #2.)

 

You’ve got this. 

All the best,

 

Ekie

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