The Secret World Of Autism: 10 Things You Need To Know

The author and her son when he was little
The author and her son when he was little

You Will Have A Love/Hate Relationship With The Medical Community

Your child has just been diagnosed with autism. The minute you receive your child’s diagnosis, you will make it your mission to get them the best services available that you can afford. Between the tears and sleepless nights, you will dream of them being cured. You will visit a myriad of experts, read untold volumes of books and connect with other parents in the hopes of giving your child the best life possible. By the time your child is six years old you will be a seasoned veteran and a bona fide expert.

There’s an old saying, “Once you’ve met a person with autism, you’ve met one person with autism.” Most physicians only have the most cursory understanding of the disorder. They are sympathetic, but not particularly helpful. Autism is a complex disorder and when you consider how much time you will have spent studying it to benefit your child, you will understand why. If you have a physician who values your input and acknowledges your value, he’s a gem and a keeper. if not, move on. The last thing you need is someone who makes you doubt yourself when you have so much on your plate.

Physicians are only part of the story. We have had support staff say, “I can’t work with a child like this!” and walk out. We’ve had staff look at us like we were lepers. We’ve had staff comment, “He actually TAKES all those prescriptions?!”. So you will need to develop a thick skin. Keep looking for those gems; they are out there.

A New Cause Of Autism Will Pop Up Regularly

After 23 years, you would think I would stop getting excited when I hear they think they have found a clue as to what causes autism. Leaky gut, heads that are too large, fathers that are too old, vaccines, gluten, GABA, mothers that take antidepressants, spontaneously mutated genes (only for 51% of people who have autism), you name it I’ve heard it all. Don’t get me wrong. It doesn’t anger me it just doesn’t excite me anymore. There have been so many stops and starts in autism research that I’ve just stopped listening.

Everyone Around You Will Have Low Expectations

This was one of the hardest situations for me to deal with. I know people will not want to hear it but I will say it anyway. Teachers have notoriously low expectations for their special needs students. I have had OT’s tell me my son would never tie his shoes and my mom taught him in two weeks on summer break. I have had teachers refuse to teach him the alphabet because it would be way too hard for him even though he was already doing it at home. I had the school psychologist tell me not to bother potty training my son because 80% of people with autism have accidents as adults. (We hired a behaviorist who helped us toilet train him and he learned it in two weeks. He’s never had an accident.)

Low expectations are not limited to the schools. It can be tough to find park district classes that don’t have bubbles and parachute and the goodbye song as part of their routine even though they serve teens and your child left those things behind ten years ago. My son took a cooking class as an adult where he was the only person who could crack an egg. They thought he was a rockstar. No one had thought to teach the other adults to do that because they felt they couldn’t do it so they did it for them. They just assumed; they hadn’t even bothered to ask.

It will be frustrating, and at times demoralizing when strangers assume the only thing your child can do is “can’t”. Remember, you’re asking them to work harder to t each your child and they don’t want to fail either. It would look bad. Keep your chin up and keep their feet to the fire. your child will thank you years later.

Your Child Will Make Progress

When you’re working on prepositions every day, five days a week and feel like you are getting nowhere, don’t give up. You will need to take a longer view. In school, they look back over the course of a year. I always looked back over the course of three years. My son learned more slowly so it took much longer for him to get concepts than we hope for. We really needed to adjust our expectations. Not for could her learn it, or how fast he could learn it, but for how much work it would take for us to get there. Everything was hard and took tremendous effort. It was all worth it in the end.

One of the best things our behaviorist ever said to us was, “What you are working on is really hard. Don’t give up but don’t beat yourself up if you don’t get there, either.” YOu are that little train that could; you will get there.

Your Relationships With Family And Friends Will Change

You will make a wide variety of friends who love and embrace you and your child. You will go to birthday parties, the movies, bowling and video arcades. They will accept you and your child for who you are and where you are. They will probably have a child on the spectrum of their own.

However, relationships with some of your family and friends may be strained. My husband and his mother have never had a close relationship. She flat out stated that she just couldn’t deal with a child who was so impaired. We have had very little face-to-face contact with her since then. She never asks to speak with my son nor does she visit. A birthday gift in the mail would really be asking a lot. Fortunately he is close to his maternal grand parents and can rejoice in that relationship.

I’ve had friends wonder why we didn’t put him in an institution, disinvite him to parties and pray out loud that they hoped their children never had an autistic child. For me, those statements were deal breakers and we are no longer friends. I try and surround myself with people who truly support us in our journey. You may not have the same experiences I did, but you will probably have relationship challenges of your own.

A full 80% of marriages with a special needs child end in divorce, a sad and sobering statistic. I, fortunately, am one of the lucky ones and my husband and I are going strong. There have been challenges that haves tested us. Back breaking medical debt, sleepless nights, no time for each other and a constant sense of anxiety about your child’s future can take its toll. The best thing we ever did was hire a sitter once a week so we could just focus on each other. I’m not sure that was what made the difference for us, but it helped.

You Will Always Have A Broken Heart

When my son asked me why he couldn’t attend the University of Michigan like my niece did, I felt like I couldn’t breathe. When he asked my why he couldn’t drive, I felt sick. Every time a friend’s child gets married, has a baby, gets that great job or backpacks Europe, I feel a sense of sadness somewhere deep down that I try not to dwell on.

Don’t get me wrong. My son is a very happy person. He is working a developing his own business and has friends and social activities that he loves. However, part of me feels a sense of sadness when my friends and family celebrate milestones that we will never have. I haven’t met a special needs parent who didn’t feel the same. It is always going to be a little hard.

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Money Will Always Be A Worry

When I think about the amount of money that we have already spent for speech pathologists, occupational therapists, behaviorists, allergists, dermatologists, neurologists and opthalmologists the amount is staggering. Now that we are middle aged, not only are we worrying about our retirement but we are worried about saving for his.

What many people don’t realize is that if your only source of “income” as a disabled adult is SSI, once you move to a group home or other living situation, you can keep $50 per month for spending money. From this you need to pay for basic hygiene (soap, shampoo, toothpaste, etc.), clothes, OTC medicines, movies, transportation, restaurants, and vacations among other things. Couple that with the fact that group homes receive so little to purchase food for their residents they have to go to food pantries to make sure they have enough for everyone on to eat. So if you though the bills would ever end, they don’t. You will spend your middle age trying to save as much as you can for your adult child to provide for them now and later, as well as, have enough to retire yourself. Someday. Maybe.

Start saving now for your child even if it is just a tiny bit a week. They will really need it.

It Will Be Tremendously Difficult To Find Meaningful Activities For Your Loved One Once School Has Ended

Even with the rise of “person centered planning” the vast majority of services and activities, at least in my state of Illinois, are still group based. People with autism have restricted interests most of which will probably not be available in one of these group activities whether it’s recreational or employment based. That will leave you with a difficult decision. Do you try and fit your child into what’s available or strike out on your own.

At least in our state, the vast majority of employment-based activities involve stuffing envelopes, shredding paper and and sitting around when there is no work. Since my son enjoys neither of those activities, we were forced to strike out on our own and help him formulate his own business. This requires some seed money and there are no guarantees of success so you can see how hard it is for adults once they exit the school system.

As far as recreation goes, his interests are somewhat narrow. He enjoys biking so he joined a biking group. He still has tremendous difficulty making friends so I started a dining club for him to help him get out and about. I drive him to a Sunday school program for disabled adults which he loves that is about an hour from our house. So if you are thinking of relocating to another state to get better supports, make sure you check out the available recreational activities in the town you want to move to because smaller towns are notorious for having very little.

The author's son, Zack
The author’s son, Zack

You Will Worry Every Day About What Will Happen To Your Child After You Die

Not a day goes by that I don’t have a fleeting thought about what will happen to Zack after I am dead. Nobody will ever take as good care of him as I do, not because I’m so wonderful, but because I am his mom. As I age I can easily see how I need to get him set for a life without me. It’s scary and sad and sometimes it keeps me up at night. However, I have today and will do as much as I can.

And Yet You Will Never Stop Hoping

Hoping that they will come up with a pill that will help with language. Hoping that you will find the perfect roommates and they can live the way the people on “Three’s Company” did. Hoping that he will be embraced by your religious community so that he will have a place to call home. Hoping that your niece will volunteer to look out for him once you’re gone. Hoping, ardently, that he will have a long, happy life.

Is that asking too much?

© 2016  C.A. Porter

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