Dos and Don'ts After an Autism Diagnosis

My kids (left to right): Tate, Titus, Emily, Isaac, Sydney (above), Regan, Levi, Bailey

Over ten years ago, my son Tate was diagnosed with autism and my life was forever changed. I am regularly asked for advice from parents of children newly diagnosed with autism. The diagnosis can be intimidating and parents are sometimes unsure of where to turn or what to do. I don’t have all the answers. But I do remember the panic, fears, denial, and the distress I felt when my own son was diagnosed. I know now so many things I did not know then. I can honestly say that the life we are living is not scary at all. And so I tried to put into words some of the things that I thought might help a parent of a child newly diagnosed with autism.  

Don’t let the autism diagnosis intimidate you. Do give yourself some time. Do some reading. Ask some questions. Do not jump to conclusions. Do not let all the doctors, therapists, educators, or the price tag that comes with autism intimidate you. One day you will look back on this and wish you could reassure yourself because you’ve got this.

Don’t let the autism diagnosis cause you to feel sorry for yourself. Do count your blessings. In reality there are things so much worse than an autism diagnosis. Look around you. There are people dealing with truly tragic situations. Now, roll up your sleeves. Your role as your child’s advocate is going to keep you busy. Things are going to be okay.

Tate at Preschool

Don’t let the autism diagnosis cause you to forget. Do remember that sweet baby you fell in love with! He/she is still that child! Don’t become so caught up in the present or so fearful of the future that you forget what’s important. Don’t forget that you are your child’s parent first and his teacher/therapist second.    

Don’t let the autism diagnosis leave you feeling self-conscious or paranoid. Do understand there is no guilt to be had or blame to be placed. There is nothing you could have done differently to prevent your child’s autism. I will not lie. If your child melts down, or engages in stereotypic behaviors in public, there will be stares. There will possibly be rude questions and awkward silences. There will probably be people who think your child needs discipline when, in fact, discipline would be pointless. Don’t let people who are uneducated about autism cause you to feel humiliated. Know this: It does get easier with time.

Don’t let the autism diagnosis isolate you. Do reach out for help. It is true that some people unfamiliar with autism might stop coming around after the diagnosis. They do not understand the behaviors, the meltdowns, the necessity for routine, and the jargon we speak. If you find yourself in need of understanding, find a parent who has already walked a few miles in your shoes. Online groups can be helpful. There are most-likely support groups and other parents in your situation within driving distance. Look to public schools and recreational activities in your area, as well as religious programs. There is a lot of camaraderie in the autism community. Reach out. We help each other. 

Tate's poor motor skills and refusal of foods
often meant someone needed to help him.
Older siblings were always willing to help.

Don’t let the autism diagnosis rob your other children. Do explain autism to your children and what it means to your family. A child with autism will likely need more care than his siblings. Reassure your other children often and show them how important they are to you. When possible try to include all your children in the therapies and activities your child with autism needs. There may be many things your other children want or need that your child with autism cannot participate in. Sometimes your other children will have to have your undivided attention too. Your world cannot ALWAYS revolve around the child with autism.

Don’t let the autism diagnosis steal your joy. Do maintain a sense of humor. You have a choice. You can dwell on all the what-ifs and the should-have-beens and become bitter or you can accept what is and look for the joyous moments around you. Having a child with autism will not suck all the fun out of life. A sense of humor can help you tremendously. The fact is, autism or not, kids are fun and kids say and do really funny things. Enjoy those things. Don’t let autism silence the laughter in your home.

Don’t let the autism diagnosis squash your hope. Do be willing to dream a little differently. Before the autism diagnosis you were possibly envisioning driver’s education, college, a wedding, and grandchildren. Don’t stop dreaming dreams for your child. Those things still might happen. If, as your child ages, it becomes clear some of those things will not be happening, then modify your expectations. But stay motivated to help your child become the best that he can be.

Don’t let the autism diagnosis cause you to doubt your faith. Do take advantage of the things autism can teach you. God does not “zap” families with autism because they’ve been “bad.” Many parents of children with autism report they have become much more patient and understanding people since their child’s autism diagnosis.

Don’t let the autism diagnosis pull you into frivolous debates. Do use your time and energy wisely. You have got important things to be doing. Focus your attention, time and energy on your children and their needs. Don’t get caught up in the autism community debates that lead to nowhere. Whether or not you choose to use the word “autistic” or the phrase “person with autism” is no one’s business but your own. Your right to disclose your child’s diagnosis to everyone in your community or keep it in house is also your own. These kinds of disputes are not helpful and only cause division in the autism community. Don’t get involved. Your time is much too valuable.

I can imagine what you are feeling. I have been there. Autism is like a thief in many ways. It has been known to rob children of their childhoods. It can sometimes steal the joy and hope from parents. Autism has drained a lot of bank accounts and has ruined marriages. But it does not have to be that way. Don’t let an autism diagnosis do those things to you.

If you liked this post you might also one of these: It's Not Such a Bad Life or: 15 Truths of Parenting Special Kids or: There is No One to Blame.

Walk Away

I have a fourteen-year-old son with autism and I am very active in the online autism community. The question has been asked of me more than once lately: If you meet a small child who is showing signs of autism, should you tell the parents of the child that you suspect he might have autism? There are a couple of things to consider for sure. How well do you know these people? And how sure are you that your input will be welcome? Unless the parents are folks you know very well and they have asked for your input, you might want to consider biting your tongue and walking away. And honestly, even if you know the parents extremely well you should consider just walking away with lips tightly sealed. Does my answer surprise you?

It is not the answer I would have given ten years ago when I first entered the autism community. Back then I wanted to share my newfound knowledge with as many people as possible. It is the answer I give now though because of the experiences I have had. I have lived and learned. Yes, I am aware that early intervention is the key. Yes, I am aware that many people do not even know what the signs of autism are. Yes, I am aware that a young parent of a first child might have nothing to compare their child’s development to and need some guidance. But I am also aware of a few other things. The shock and disbelief you will probably encounter from a parent when you suggest something may be “wrong” with their child will build a wall between you and them that cannot be knocked down easily. That wall could keep them from coming to you later for advice when they are ready to seek help. Offering unsolicited advice or even a suggestion about seeking a diagnosis might do irreparable damage to the relationship you once had.

If you find yourself wanting to offer unsolicited advice to parents you do not know very well think about this: You probably do not have enough information to make any credible suggestions. Perhaps they already have a diagnosis or a similar diagnosis. Perhaps they do not want one. Perhaps it is none of your business. I did not think about these things when my son was newly diagnosed and I found myself wanting to enlighten those around me. I found very quickly that most people want to keep their feet firmly planted in denial as long as possible. There is something to be said about the bliss of ignorance. I myself often long for the days before I knew what autism is. I was one of those parents who would not have appreciated someone else trying to tell me about autism before I was sure I needed to seek a diagnosis. For a while I forgot that about myself, or maybe I just did not consider how others might feel similarly.

Put yourself in the shoes of the other parent (or maybe you have actually been there already). Have you ever had anyone walk up to you and suggest they know something about your child that you yourself do not know? A parent can go from friendly to defensive, or even furious, in a heartbeat. Would you walk up to a parent at their kid’s ballgame and suggest their kid needs to spend some additional time practicing at the batting cages? It probably would not be met with a friendly attitude. Would you offer parenting advice to parents in the grocery store because their child is misbehaving? I would not recommend it. Would you ask the parent of a child who is limping or stuttering what kind of therapies and doctors they had been to about their child’s “disability?” I can imagine the parent would not appreciate it.

I would make a few exceptions to my rule for not interfering. If the child in question were a relative I would mostly likely offer the parents some literature to read and try to have a conversation with them about early intervention or the signs of autism. If they were not receptive then I would not push. Probably nothing good would come of it. Of course most of my relatives are very educated about autism already because they are a part of Tate's life. 

It is hard. It is hard to see the signs of autism in a child, know what needs to be done to help, that early intervention is the key and time is ticking, and know you have so much knowledge you could impart, and still walk away. It is harder for some of us than others. When you are introduced to autism, you begin to see it all around you: the awkward gait, the lack of eye contact, scripting, inappropriate play, repetitive behaviors and social delays. I have to remind myself often, although I know what autism looks like, I am just a mom of a child with autism. I am not a doctor. I am not qualified to diagnose autism. I also have not been invited to give my two cents. And I walk away.

Tate and Sydney, age 3 and 1

If you do find yourself a part of a child’s life after the diagnosis of autism, a child you suspected had autism before the parents sought a diagnosis, NEVER NEVER NEVER say to the parent, “I suspected that your child had autism.” This actually happened to me and has happened to others I have spoken with. There is the initial hurt of knowing others “knew” but did not tell you. For me, even after I came to realize I would not have been receptive had that friend come to me earlier than I was ready to hear the word “autism,” the hurt was still there. It was sort of “’I told you so’ only I didn’t tell you” and it was so humiliating and painful for me. If you find yourself a part of a child’s life after the diagnosis of autism, a child you suspected had autism before the parents sought a diagnosis, and you are tempted to say, “I knew something was wrong earlier than you did.” then think again. If you bit your tongue in the first place and never said anything then BITE YOUR TONGUE this time too.    

Note: I’m sure I will be hearing from people who tell me they disagree and they were very grateful for advice they received. How without the unsolicited advice of a neighbor, friend, relative, or stranger, they would never have gotten their child the help they needed. I realize I am not the authority on this subject and I realize there are people who do not become offended when someone offers them information about autism. However, I still believe that MOST people would rather not receive unsought contributions from others about their children’s well being. This is just my humble opinion. As hard as it is I try to bite my tongue and walk away.

The Memory That Does Not Fade

I remember the day my precious little boy was diagnosed with autism. Portions of that day have faded but much of it runs in a loop I can play in my mind over and over. I remember the phone call I placed that morning, in a panic, asking if I could get “right in” to see the pediatrician I trusted. I remember the receptionist asking me what symptoms my child was having and I remember telling her my suspicions. I remember the difficulty I had putting those words together and speaking them out loud. I remember her telling me that I could bring him in almost immediately. I remember picking my little boy up and putting him in his car seat, handing him his cloth diaper to hold; and I remember driving the thirty minutes to our appointment time. I prayed the whole way that I was wrong; that what I had found on the Internet during the night was not what Tate would be diagnosed with.

Autism: it had been in the back of my mind for months but I had not seriously considered it. I had not said the word autism and meant it before that; but after putting Tate to bed the evening before, and lying next to him, I had been forced to face the reality that something was wrong. Something was not just “a little off” but something was REALLY terribly wrong. I remember lying next to Tate. He was whispering to someone or something that only he could see. His words were not really words anymore but gibberish. He seemed to know what he was saying but no one else did and it did not matter to him. What had happened to all the language he used to have? Why didn’t he talk to me anymore? What language was he speaking and whom was he speaking to? Where had my little boy gone? I remember getting up out of the bed. I remember that Shawn was snoring. I remember going into the study and googling “mental illness in children.”. After hearing the strange language and the whispering he seemed to be doing to invisible beings, I was sure my little boy must have a mental illness. I remember the hard-backed chair I was sitting in at the desk. I remember typing in the symptoms I had been noting and the things I had been questioning in the weeks leading up to that night. I remember when the word “autism” came upon the screen. I remember taking a test and scoring Tate, afraid to read the results. I remember the first time I ever saw “PDD-NOS” and learned that there were different kinds of autism. I remember running to the bathroom to be sick, tears running down my face. I remember waking Shawn and asking him to come and read the things I had found. I remember Shawn reading, looking at the test I had found and calmly telling me he thought I had just accurately diagnosed Tate. I remember Shawn eventually going back to bed and I remember sitting at the computer the rest of the night shivering, reading, and crying, wondering and worrying.

Our appointment with the pediatrician was set for 11:00. I remember. I had called at 9:00 and the sympathetic girl on the other end of the line had told me to be there at 11:00. I don’t know what I would have done if they had put me off for a day or two. I remember thinking that over and over, “Thank goodness they let me come right away.” I remember sitting in the waiting room. There is a waiting area for well patients and a separate waiting area for the patients who are sick. We waited on the well side and I wished we were only there for an ear infection or a cough. Normally, I hated sitting on the “sick side” amongst the germs. I would have given anything to switch sides that day. I remember the nurse who called us back and I remember sitting in the patient room. I remember which room, in the maze of rooms in that practice, we used that day. Tate sat on the carpeted floor. There were some neat trucks in the room that my other children had often played with. Tate ignored them. His cloth diaper was much more interesting to him. I had brought Tate’s three favorite things with us. I wanted the doctor to see them. He had a cloth diaper, a small set of beads on a blue wire that twisted and turned, and a hardback novel about two inches thick. I cannot remember the name of the book but I believe it had a green cloth cover. Tate could not read it of course, but he loved that book. He would sit with it on his lap and fan the pages of that book for 20 to 30 minutes at a time.

I remember the doctor coming into the room. The door of the room was one that slid on rails instead of opening on hinges. Dr. Loveland, he always called himself “Dr. Chuck” when he spoke to the kids, asked me why I had come. I said, “I think there is something wrong with my baby” and I began to cry. Dr. Loveland handed me a tissue and stood next to me and watched Tate “play.” We watched as Tate tossed his cloth diaper into the air over and over, watching it drop. Tate did not look up and acknowledge the doctor or notice that I was crying. He just tossed that diaper up in the air and watched it fall. I told the doctor that it was Tate’s favorite activity. Dr. Loveland asked, “What do you think?” and I said, “I think he has autism.” Dr. Loveland’s exact words were, “I suspect you are right.” I remember them clearly. He stood and watched Tate and waited quietly until I could talk and then he asked me what kinds of questions I had for him. I remember asking, “What do I do?” and him promising me he would make sure I got all the right phone numbers and contact information for people who could help me. I remember him telling me that I would need to take Tate to a developmental pediatrician for an official diagnosis. I remember asking him what our future would be like and what would happen when Tate was grown. I do not remember his exact words but I do remember that Dr. Loveland did not lie to me. He was very compassionate when he told me that the future would be somewhat limited for Tate. He told me that he had many teenaged and young adult patients with autism and oftentimes parents had to hire help when they were older and their children became adults.

I remember leaving that appointment with a very heavy heart. But I also remember the phone ringing soon after I got home and Dr. Loveland’s nurse making recommendations and giving me phone numbers to call for information and services. I did not feel alone or abandoned. I was not ever treated with anything except compassion and kindness. So many parents with children diagnosed with autism have horrible stories to tell about the way they were told their children have autism or how the doctor treated them. I have nothing but nice things to say about the pediatrician and the people he referred me to.

It is possible that more and more of that day all those years ago will fade from my memory as more time passes. But, I somehow doubt that I will ever forget the compassionate doctor who helped me take my first step into the world of autism. I am so glad it was Dr. Loveland standing beside me that day. Dr. Loveland passed away recently and he will be missed. He was a great man and I am thankful he was in our life. 

Find me on Facebook at Quirks and Chaos. Like what you read? Want to become a follower? Click on the Google Friend Following gadget on this blog. It's over on the right side and asks you to subscribe. Or you can add the URL (the web address in your search bar) to your Reading List. You can do that by clicking the plus sign in front of the URL. Thanks! 

This is a post called: What is Autism or Why Does Tate Act That Way? This is another post about our experience with a great practice of pediatricians: Why I Still Get the Recommended Immunizations

The Photo On My Living Room Wall

There is a photo of my kids on my living room wall that was taken before Tate was diagnosed with autism. Sometimes when I look at that photo I wish I could step back in time and be with those kids again, not knowing what I know now. They are the same kids I have today, of course. I am still their mother. They are still my kids. They still love me. But it was a different life we lived. It was life before autism. Tate had autism the day the photo was taken. I am convinced he had autism the day he was born. So, what is the difference? The difference is that I was oblivious. I was ignorant of all the hard work that would have to be done, unaware that my hopes and dreams for Tate’s future, my future, were about to be snatched from me. They say, “Ignorance is bliss.” When I look at that photo I can believe it. I remember fondly the days that I did not know what autism was and what lay ahead. My ignorance was bliss. 

The reality is that I had to learn about autism to be able to help Tate. In fact, if I really could turn back the calendar, taking the knowledge that I have now with me, the wise choice would be to go back to the day he was born, long before that photo was ever taken. I would want to know that same day that he had autism. The earlier the intervention and education begins, the better, and I could have begun that very day to educate myself and begin the early intervention Tate needed. So I suppose, although ignorance is sometimes bliss, it is not usually for the best. I would even argue that education is power, knowledge leads to opportunities, and awareness prevents many problems. And that is why I started my blog. I wanted to raise awareness and educate others about autism. If I can end another mother’s “bliss” soon enough then the early intervention can begin and their child will get help sooner, not later. I hate to do it in some ways. I know the pain of the realization that your child will struggle in this world. He may not mature and go away to college. He may not be able to live on his own or marry. His interests may never develop beyond video games or toy trains. But I also know the relief the diagnosis brings. Now the developmental delay has a name and now there are therapies you can do that will help. There are experts you can call and books you can read. Now you roll up your sleeves and fight and work as hard as you can to help your child meet those milestones he has been missing.

Having said all that, my heart still argues with my head on occasion and I sometimes long for the “bliss” that was my life in that photo on my living room wall. I want to be ignorant, just for a little while again.

Want to read about the day I realized Tate had autism? Here it is: The Memory That Does Not Fade

Like what you read? Want to become a follower? Click on the Google Friend Following gadget on this blog. It's over on the right side and asks you to subscribe. Or you can add the URL (the web address in your search bar) to your Reading List. You can do that by clicking the plus sign in front of the URL. Thanks! You can also find us on Facebook. Look for Quirks and Chaos.

What brought you here?

This past month we visited a pediatric psychologist at Children’s Mercy to get a diagnosis for Tate that will be accurate under the new guidelines that are being used in the world of autism. In recent years, the American Psychological Association (APA) used a tool called the DSM-IV-TR to diagnose Autism Spectrum Disorders (ASDs). ASDs included Autism, Asperger’s Syndrome and pervasive development disorder-not otherwise specified (PDD-NOS). In May 2013 the DSM-5 was introduced as the new diagnostic tool. This manual has eliminated the three subgroups. Tate’s doctors have told us that the word Asperger’s will soon be obsolete. It is my understanding that the new diagnosis for a child with autism will be Level 1, 2, or 3, with 1 being the highest functioning and 3 being the lowest.  Tate’s new diagnosis is Autism Level 2.  For more information about the new terminology and the new criteria I found this article helpful: http://www.autismspeaks.org/what-autism/diagnosis/dsm-5-diagnostic-criteria

Some think the motive behind the new criteria is to make it harder to get an autism diagnosis, thus bringing the alarming numbers down. I do not really have an opinion on the reasoning behind the change. I do hope that the new criteria will not harm the autism community and prevent children who need support from gaining it. 

In order to get the evaluation and the new diagnosis, the psychologist had to spend several hours with Tate. He gave her a pretty accurate picture of himself from the introduction. He asked, “Do you know what brought us here?” The psychologist assumed he was asking her to reveal the purpose of our visit and she said, “What do you think brought you here?”  He answered, “a truck.”  It got better (or worse depending on how you look at it).  While testing with Tate, she needed him to define words. When asked to explain what a car is for, Tate said, "A car is something you drive around in because humans are loosing the ability to walk." She asked him about posture and he started speaking gibberish. She asked him what he was doing and he said he was speaking Spanish, also called posture. When asked what an American is, Tate said, “When you are from America, you laugh a lot and smile and play in the sunshine. You also speak English or Spanish." So, he got that right! Ha. The doctor showed Tate a lot of faces that illustrated a lot of emotions. Tate failed to identify almost all of them correctly. The doctor asked him what a smile and a frown had in common and he said, “Both faces are round.” There were many, many more gaffes and blunders over the two days of testing. Some made us laugh and some made me want to cry.

Age 3

After all the testing, Shawn and I met with the doctor alone. The results and the recommendations from the doctor were both helpful and discouraging.  Going into Tate’s appointment for his diagnosis at age 3, and again at age 12, we had our eyes wide open. We already knew both times that he had autism and we had a long, hard road ahead of us. The difference between the first time when we heard the diagnosis “PDD-NOS” and the second time when we heard “Autism Level 2”, was that we had a lot of hope at age 3 that we no longer have nine years later. Originally, we fell hook, line, and sinker, for the idea that kids can “recover” from autism. We spent the thousands of dollars it took to get best-practice, early intervention. We spent the hours and hours it took to get Tate kindergarten-ready academically. We even made progress with a lot of social skills. We worked so hard and saw a lot of growth but we didn’t get the “recovery” that we had hoped for. I am still one hundred percent for early intervention and believe Tate is much less handicapped than he would have been without the hard work. Perhaps if we had not hoped for recovery we would not have worked so hard then. Perhaps if we had not hoped for recovery the reality would not hurt so badly now. I have learned not to dwell on “what ifs.”   

Regardless of what we call Tate’s disability, it is still the same disability and he is still the same kid. Tate still struggles in all the same areas. Tate still needs the same supports he did before the new diagnosis. We continue to make progress and I see it come in leaps and bounds sometimes. 

Age 12

Over the Christmas break, Tate’s oldest sibling, Titus, was home for a visit. He is sometimes able to explain things to Tate that I have been unable to. I told Titus we were working on teaching Tate about sarcasm. I know what you are thinking… Why would a Mom want to teach her child the art of sarcasm? Why would any mother in her right mind go out of her way to try and help her kid become sarcastic? Well, in the first place it is age appropriate. In the second place it is much like figurative language and joking that is over Tate’s head, causing him to miss out on so much of the conversation around him. Thirdly, we are constantly trying to make Tate see that not EVERYTHING has a concrete, literal meaning. Sarcasm almost always means exactly the opposite of the words that are actually used. So, Titus gave it a shot. He gave Tate a definition of sarcasm and some examples. Then we asked Tate to try. Tate looked confused. I said, “Tate, look at Sydney’s hair. It is a mess. What could you say about Sydney’s hair that would be sarcastic?” Tate responded, “Sydney, your hair is sarcastic.” Lesson fail!! I’ve been hammering away at it ever since though and pointing out sarcasm whenever we use it or hear it. Sunday, we sang a really short hymn in worship and Tate leaned over and whispered, “THAT was a long song.” Then he looked at me and smiled. Now, normally would I praise one of my children for saying something sarcastic about a worship song? Would I ordinarily get excited about whispering and joking during worship? NO! I would not. BUT… I almost came out of my seat I was so ecstatic. I pulled Tate over to me and excitedly whispered, “Tate! That was sarcasm! You did it! You said something sarcastic! Good job!” I know that eventually I will probably regret these lessons in sarcasm. I know this because four of my seven children are now sarcastic, young adults who did not need my tutorials to become that way. I had a shot at mothering a child without ever having to hear those sarcastic comments that come so easily to the others, but I am a glutton for punishment because just today I said something sarcastic to Tate and then said, “Did you hear that Tate? That was sarcasm” and he smiled. 

This is another post you might enjoy about language: Who's on First?

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