Autism For Parents

9 May 06

Let there be light – A parent’s story of an autism diagnosis

Filed under: Autism,Diagnosis — Brett @ 0359

This diagnosis story was originally posted by Brian in the two part entry Let there be light on his blog Autism: Deal With It! on 7-9 April 2006 and is reprinted here with permission.

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Yesterday at work, I was talking with a coworker who stopped me in the hall. The conversation was about recognizing Autism in an infant/toddler and the parent’s perspective. As we talked, I was asked where on the Internet someone could go for good information. Despite the fact that I have spent countless hours on the Internet reading about Autism and the Pervasive Developmental Disorder spectrum, I could not think of a simple sing source of information. Sure, there are tons of sites, but very few address what is crucial for the parent who is embarking on this journey… instead focusing on what causes Autism, how to work with Autistic children, who to become and advocate, etc.

I explained to my co-worker that the most important thing for a parent was to understand that their emotions are normal… the rest, knowledge about who to talk to and what to do, will come to light as time progresses. That being said, I decided that I should take some time and blog space to relate some of my feelings and thoughts during the period prior to and shortly after Connor’s diagnosis.

First, I need to start at birth. Although some people may think it insignificant, I didn’t at the time, nor do I now. What I am referring to is that Connor failed his initial newborn hearing test the first time, but passed it the second time. When that happened, Autism was the last thing in my mind; I was more concerned that there may have been some minor hearing issues. Of course the medical professionals told me that I should not worry, as that happened some times.

Of course at his 3 month check up, his hearing tested fine and everything seemed to be doing well. At 5 months an infant should react to loud noises, turn their head towards noises, and watch your face when you speak to them. Connor never really did any of these at 5 months. If he did, it was intermittent at best. Between 5 months and 12 months is when an infant’s “baby talk” is supposed to start developing into things like “mama” or “dada”. For us, it was well into 14 month when Connor started to use “dada” and he used it inappropriately until well on towards 30 months. (He still has gender reversal issues where he will use the incorrect pronouns.)

At about 18 months, I started to suspect that there was something going on. I began to research different developmental delays on the Internet and in book stores. At the time, Autism kept popping into my head, but I wasn’t sure if that was really the problem.

Some time around 30 months (2 ½), Connor’s vocabulary started to pick up pretty well _(about 15-20 words or roughly ½ of the normal vocabulary for a 24 month old toddler), but most of his speech was developed through echoing television shows and not through conversations with his mom or I. In hind site, this was a glaring example of echophilia, something common in Autism.

I think it was probably around the age of 3 that Connor started to do self stimulation actions; such has hand flapping and spinning. He also started to make a great number of auditor noises to accompany the hand flapping. It was these actions that truly narrowed my investigation into Autism and the related spectrum disorders. I began to suspect, with a great deal of evidence to back it up, that Connor was in fact Autistic.

Over the next 6 months, my wife and I struggled a great deal. While we really wanted to know what was going on with Connor and if he truly was Autistic, there was a great deal of emotion working against us. One of the hardest things for us to deal with was a sense of guilt. My wife and I would frequently look at each other and ask if we were making it all up. At times we both felt as though we were trying to “make” Connor Autistic. It didn’t help that Connor was an incredible adaptor (and still is to this day). He made such a great public appearance that any mention of Autism to our family and friends received odd looks.

Not knowing what to do, I approached several people at work for help (the advantages of working in a hospital!). The pediatrics department was SO helpful and provided me with the information on who to contact at the regional center. We were finally on our way to a diagnosis and an understanding of what, really, was going on.

I must say that this was VERY difficult for us… in fact, I would even say that the time we spent suspecting it, but not having a diagnosis, was more difficult than trying to learn to cope with the diagnosis once it was made.

Realizing that getting into the regional center might take a while and that without a referral or a diagnosis, we would most likely be at the bottom of the list for some time. So my wife and I decided to first go to Connor’s pediatrician to get a referral. My wife made the appointment and I took the necessary time off of work. A few days before the appointment, we sat down and discussed what we would say and how we would approach this. The first thing that we agreed on was that we would not mention to the Doctor that we had suspicions of Autism. We would, instead, present our concerns and see what the Doctor’s opinion was. So, we spent some time writing down our concerns, trying to get them on paper so that we wouldn’t miss anything.

The appointment with Connor’s pediatrician went as we expected it. After presenting our concerns, the Doctor stated that he suspected that Connor may have Autism. He further explained that he could not make an official diagnosis, but would instead refer us to the regional center, where they could get Connor properly evaluated and diagnosed. Everything was happening as we had planned. It felt good to be in some semblance of control.

A few weeks after the appointment with the pediatrician, we had an appointment set up with the intake coordinator for the regional center. My wife and I did not know what to expect from this meeting, so we were a little nervous, to say the least. Fortunately enough, the person we met with was extremely helpful. She explained that, while she could do a preliminary evaluation of Connor to see if he was likely to need their assistance, she could not provide a diagnosis (mirroring what the pediatrician had explained) as that was only available from a psychiatrist. In her initial evaluation of Connor, she commented that there were certainly signs of Autism and that we needed to move forward with an official diagnosis. She did, however, provide us with some unexpected news that put a rush on things. In particular, there were a number of services that would no longer be available to Connor if he became part of the program past his 4th birthday. Being that Connor was only 2 months shy of that date, we needed a diagnosis soon.

The intake coordinator for the regional center also explained that they would only accept a diagnosis of Autism from several sources. The first being one of their own psychiatrists. Unfortunately, the wait time for an appointment with one of the staff psychiatrists was about 3-6 months, putting us past the 4th birthday and limiting the services available to Connor. We both agreed that we didn’t want that. Our next option was to travel to Stanford and have one of their Autism Specialist evaluate Connor. The last option was to have Connor evaluated by a very well respected psychiatrist in San Jose.

After some talking, we decided that our best bet was to set up an appointment with the psychiatrist in San Jose. In hind site, this was one of the smartest decisions we could have made. The appointment was a mere 2 weeks after our meeting with the regional center, so there was little time to slow down and think about things. We, my wife and I, did talk a little about “what it…”. Questions about things like, “What if he determines that Connor isn’t Autistic?” and “What if he determines that Connor is Autistic?” were the only topics we discussed over the two week period.

Now, before I talk about the appointment with the psychiatrist, I need to explain a little about Connor. You see, he is highly intelligent and has an amazing ability to act neurotypical for short periods of time. That has been a mixed blessing, as it frequently leads to people believing that he was misdiagnosed with Autism. It is a blessing and a curse to a certain extent. But talking about that aspect is something I will save for a latter blog entry.

On to the appointment… We had been properly warned that the evaluation would take a good part of the day and that we should expect to be in San Jose for about 6 hours. This meant that Aiden needed to be watched by someone. I am thankful, to this day, to our friend who graciously watched him for us.

The evaluation itself was rather interesting and included an interview with my wife and I, discussing our concerns and our experiences with Connor. There was also some time spent watching Connor doing imaginative play on his own, with his mom and I, and with the psychiatrist. From there we went on to testing for learning delays and disabilities. Finally, after a number of different things, which all are more of a blur at this point, we were done. The psychiatrist came into the room to discuss things with us.

He started off explaining that Connor was rather unique. Specifically, he commented on Connor’s initial appearance of being normal. He went so far as to say that when he first met Connor and was talking with him, he started to form an opinion that he was not Autistic and really didn’t show signs of anything. But that opinion soon changed. As he interacted with Connor more, and observed Connor’s interactions with his mother and I, the Autism started to show. The psychiatrist explained that Connor most certainly met the criteria for Autism, but was also extremely high functioning.

Hearing the diagnosis from the psychiatrist’s mouth sent a feeling of relief through both my wife and I. We looked at each other, relieved that we were not bad parents trying to press the diagnosis of disorder onto our son. We were not bad parents at all. We had been right in our feelings. Unfortunately, after the relief subsided, we both began to gain a feeling of being overwhelmed. Until this point, it was all speculation… Nothing we could do without knowing for sure. Now that we knew, we had so much to do.

As soon as we received a copy of the diagnosis from the psychiatrist, we went straight to the regional center and get started on the paperwork for getting services for Connor. Like a small pebble sized piece of ice rolling down a snow covered hill, this process was beginning to pick up speed and mass… snowballing.

As things progressed through the regional center, we were scheduled to take a mandatory course on ABA offered by them. We were excited about this. We figured that there would be other parents at the course who we could talk with about this… who were in the same situation. Unfortunately, we were somewhat saddened to find that the parents in attendance had very different situations. In fact we were the only parents there dealing with Autism. This started our feelings of being on our own in this adventure. It was tough for a number of weeks. Not only did we feel alone, but we also struggled to understand what exactly it really meant to have Autism. There were so many myths about Autism that we needed to be able to dismiss.

I remember coming home to my wife one evening and seeing her in tears. She was thinking about all the depictions of an Autistic person as being devoid of sympathy and emotion… it hurt her deeply to think that she would never be able to have those great emotions from Connor. I knew that it was not true… but helping her to understand that was tough. I began to really feel the same feelings of being alone in this battle that we had in the ABA class. Adding even more to the isolation was the increasing number of people that didn’t believe that Connor was Autistic. It came to a point that my wife and I, only half jokingly, stated that we would simply carry around a copy of Connor’s diagnosis for everyone to read.

Let me tell you, there is little worse than feeling alone in such a struggle. That feeling being compounded by the distrust of family and friends was truly a low for us.

Over time, we were able to educate our family and friends and they began to accept it, or at least they stopped challenging us on it.

As I look back at the time between when we started to suspect Connor had Autism and where we are today, I see so many places where I would have loved to have been able to read someone’s story about their trials… Just knowing that others went through the same self doubt, the same odd feeling of happiness that there was a diagnosis, and the feeling of being alone would have helped.

That is one of the reasons I started this blog. I hated the feeling of being alone and it is my hope that even if it is but one parent out there who is going through what we went through that, in reading this, knows that they are not crazy for having feelings of self doubt and feelings of happiness. And, most importantly, I can help them in knowing that they are not alone in this.

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25 Comments »

  1. So glad to have read this. We’re working right now with the Regional Center and our local Community Therapies for our son, 2 1/2. Most people believe he just beats to his own drummer, but after the birth of our second child, 6 months ago, not only has he stopped talking with the few words he had mastered, but also, is developing some other strange habits. He has always been extremely focused on his own projects, being able to ignore people from the age of 3 months. My husband and I are feeling extreme stress, ups and downs with the whole process. Having the fact that the regional center’s diagnosis will only take 1 hour. I’m thinking, how can they diagnos a child in one hour? What if he’s tired? His behavior is not routine. Then to get a label of autism, and what if he’s not? So, my question is, do we hire a psychologist outside to do a thorough diagnosis or leave it up to the regional center? And like you mentioned in your article, a diagnosis outside won’t hold up unless it’s one of their recommended psychiatrists. It’s 4-5 months away before they plan on doing this, so he can get the help he needs after he turns 3. We’re still in limbo and the last thing we want is for our son to lose what he’s gained, but it’s definetly baby steps for each accomplishment. My heart goes out to everyone that deals with this and after reading your article, we’re glad to know other couples like us are out there.

    Comment by Rhonda — 17 May 06 @ 0453 | Reply

  2. Rhonda,

    I truly understand your feelings and the desire to get the RIGHT diagnosis. I too would be sceptical of a 1 hour appointment. In truth, all of the observation and testing should take no less than 2 hours and really should last longer than that. I have heard many horror stories of parents who have had their child diagnossed as Autistic by an outside professional when the staff psychiatrist felt that the child only had enough criteria to be considered PDD-NOS.

    In our case, we had a time constraint that made the decission that much easier. I can’t say that the original decission would have been the same if time was not an issue. That being said, knowing what I now know, I am glad that the time constraint forced us to an outside professional. My wife and I have already determined that when we are financially ready, we will have my other son go see the outside professional as well. I have a great deal of faith in his diagnostic abilities.

    If I were in the same situation as you are, I would start by find out who the regional center will accept diagnosis from. You may find that there are no options or that there are many great options. The next thing I would do is talk to as many people in your area who have a special needs child. Try to get a feel for which psychitrists are on top of things and which are really behind the curve. Lastly, go to the evaluation by the regional center. Listen to what the psychitrist has to say, ask a lot of questions, besure you describe to them in detail any symptoms that you see at home which may not be presenting themself in the evaluation, and make sure you walk away with a complete understanding of why they made the diagnosis they did. After the diagnosis, look through the findings. Decide for your self if the psychiatrist took into account all of the behaviors/symptoms you described and they observed. If you have issue with it, then move on to an outside professional for a second opinion. I beleive that most regional centers would be more than willing to accept the second opinion if they are from a source they usually accept. If they give you grief, demand that they provide you with another psychiatrist to give a third opinion on this. Chances are that they will not go that far and will accept the outside diagnosis.

    I hope this is helpfull to you!

    -Brian

    Comment by Brian The Autistic Jedi — 5 Jun 06 @ 1939 | Reply

  3. I was just looking for some support. Our son Jacob was diagnosed pdd-nos this last summer. He will be three in November. I am so confused about exactly what we should be doing or feeling. Are we doing too much, not enough I just don’t know. He has started a preschool wiht our local ISD and loves it much to my surprise. Now it seems he doesn’t want to be home he wants to be at school. We have four kids total so I think the organized routine at school is soothing for him. I try to be organized but continually feel as though I am failing at helping Jacob and neglecting my other kids, I don’t want them to resent Jacob. I am feeling so overwhelmed right now. I don’t know any other parents in our situation. I am comforted to hear we are not alone. Thank you for your story.

    Comment by Mary — 22 Sep 06 @ 0103 | Reply

  4. I learned a lot from your story, and me and my husband has been going through similar. My son Kenneth is now eight years old and has been fighting bad tantrums as well as seizures, he is also Autistic and highly intelligent. I have information that is very helpful and is now writing special books for special parents. You can email me or call me at Carmella_Shumate@earthlink.net or call me at (708)841-5249. Thanks for your wonderful story about your son with Autism.

    Comment by Carmella Shumate — 2 Feb 07 @ 1048 | Reply

  5. reading your story is like looking in the mirror at our family. My son’s name is also connor. He is now 22 months and we have suspected he may have autism as well. He has gone to the pediatritian and we are currently waiting for his testing with the psychiatrist on october 18th. To look at him you wouldnt think he would have autism. He does have symptoms such as no speach unless repeated. Then he may never use that word again. Connor walks on his tip toes,squints his eyes and is obsessed with spinning wheels on cars,strollers anything that spins. Our Family is not very supportive and at times i think they think i want him to have autism. I dont, but when you have numerous doctors suspecting he may have it. You become stressed and worried. I think the hardest part is the wait. We have been waiting for 4 months. It could be worse other wait lists are 2 years long. After reading your story i dont feel as alone. Thank you for sharing. Michelle

    Comment by michelle — 22 Sep 07 @ 0233 | Reply

  6. The very hardest thing about my very similar experience of diagnosis was that our initial diagnosis was not autism. He managed to get diagnosed as something like “coorination developmental disorder” “speech delay” “oppositional defiant disorder” (yes, he was doing this on PURPOSE according to these morons) and a few other acronyms. But I knew better. The next doctor that I took him to said PDD-NOS, and finally a psych looked at him and said “I’m not seeing anything here that I have trouble calling autism – this boy is extremely bright and very high functioning, but there is no doubt that he’s autistic.” It really depends on the day with my son. But that initial diagnosis literally suggested that my husband and I go into therapy, and that our child was just a bad kid.

    I still have this problem sometimes. He can carry himself off so very well. People often say “wow, but he looks so normal. I never would have thought that.” Stay with him for a few hours. Wait. His teacher this year, at a new school said also that he didn’t stand out at all (a minor miracle, hard-won through so many therapies – last year he was kicked out of his class about once a week and I had to leave work to go and get him). Now, a few months in, she says that she gets it and understands the truly complex picture that he is.

    I love him – to me he’s perfect. But he’s never going to be like all the other kids. Interestingly, abnormal development is still development – and you have to keep up with so many changes, just not when you expected them. As a child gets older, the tolerance for things outside the norm in society drops so precipitously. I am not sure what the future will hold for us, or how much patience the world will have for my son as he grows. All of my worst moments are afforded me by the outside world’s reaction to how we get through the day. But between him and me, we are happy and at peace.

    The clues that you saw in Connor were problems I had with my older son, whose diagnosis is (incorrectly) ADD. Really, he has a whole lot of aspergers traits. Nobody really believes me on that. He just completely lacks ability to read social cues, cannot get subtext, must be explicitly told everything, talks constantly in a non-communicative way, is severely low-tone, and – yes – can’t focus. When he was 6 months old we had his hearing evaluated, because he never turned when his name was called, and never jumped at loud noises. He simply seemed not to hear most of what went on around him. But if the TV came on – it was like the rest of the world disappeared. Now I know.

    I know that sinking feeling you describe so well. I know the wait for a diagnosis, the sick feeling that you have made so much progress, and have so much farther to go. The feeling that your beautiful, sweet child will never be seen for the wonderful person he is because of some arbitrary criteria and a lot of prejudice.

    Thanks for sharing.

    Comment by Elle — 21 Jan 08 @ 0116 | Reply

  7. Thank you for sharing this with me, I feel like you went through EXACTLY what I am going through. The only difference is I am a single mother and I hope I am not going crazy~

    Comment by meg — 16 Oct 08 @ 2032 | Reply

  8. I just found this blog. Thanks so much for posting your thoughts. My son was just evaluated by the Regional Center’s Behavioral Psychologist and Speech Therapist. They did not come out and say that it was Autsim, but they did recommend agressive ABA therapy. I have no idea what to think, whether to get a second opinion or not, or just see where this new form of therapy takes us (he previoiusly received physical therapy for not crawling or walking on time and currently sees a cognitive therapist).

    Some people in my family think that he’s just fine, including my husband. I feel so alone.

    Comment by Casey — 27 Feb 09 @ 0421 | Reply

  9. I love your site!

    _____________________
    Experiencing a slow PC recently? Fix it now!

    Comment by Michael Tim — 28 Feb 09 @ 1730 | Reply

  10. I noticed that this is not the first time at all that you write about the topic. Why have you decided to touch it again?

    Comment by Random T. — 22 Apr 09 @ 0702 | Reply

  11. I found out tonight with a 40 page report, it’s Autism, after kaiser saying no, I am in shock, I feel like a part of me has died. Where to go from here, I”m so scared.
    Please write with support,
    do I get second oppinnion, find autism class so he can start that next year ?
    what do u , or did you do. Will he be normal enough to have a job one day, he’s 6,
    he talks but needs extensive speech,,,,
    I”m in shock this evening,
    Cheryl
    Ventura County
    CheriHartShow@aol.com

    Comment by cheryl — 23 Apr 09 @ 0758 | Reply

  12. I made it only a quarter of the way through your story so far, but relief came when I read that your child is an incredible adapter and how you and your wife thought you might be crazy and trying to make your son autistic.
    I have known since my son was about a month old that he has autism, and it took another almost 2 years to finally get the diagnosis. However, even now, a year after being diagnosed, I still wonder if I’m crazy at times, since my son is verbal, but mostly echoes, and is highly adaptable to situations. If he isn’t feeling safe, he holds it all in until we get in the car or somewhere he knows he can unleash. I too, have struggled with friends and some family, thinking I’m over board because my son can often put on a good show. No one realizes how difficult this can be, especially since my boy has a wonderful twin brother who has helped him adapt as much as possible.

    I’m exhaling a sigh of relief.

    Comment by Jasmine — 2 Jul 10 @ 1429 | Reply

  13. What is the cheapest route to go for a second opinion from an “insurance-recognized” diagnostician? We broke the bank on $2800 for an initial diagnosis with a pschotherapist, but I DON’T believe her findings–and it was too long ago. The insurance companies believe that Rx, but I want a new one. Isn’t there a less expensive route to go for the second opinion?

    Comment by Michael — 30 Sep 10 @ 1502 | Reply

  14. “You see, he is highly intelligent and has an amazing ability to act neurotypical for short periods of time. That has been a mixed blessing, as it frequently leads to people believing that he was misdiagnosed with Autism. It is a blessing and a curse to a certain extent. But talking about that aspect is something I will save for a latter blog entry.”
    You can out more?

    Comment by ivsibet — 20 Dec 10 @ 0707 | Reply

  15. i know this blog seems ancient but i wanted to share my likeness as well. my daughter was said to have autism by the school psychologist. well, that was a hard pill to swallow. we were directed to our local regional center. that was 3 months ago and i’ve still heard nothing back, which is frustrating to say the least. so we went elsewhere. took her to a child psychiatrist who tells us today, after 5 one hour sessions that she has severe adhd. i don’t agree with it at all but insurance won’t cover a second opinion for developmental delay issues. what to do? i know in my gut she has autism, at least asperger’s. but now i sit here questioning myself. i have been dealing with this since she was 2 1/2. she will be 8 in two months! AAAARRRGGGGHHHH!!!!!
    so i am calling the regional center again tomorrow and every day until this gets resolved. it’s not that i want the answer i want to hear, but my gut is telling me that this dr was wrong. adhd does not describe nearly HALF of her behaviors…

    Comment by nita barnes — 7 Jun 11 @ 1941 | Reply

  16. I love the fact that the parent stressed dealing with the situation instead of wondering about causes. There are too many who get caugt up in the blame game (blame vaccines, blame the environment, blame themselves, etc.) and none of that matters. Once a diagnosis has been made, the important thing is to focus on that little one-how can you make their life better; what can be done to give them the necessary skills to achieve the best they are capable of? And honestly, focus on survival as a parent from one day to the next.

    Comment by signsofautismintoddlers — 1 Oct 11 @ 0918 | Reply

  17. hi thanks for your blog i really identified with what you said my son sounds very similar and the feelings you felt we are going through my son thomas is six and has been diagnosed ASD a month ago it is very difficult to come to terms yourself even though we knew. and to keep justifying the diagnoses with people Im finding difficult after reading your blog i feel like me and my husband are not on are own and can relate to someone thankyou this has helped me a lot

    Comment by Helen — 1 Oct 11 @ 1821 | Reply

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  23. Thank you por your sharing. My son was diagnosed with autism 2 days ago and I am not sure how to support my wife. She was the one suggesting the test as she works with kids with special needs. I didn’t tell her but I thight she was exaggerating. How can my son have autism? As we didn’t have any history in the family- we were young. My thoughts were wrong. I feel helpless as I want to believe he doesn’t have anything- his test last only 1.5hrs and we were told to be ready for 5hrs test. I ask the person how can she diagnosed my son in that short of time and she simply said I do this for living and I know when a kid has autism. My experience can validated the diagnosis. I was in shock! I asked her what are the reasons, what she saw in my son. She simply said she has flopping his hands no eye contact and didn’t respond to his name. Again I asked that’s it- she said that’s enough and you should not worry about the diagnosis you should worry about if he’s hight or low function. I honestly one to hear a second opinion but my wife insist that she sees something in our some and she believes that he has autism. What should I do?

    Comment by Jorge Alvarez — 18 Sep 15 @ 1446 | Reply

  24. Thank you so much for sharing your story! I am going through a simular situation with my son, and my entire family is in denial. He is 2 and a half, so we’ve been told he’s still too young to diagnose, but the more I read, the more I’m sure he is on the spectrum.

    Comment by Mel — 23 Nov 16 @ 1933 | Reply


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