Hearing the diagnosis

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Hi everyone,

I will hopefully be graduating as a psychologist in the near future, and having little experience working with parents of children with an ASD, I am hoping that some of you would be kind enough to tell me about your experiences in hearing from psychologist/pediatrician that your child had an ASD for the first time.

e.g., How were you informed? How did you feel? Was there anything that you appreciated about the experience?

Thank you in anticipation,

Andrew

I'm not a parent, but I am an autistic adult who has a parent.

My ma tells me that she didn't feel much of anything when I was diagnosed with autism, except glad that what she thought was true was confirmed (my dad was diagnosed with autism as a child, so it's not like she didn't know what it is, and she had an already example of an autistic person who was an adult and doing alright-ish).

For me it only confirmed years of suspicions, so I didn't really feel much of anything. I was glad to have a professional opinion supporting my own opinion, though. And glad that DS could now get some support at school.

From what I've read on WP, there seems to be two camps of parents. There are some like me, who have already travelled a long road before getting the diagnosis and are unsurprised at the news, and others who are blindsided by it. The parents who didn't suspect anything pre-diagnosis usually have very young (toddler) children, although some have older kids that have very mild symptoms or co-morbids made it harder to recognize.
I think it's important for professionals to try and gauge how prepared a parent is to hear the news. Some parents have complained that they felt confused and overwhelmed, and were given very little information about what the diagnosis meant and what to do next. Others don't need as much support. Also, some parents get upset if the professional is not sympathetic enough, while others get offended by sympathy because they feel it implies their child's symptoms are worse than they are.
Good luck! (not sarcastic)

I went with my son for a long evaluation. Normally I would travel with my wife, but she did not wish to attend. In fact, there was disagreement between us about getting the evaluation. As a result I was in a state of some anxiety, as I am generally not comfortable going alone to new places without much more preparation than I had.

In any case, the neurological assessment was the culmination of a long process with the school. Various teachers and specialists at the school told us that our son needed special supports and that we needed a CST evaluation and IEP and we had difficulty believing this. He is very intelligent, very verbal, affectionate and did not seem to us to have any troubles, beyond not getting along with others at school. But as he grew older, problems with coordination (handwriting, shoe-tying, any kind of athletics) became more evident, as did the social issues that his teachers tried to tell us about.

You may run into parents who for various reasons are not prepared to hear what is being told to them.

In any case, during the assessment my son was evaluated by the developmental neurologist and one of her colleagues and we were interviewed together. At the end of the sessions the neurologist asked my son to return to the other room for one final evaluation and then told me that the results were conclusive: he clearly exhibited the symptoms of aspergers syndrome, a form of autism.

I was in shock, really. I was not prepared for this at all and really could scarcely believe it. She could see that this was the case and immediately shut down my line of questioning the certainty by saying that she had sent him to her colleague down the hall for an independent opinion and that he agreed. She gave me some sheets with information about where to find more and asked me if I had any questions, and I think I was having a hard time talking because I was so profoundly shocked. The end of the session is a bit of a blur, really.

I talked with my son on the way back to the car and thought, this just cannot be right. It makes no sense.

When I told my wife she agreed, the diagnosis must be wrong. But I felt I should at least research the doctor's material and try to understand why she had this extraordinary idea about my son. So I began to research, which led among other things to this place.

I felt the doctor had a procedure which was geared toward parents who were already convinced that their child had some issues, and they were not really prepared for someone like me. But then, I did not know at that time that I was also autistic, so my sense of baseline normality or neurotypicality is erroneous. I don't know if she could have done anything differently, but I don't think she was prepared for quite the degree of shock that delivery of the diagnosis created in me.

Good luck with your training, Andrew.

I'm not sure what the OP is asking, exactly.

The actual delivery of the diagnosis was well done. I had the opportunity to ask some immediate questions. My beef was is the complete lack of direction and follow-up care. We waited 4 months for this appointment at a clinic that specializes in developmental evaluations, and it was very much, "Here's your label, have a nice day." The doctor gave me a one page summary that basically amounted to, "Child has Aspergers. Ask your school for an IEP. Consider further speech and OT testing," and a 40 page handout with every provider of every type of service in the county in alphabetical order. Many of the websites and phone numbers for the providers were out of date. It took a whole month to receive the full written report (which was dated as having been written within days of the appt.) Two months later I got a follow-up call from some sort of intern, who didn't have any resources to offer me beyond what I had found on my own by that time, nor any insight as to what my son needed. Nobody seemed to be able to give me any guidance on whether ABA would be appropriate for my kid, or where else to get help with behavioral issues.

I agree that the questions could be less open-ended. I am not exactly sure what is being asked either.

Our son's diagnosis was delayed for 2 yrs b/c of a combination of denial on our part and the ignorance of others. We had suspicions that we happily ignored b/c at that juncture, we were in no rush to burden our child with a label, and frankly did not see our son as being disabled. Smart of us in hindsight? Probably not, but that was how we felt at the time, for good or ill.

We were referred by our ped to the county at the 2 yr old mark, but did not have confidence in the need. His concerns were that my son cried too much when he got shots, instead of the things I worried about like not being able to point with one index finger at 1. Also, when he mentioned the one overlap concern about his lack of eye-contact and I responded by asking if he suspected autism, he said there was no way it was autism b/c he was snuggly and affectionate. The county didn't think there was an issue at the phone screen b/c he was verbally on target, he was reading at 2, and he was "smart." (The quotes are meant to indicate the stupidity of associating autism with not being smart. ) Hyperlexia is not apparently a thing they knew about and being "smart" meant he was not disabled, (sarcasm) I was more than happy to drop the whole thing b/c at the time that was where my head was at..

At 4 we did got diagnostic testing with the public pre-k to rule out autism. We could not. Luckily one of the few things our district does right is the diagnosis. They use ADOS, when apparently this is not the general rule. So he got a diagnosis. By that point, I had reluctantly made myself do some reading on autism and started lurking (but not posting) here. I learned more from the people here than anywhere else, and eventually I started posting here. By that point of diagnosis, I was unsurprised.

I am not sure what you mean by "appreciated" but I guess I appreciated that they used the ADOS and did not screw up the diagnosis. If you mean "bedside manner," those things matter little to me, as long as the people are respectful and notcondescending. The main thing I cared about was accurate information. They were not aware of a lot of the specifics of our particular presentation, or how to deal with them. They have too many different things to have to know how to diagnose to get into those types of specifics.

One thing I want to add is that you're probably going to see a fair number of relatively high-functioning, undiagnosed parents who may or may not be aware of their own "issues".
Just something for which you should be prepared.

Oops. Am I that obvious?

No, I was talking about myself.

I have two kids who have been diagnosed (in 2002 and 2004). I'm in the mood to tell a story so hold onto your hats...

The first time it was awful. I had known since he was a baby that there was something weird about him, but it was always dismissed because he was my first child ("first child syndrome" I guess), also they said maybe he's deaf or maybe he's severely sight impaired. Anyway... our pediatrician said he'd do something if he was still like this when he turned 3. He was still like it when he turned 3, so we were referred to the developmental pediatrician.

By the time he was 3, I knew he had autism, but I was under the delusional impression that autism was kind of like a sickness- I thought they would tell me that he had autism, and then tell me what to do to fix it. Of course that's not how it works. But this guy who evaluated him was such a doomsday predictor! He told us that our son "couldn't learn", was "mentally ret*d", and did not recognise us as his parents (doesn't recognise anybody) and doesn't feel love. What a ray of sunshine. I went away from the place literally speechless.

The second time was different for a number of reasons. (1) I knew that autism was a lifelong disorder that they were not going to magically fix within 2 months. (2) We were already in the system so people took me more seriously and we got in faster. (3) We got a different dev.ped. and he was much nicer. (4) Our younger son regressed around a year.

The guy who diagnosed my second child actually listened to what I thought about my child, which was nice, and he seemed to think of him as a human and treated him like you'd treat a 2 year old, rather than how you'd treat a "mentally ret*d thing" (however that would be).. so I guess I just liked him better. He told me that my son has a lifelong disorder, but he also pointed out some of the positive things he noticed during his evaluation. He also told us about the services available for autistic children in the area, which the other guy never did. (We already knew about many of them, but it was still nice to have someone giving you somewhat of a plan to move forward). I went away feeling pretty good about it. It was kind of sad to know my other child is also autistic...but at the same time now we had the label to get the appropriate services, and he was young enough to get the full benefit of early intervention, so I was excited about that (my other kid, due to the waiting list, barely got any early intervention).

Bottom line: although I know autism is lifelong, some positivity goes a long way. It's good if you can listen to the parent (even if they are a little delusional, they still know that child better than you do). Also, please treat the kids like human kids.

The people that delivered the finding did it in person, there were three of them. They smiled a lot and were nice and sympathetic.
My wife and me basically knew this already. We'd run through the M-CHAT test online and independantly scored around 19/21 a little while before, so that was pretty emphatic to my mind.

But..there is still something about having that proclamation made that is kind of final.
They talked about how our son might grow up and start talking and lead a fairly normal life, or be non-verbal and severe all his life, and there was no way to tell.
But..and this is something that even if it was a lie (I do not thing it was) I did appreciate none the less - the paediatrician was gazing at my son and said almost to himself that in spite of what he has told us he had a gut feeling, something he could not put his finger on, but that he felt our son was "Going to be OK".

They gave us some pamphlets and stuff. I recall going out in the parking lot and it was sunny and hugging my wife and wondering what to do next. We went for a drive to a cafe and went through the pamphlets and there was one that had an image of a tall and handsome teenage boy, lieing in a hammock with a weird smile on his face with his mum tousling his hair like he was a toddler and this image has stuck in my brain. I found it disturbing, to me it may as well have been sub-titled "here's what will come to pass".

The whole experience was hard and a bit shocking, and all that sort of thing.
I don't suppose there is an easy way to break news like that!

And you were talking about me! NIce to be in such good company, here.

I've been on both sides of this discussion (the one delivering and the one receiving the diagnosis). From the receiving end, for me, it was both a relief (I had been pretty sure for 10 years - from birth- before he got the diagnosis at age 10) and a bit of "Wow. So this is really it." For my husband, it was a very new idea, and he needed a lot of support to understand it, but he was always accepting of it. Even though I had "known" this is what it was, the psychologist I spoke with was very helpful in sharing strategies and ideas with me. In spite of my own degree and experience, I sometimes forget to apply the stuff I tell other parents to my own life and my own child. One of the specialists (an OT), who was also a colleague of mine, kept telling me she was "so sorry" and "was I ok with this?" over and over. Frankly, that pissed me off. I didn't need sympathy. I didn't think this was the worst thing to have happened in my life, as she seemed to believe. What this diagnosis does is impart some understanding and some direction. Those are positive things.

From the delivering standpoint, several pp have hit upon a very important thing- parents will sometimes start to see themselves and have many more questions and need additional processing time. Sometimes you will realize straight away that the parent has a lot in common with the child, and that is important to take into account. This can be really overwhelming if the parent doesn't realize he/she could be on the spectrum AND the child is on the spectrum. It's a lot to process. I have sat in meetings where we spent a good half hour just letting dad or mom process aloud their own experiences and how they fit this diagnosis.

From both perspectives, allow time for questions that come up right there, and questions that will come up later. For many parents, it's an introduction to a whole new world that may have a stigma attached. I've worked with parents who have begged for an emotional disability or ADHD diagnosis instead because autism feels terrifying to them. For others, it's confirmation of what they have known. Understanding which type of parent you are dealing with can help you tailor your delivery. In either case, normalizing it is important, in my opinion. This isn't a death sentence.

Working in the schools, I have always introduced the idea that I would be looking for autism (and anything else) based on reports of X, Y, Z... that way parents aren't blindsighted (in the school setting, when they are often referred by teachers, parents are not always seeking out a specific diagnosis and may be surprised by what we see. If you are working in a clinical setting where parents self-refer, you may not have this issue) and they have time to do a little of their own research. Blindsighting a parent is not a good thing to do, and it doesn't feel good to have it down to you.

Just some random, not well-organized thoughts.

What an awful guy. I thought that sort of thing happened in the 60s, not now.

I don't think it does happen now. It was only 12 years ago but a lot has changed in 12 years, I've found anyway. He was old; probably retired now. When my second child was diagnosed, the person was a lot younger (he looked like he was fresh out of uni actually) and like I said, much better approach.