REACTION TO DIAGNOSIS:

Now I’d like to ask a few questions about your reactions to the evaluation process.

1. When did you first realize that your child had developmental concerns (probe for details)? 2. What were your feelings at the time that you realized that?

3. Have your feelings changed over time? If so, how?

4. I’d like to ask about when you learned of [name’s] diagnosis. Where were you? Was anyone there with you? Can you tell me about your thoughts and feelings at that time?

5. Parents sometimes wonder or have ideas about why their child has special needs. Do you have anything like that that you wonder about? (Prompt if necessary. For example, some parents feel that they might have done something to cause their child’s condition; others believe that God or fate must have a reason for giving them this child.)

6. Who else have you talked about the diagnosis with (e.g., family members, people in the community)?

Circle all that apply a. I have not yet talked about the diagnosis with anyone ABA or Behaviorally based therapy Play Therapy PECs Family Support Services (e.g., ChildFIRST) Special Education Parent-Child groups

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b. Immediate family c. Extended family d. Friends

e. Members of community

f. Other health care or service providers

g. Other______________________________________________________________

Now I’d like to ask you some questions about your experiences during the evaluation. Please rate the following statements using this scale:

1=Strongly Disagree 2=Disagree 3= Neutral 4=Agree 5= Strongly Agree

1. I left the evaluation feeling confused. 1 2 3 4 5

2. I had time to ask questions during the evaluation. 1 2 3 4 5 3. The evaluation was carried out in a professional manner. 1 2 3 4 5 4. I was upset about the results of the evaluation. 1 2 3 4 5

5. I felt relieved after hearing a diagnosis. 1 2 3 4 5

6. The information I received was individualized to my child. 1 2 3 4 5 7. Having study staff follow up with me after the evaluation is helpful. 1 2 3 4 5

Finding useful services for young children can be difficult, and we appreciate you sharing your experience with us. How could the process of finding services for your child be improved?

This is the end of our follow up interview. Thank you so much for taking the time to speak with me today. Is there anything we haven’t talked about that you would like me to know? Can I answer any questions?

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Appendix D: LIWC Evaluation Terms Dictionary

% Evaluation terms 1 % provider* 1 therap* 1 service* 1 symptom* 1 autis* 1 intervention* 1 diagnos* 1 develop* 1 spectrum 1 criteria 1 qualify 1 evaluation 1 doctor* 1 learn* 1 inform* 1

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Appendix E

Transcript of Resolved, action-oriented example.

When did you first realize that your child had developmental concerns?

Um, it was back when we noticed he was doing things um a little later than let’s say my daughter did when she was a baby. Um it took him longer rrlike to learn to sit up by himself uhh took him longer to learn to walk. Obviously he wasn’t talking um and still non-verbal um and I rrjust could tell rrlike seeing him around other kids that he wasn’t on the same level as where he should be. Um rrlike he didn’t want to interact with any other kids. He wasn’t curious about what they were doing. Um he wasn’t making eye contact with us. Uh so things like that. I started noticing some things.

What were your feelings at the time that you realized that?

Um it took me a while to come to the realization. I rrjust kept telling myself rroh he’s just a late bloomer. Um youknow my friends would tell me rrlike their boys youknow developed late and youknow he’ll be fine and and things like that and I rrjust saw it getting, not worse but the older he got rrlike I could notice it more that he wasn’t like other kids his age. Um I think for a long time I was in denial that it was actually true um and I know the same was for my husband. Um we rrjust didn’t want to think that there could be something wrong um with him. So it was really um upsetting but then I finally came to a point after talking to our speech therapist rrlike it finally rrjust dawned on me that youknow there is something going on and it’s rrjust time to accept it and move forward and do whatever we can to help him.

Have your feelings changed over time? If so, how?

Yeahyeah she’s, they’ve both been very helpful but his his speech therapist and I have grown really close and she’s been really helpful um to me over the last couple months that she’s been working with us. So now I’ve youknow we’ve accepted it and we’re rrjust trying to navigate through this new world of autism because we we haven’t ever had anyone in our family or friends youknow that have kids with autism so it was a brand new world for us.

I’d like to ask about when you learned of [name’s] diagnosis. Where were you? Was anyone there with you? Can you tell me about your thoughts and feelings at that time?

Uh yes my husband was there. Um Imean I I know, I knew what they were going to say Imean it was pretty obvious that he was on the spectrum um but I rrlike I think I was rrjust hoping that by the end of the evaluation that they were going to be rrlike oh he’s fine he’s just developing late um it’s nothing to worry about um so I think it was rrjust wishful thinking um but then rrlike when they gave us the results then it was pretty it was pretty upsetting and uh I did get pretty upset towards the end um. It was rrjust a lot to to take in because all you ever want is your kid to be ok andso it was and it was scary Imean cause we’ve never dealt with youknow that before so it was rrjust a lot of emotions.

Parents sometimes wonder or have ideas about why their child has special needs. Do you have anything like that that you wonder about?

Um Imean sometimes I wonder rrlike youknow how this happened or why this happened umm but youknow they I’ve done some research and youknow there’s no proven facts for what causes autism so I’ve justkindof learned to youknow accept this is what it is and it’s not about what I could have done better or if I did something wrong.

45 Transcript of Unresolved, neutralizing example.

When did you first realize that your child had developmental concerns?

Um uh well I I had brought several concerns to the physician. Um Imean he he he’s been late with all of his milestones. But but they I I didn’t not um walk away from those visits with the physician thinking that it was anything other than um Iguess crazy mom. Um so uh uh Imean I I’ve sort of suspected since he was Idon’tknow 6 months. Um I rrjust youknow rrwell and and I don’t know that it it that I thought it was autism I just knew that he wasn’t meeting his milestones. Youknow he didn’t sit up when other kids sat up. He didn’t um crawl.

What were your feelings at the time that you realized that?

Um I rrjust I’m a registered nurse so um youknow I brought my concerns to the doctor um and they were just likeyouknow uh I remember the first time I brought my concerns um she said rrwell you can contact early intervention if you want to and they gave me a brochure. But it wasn’t “we’re concerned about this too” so I was a little frustrated because, frustrated but I have enough, I had enough clinical knowledge to know that yes he wasn’t sitting up yet but he was um an active, normal, functioning child. Um so I wasn’t I was rrlike sortof watchful waiting. Um and he didn’t crawl appropriately. He would drag the one leg but again the doctor was justlike hmm rrwell let’s watch and wait and so youknow he was he was definitely getting around um and he was pulling himself up and trying to walk and he eventually did start crawling appropriately. So I Iguess I was I would say I was confused, frustrated, concerned um but I wasn’t I wasn’t concerned to the point that I that it wasn’t something I couldn’t manage Iguess. I wasn’t overwhelmed. If that makes sense.

Have your feelings changed over time? If so, how?

Um well only because looking back I wish that I had known to be Iguess more persistent but I rrjust youknow I’m a I’m a new mom I’m an older I waited a long time youknow um I just sortof trusted the doctors that it was just me being worried. Um I don’t know if if anything could have been done

differently at 6 months Idon’tknow but um. I I’ll be honest with you and and say that I know that my son has challenges. I’m not convinced he has autism but I’m going to give him all the support that he needs. Um I I understood the report that they sent and I think that it’s um clear but I’m a little concerned uh Iguess I don’t understand the significance of some of the things that the doctor felt was significant. Um I they rrjust seem like normal childhood behaviors and like things a baby would do.

I’d like to ask about when you learned of [name’s] diagnosis. Where were you? Was anyone there with you? Can you tell me about your thoughts and feelings at that time?

Um they came out to me. Yes I was there I so um yes. We had um I had a concern that he wasn’t talking so I knew that there was something wrong um and the the physician did the M-CHAT screen and at the M-CHAT screen is when she said to me why haven’t you contacted early intervention and I said rrwell I nobody told me to. You the last time we talked about it youknow it was justlike it just might make you feel better but it wasn’t a you need to do this type of conversation. Um so she didn’t say autism um but she did say youknow she suggested the Drexel autism study so I knew that’s where they were headed. Um and youknow of course I was there during the evaluation and um the doctor called me afterwards and and told me youknow that he she felt that he was autistic and I understand her report and I understand that he meets all the all of the um criteria. Um Iguess maybe there’s a delay somehow. I rrjust don’t rrwell I I feel like I feel like he he also had um some hearing problems and once we had tubes put in his ears then he started talking because he could hear. So I I think that youknow he a lot of some of that communication

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deficit might have been impacted by the hearing. But I I think time youknow time reveals everything. I feel that I rrjust I I want to get him all the support he needs and youknow we’ll see what happens. No it was just me and Aiden and the ladies from Drexel. Um so she the doctor didn’t tell me there in person she called me later that evening and um told me over the phone and um I was sad. I was um it wasn’t a shock but I don’t Imean I was a little sad.

Parents sometimes wonder or have ideas about why their child has special needs. Do you have anything like that that you wonder about?

rrWell I do because um he’s adopted and um his mother has an intellectual disability and his birth father is unknown um and his his birth mother has a lot of other diagnoses. I don’t know if they’re all correct but she has a laundry list of them. Um so I do worry about youknow whether this is genetic or or the fact that she didn’t get prenatal care um that she was on um antipsychotics throughout her entire pregnancy um I don’t know what other if any street drugs that she was on I and like I said I don’t have any history of the birth father um and then youknow I worry about youknow did I did I give him the right formula did did he get the right youknow did he get enough of whatever he needed because he didn’t get breast milk um so. Youknow I I’ve thought about all of those things.

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