Autism SCQ questions
October 14, 2021 6:00 AM   Subscribe

I need some help with a few of the questions on the SCQ because my child appears to do some of the things they mention, but I'm not so sure he actually does. More details below!

So, I am having a bit of trouble answering a few of the questions on the form. My problem is that I have two boys very very close in age, only 11 months apart, they are now 5 and 6 years old. My 5 year old is being assessed for autism and I am filling in this questionnaire.

The parts about having a best friend and imaginative play are really confusing to me because he plays a lot with his older brother. When they were a little younger they liked the same cartoons and would often get the stuffed animals from the cartoons and play games together stuffing the animals into cars and zooming them around the living room and playing out little games. As they have gone through preschool together, my older son has made friends and my younger son has tagged along and been part of the group and socialized that way, and if you asked him he would SAY he has friends and a best friend, but he has never made his own friends and is only able to socialize with others after a lot of support and really getting comfortable with whatever environment it is over months and he resists getting to know new people pretty much full stop.

The other thing making it hard for me to do the questions is that he is extremely attached to me and on the surface it appears that he is affectionate to me. But- even though he asks for like 1000 hugs a day, our OT described it more as coming to me for deep pressure to regulate himself and I feel that's probably pretty accurate. So, I feel like he wants to share enjoyment with me and his brother, but I don't think he tends to want to share enjoyment with anyone else that I've ever observed. I would also say that he looks at me personally very directly but very rarely anyone else. So for that question about eye contact should I put what is regular for him?

For the sharing question I was confused a little because he goes out of his way to make sure that we buy enough of whatever toy or snack in order for there to be enough for his brother and they don't have to share. So it seems like he thinks about others, or is that ensuring that he won't have to share?

I feel like I am tempted to answer the questions based on his extremely unique relationship with me and his brother and I am coming up with the exceptions to the norm. For example he did help me clean the windows once, but I think in reality it would not be accurate to say he ever really spontaneously imitated us in any regular way.

If anyone reads this who has a child who sounds similar in terms of their dynamic I would be very interested to hear any wisdom or insight. He seems super close with me and his brother but not really anyone else.
posted by catspajammies to Human Relations (7 answers total) 1 user marked this as a favorite
I used to administer the SCQ with parents, so I can answer some of this from that perspective. If you had asked me this in that professional capacity, I would have tried to get you to tell me what is the norm for him, not what he does with one or two special people, or has only done once.

The SCQ is a blunt instrument, honestly. Depending on how your particular clinician does their diagnostic process, there's likely to be another point where it will be relevant and useful for the clinician to know exactly this sort of detail. It can be important to know that he does share enjoyment with specific people, or that once in a while he may imitate some certain things, or that he has participated in imaginative play when supported/led in doing so. That's absolutely part of the full picture of understanding and working with your unique child.

You might think of the SCQ as the opening step of a longer process. It's basically asking "is there enough of a question here about a possible diagnosis that it's worth the parent's, child's, and my time to do the more in-depth diagnostics?" From that perspective, if you find yourself waffling on "well, you COULD say yes to this or you COULD say no, depending on xyz, but I have some concerns that the way my child does it is not quite the way a neurotypical child does it," it's not unreasonable to err on the side of reporting that your child's behavior is sometimes not neurotypical in that way, to move you ahead to the part of the process where the clinician will really dive into "okay, but what do you actually mean by that, under what circumstances, etc."

(Should note a minor caveat that it's been a solid decade since I last laid eyes on the SCQ. Possibly there is a newer version that's less of a blunt instrument! But I suspect not. It's a not-particularly-nuanced screener by nature.)
posted by Stacey at 6:39 AM on October 14, 2021 [4 favorites]

My policy on this is to answer how he is on his worst day, not on his best day.
posted by bq at 7:58 AM on October 14, 2021 [3 favorites]

I answered by what she would prefer to do without support. With my help, she would play with other children and make eye contact and have conversations. Without external intervention at that age she would have happily played with her own toys for hours ignoring everyone else. Definitely note the difference interacting with a sibling and another kid.
posted by dorothyisunderwood at 8:44 AM on October 14, 2021 [1 favorite]

Stacey's answer is very consistent with my recent experience in this process. In reading the questions, I had concerns much like yours, and although they said the forms should take about an hour, I spent more like three going in circles like this. The actual interview with the psychologist was much better and they did very much appreciate that level of nuance, but the form answers that will serve you best are indeed the "worst case" scenarios, because if he actually needs help with that stuff, you don't want to give a false impression that he's doing it all independently at an age-typical level. In our case, when the psychologist talked to the child, the child did indeed give contrary answers at times. Those were duly noted (and considered positives when it was things along the lines of him considering himself to have a best friend), but there was no sense of "well the adult must have been exaggerating!" or anything like that associated with it in the assessment. Also, in some cases I came to have the impression that some of the items were more like survey questions than intended to be diagnostic, as if someone might later say "regarding the children eventually diagnosed with X, Y% of parents answered Q10 as 'yes'."
posted by teremala at 8:57 AM on October 14, 2021 [1 favorite]

I had to help assess a relative's mental state and had a lot of the same questions. If he had great supports, loved ones present, and on a general good day, he was at one level. If anything wasn't ideal - pain, unfriendly staff, just a bad mood, he had a much worse day.

A doctor friend said to fill in the questionnaire while imagining him on a worse-than-normal day - not a nightmare day, but just a not-great day with the bare minimum of support - because that way he'd test on the "lower" end of his range and thus was more likely to get the support he needed. Better to have too much support than too little!
posted by nouvelle-personne at 12:38 PM on October 14, 2021 [4 favorites]

From a neuroatypical adult, I think one way to consider it is that thinking about or interacting with others often takes a lot of energy for people on the spectrum. So there are things that are relatively easy in certain circumstances because you know the person well, aren't anxious around them, they know what not to do if they want to avoid bothering you, there isn't too much sensory input to deal with, you have set routines, etc.

So, I'm sure he is showing you affection and I'm sure he is thinking of his brother's needs! But think about when he's not 100% in his comfort zone -- what happens then? That's generally what things like this are trying to measure.

You know your son super well and are a great mother. You can tell what he's up to! He can be affectionate sometimes or social sometimes and still be on the autism spectrum.

I say this in part because there are some people who aren't autistic who always try to find can I say this politely...robot-esqe explanation for everything autistic people do. So we're never being affectionate, we're always "stimming" or whatever. I have known a lot of autistic people, including people who were only partially verbal and had high care needs and were pretty classically autistic. They all can and do show affection and compassion! It just looks different and/or is harder for them in certain contexts.
posted by Rock 'em Sock 'em at 3:48 PM on October 14, 2021 [7 favorites]

Response by poster: Thank you so much everyone. This was really helpful. I went back through and did the questions again with my husband and added a comment if I wasn't sure. I think I wanted to be more questioning about the hugging because lots of people see the hugging and immediately assume he can't have autism and that's held us back a lot on getting services and support.

It reminds me of my situation with migraine- I went to the ER and when I said the headache had switched sides, the doctor was like: of well, that CAN'T be a migraine, they are only unilateral. Sorry. I don't think anything here will really help. For a tension headache you should use peppermint oil and go for a walk.

Like, actually, I KNOW that migraines can, in fact, feel as though they are going back and forth, and you can have a tension headache and a migraine at the same time. But the next time I need to go to the ER I am just going to say that its unilateral so I can just have the lidocaine injection, thank you.

So this reminds me of that. I know that he can be affectionate and he loves his brother and he is sharing... but there are a lot of myths that I'm probably even trying to unlearn myself... and I think I need to learn more and more about autism and my son and understand HIM... but that also takes a lot of time, so I thank all of you who always help me and are kind when I ask things in a clumsy way.
posted by catspajammies at 1:08 AM on October 15, 2021 [1 favorite]

« Older Case for ZTE Grand X View 4 Tablet?   |   How many RAM slots are here? Newer »

You are not logged in, either login or create an account to post comments