Autistic and Depressed Adults Report a Similar Sense of Control

Two studies with one measure in common

Autistic adults and adults treated for depression answered a questionnaire about control over their own lives alike. The scale has five items, among them the statement “There is little I can do to change many of the important things in my life,” and on that scale, and on three scales of worry, the two clinical groups did not differ significantly. Both reported far less control than adults with neither diagnosis.

The comparison closes a pair of studies published in 2019 in the journal Autism by Barbara van Heijst, Marie Deserno, Didi Rhebergen and Hilde Geurts of the University of Amsterdam. Their question was why depression accompanies autism so often, given prevalence work putting a lifetime depression diagnosis at up to 40.2 percent of autistic adults. Two explanations were tested: that the conditions share symptoms which get counted twice, or that something outside both conditions connects them. A shared origin in the genes was neither tested nor assumed, the method having been chosen because it requires no common cause.

The first study drew on a Dutch cohort of 258 people with a primary diagnosis of depression, aged 60 to 90, alongside 117 adults of similar age with no history of it. All completed questionnaires on autistic traits, depression, worry and control, from which the researchers estimated a network: each subscale a point, each line an association that survives accounting for all the others. Of the symptom overlaps the field expects, one appeared, difficulty switching between tasks with low motivation. Control had more connections than any other point in that network.

The second study recruited 173 adults with a clinical autism diagnosis and 70 non-autistic adults, aged 31 to 89, and repeated the analysis with a shorter depression measure. Direct associations between the autistic traits and depression were weak. Desire for routine and self-rated social difficulty were both associated with low control, and low control was strongly associated with depression, while the link from social difficulty to social worry seen in the depressed sample was absent here.

Convergence goes only so far. Bootstrapping put the stability of the connection counts at 0.52 in the first study and 0.44 in the second against a threshold of 0.5, the index identifying the bridge point was unstable in both, and the two depression questionnaires differed, so the authors decline to conclude that control is the bridge between the conditions. The group comparison rests on firmer ground: with age controlled, the effect of group on worry and control was significant, F(8, 1120) = 41.94, p < 0.001, and removing the autistic participants who reported a current depression left the result unchanged.

What it means for you and your child

Both samples were adults, one running from 60 to 90 years old and the other from 31 to 89. Neither included a child, so anything said about a twelve-year-old here has to be reasoned toward rather than read off the result. The reasoning is worth doing, because the measure at the centre of both networks describes something a child meets every day.

A timetable changed at short notice, a supply teacher, a room move, a trip cancelled on the morning of: the usual account of the distress that follows is that autistic children dislike change. In the autism network, desire for routine and self-rated social difficulty were the two traits most strongly associated with low perceived control, and low perceived control was the point most strongly associated with depression. A change nobody consulted the child about is, in the terms these questionnaires use, an instance of precisely that.

Among the autistic participants, 19.6 percent reported a current depression and 31.2 percent a past one, against none and 5.7 percent in the non-autistic comparison group. Withdrawal and flattened affect, the authors note from earlier reviews, are attributed to autism when they are signs of depression and read as depression when they are simply how a person is. A 2018 systematic review they cite found that the standard depression instruments have not been shown to be valid for autistic adults, and whether the wording of the scale used in the second study suits autistic respondents has never been tested. Depression in an autistic person is easy to miss and easy to over-read, and the instruments meant to settle the question were validated on other people.

That gives a parent two things to put to a clinician. The first is procedural: whether a child’s withdrawal has been assessed as depression or assumed to be part of the autism, and which instrument produced the answer. The second concerns control. These studies measured it with five plain statements about whether life is one’s own to steer, and no equivalent has been validated for children, so with a child it is a conversation rather than a score.

If your child’s answer is that nothing about the day is theirs to decide, that sentence belongs in the appointment.