Car­ol Quash

Mor­gan Lewis was di­ag­nosed with autism at the age of 19, and has been for­tu­nate enough to have had a cir­cle who un­der­stood and gave her the sup­port she need­ed, even pri­or to her di­ag­no­sis. A lit­tle over a decade lat­er, she is get­ting ready to com­plete a first de­gree in so­cial work with a mi­nor in psy­chol­o­gy at the Uni­ver­si­ty of the West In­dies, St Au­gus­tine cam­pus, with the hope of of­fer­ing the same type of sup­port, but from a pro­fes­sion­al per­spec­tive.

“I al­so ben­e­fit­ed a lot from pro­fes­sion­als who un­der­stood me and my con­di­tion,” Lewis told WE in a phone in­ter­view.

“But all of those pro­fes­sion­als were neu­rotyp­i­cal, so I think it would be kind of cool to have some­one who can un­der­stand things from the oth­er side of the fence, and al­so, in many in­stances, ex­plain to fam­i­ly mem­bers what might be go­ing on with their loved ones. I hope to work in men­tal health.”

Hav­ing worked in graph­ic de­sign and il­lus­tra­tion on a free­lance ba­sis, she said she start­ed to feel burnt out and de­cid­ed she want­ed to do some­thing re­lat­ed to pro­vid­ing ser­vices to oth­er peo­ple on the spec­trum, in par­tic­u­lar oth­er adults, be­cause of the lim­it­ed amount of tran­si­tionary ser­vices for bridg­ing the gap be­tween ado­les­cents in­to adult­hood.

Lewis is clas­si­fied as an autis­tic with low to mod­er­ate sup­port needs, but ex­plained that there are many things with which she still re­quires as­sis­tance or a lot of prepa­ra­tion time in or­der for her to be able to han­dle them.

“There is a bit of a mis­con­cep­tion with how peo­ple fit on the autism spec­trum – go­ing from high on one end and be­ing su­per autis­tic, and then low on one end…It’s re­al­ly more than that. There is a col­lec­tion of symp­toms that you ex­hib­it, and those symp­toms can vary in terms of their pre­sen­ta­tion and their in­ten­si­ty. Some­times they’ll be more in­tense than oth­ers. So dis­cus­sions of it have kind of moved away from con­cep­tu­al­is­ing the spec­trum of high to low to what are now called sup­port needs,” with peo­ple hav­ing dif­fer­ent lev­els of sup­port needs de­pend­ing on what they need sup­port with. She said, for ex­am­ple, one per­son may be able to hold down a job but may not be able to dri­ve.

“Is that per­son more or less autis­tic than some­one who can dri­ve but can­not be em­ployed in par­tic­u­lar kinds of work?”

Lewis ex­plained that while it still is a spec­trum, it’s in the same way that peo­ple see colour- with a spec­trum of hues, but you al­so have a spec­trum of sat­u­ra­tion and of bright­ness.

“It op­er­ates in mul­ti­ple di­men­sions, rather than just high to low.”

She said in the past, some­one who would have pre­vi­ous­ly been called high-func­tion­ing would have been con­sid­ered as some­one who didn’t need sup­port, while some­one who was low-func­tion­ing would not be seen as in­de­pen­dent.

“There are a lot of tricky ideas that are easy to per­pet­u­ate when you have an all-or-noth­ing high-or-low mod­el. That isn’t to say that they don’t ex­ist with oth­er forms of con­cep­tu­al­is­ing autism, but they are less of a risk, and it al­lows for a more nu­anced view of what peo­ple need, and what peo­ple can do with­out as­sis­tance.”

Lewis said her di­ag­no­sis came fair­ly late, which is not un­com­mon for fe­males, be­cause

most times the pre­sen­ta­tion of symp­toms and the way that girls are so­cialised means that there is less of a like­li­hood to be di­ag­nosed in ear­ly child­hood. She said that was al­so be­cause the di­ag­nos­tic cri­te­ria when she was younger were dif­fer­ent and have evolved over time. For her, a di­ag­no­sis came with re­lief.

“It re­con­tex­tu­alised a lot of my child­hood and my ado­les­cence,” as there were now words for what she was feel­ing and for her be­hav­iour.

“There’s a term for it when I can’t tune out every­thing that I’m hear­ing and I have a headache. There’s a term for when I am ex­haust­ed all of the time be­cause I’m in these very noisy and over­whelm­ing and over­stim­u­lat­ing en­vi­ron­ments, and I don’t know how to tune it out, or I’m not ca­pa­ble of tun­ing it out. There’s a rea­son why I have dif­fi­cul­ties read­ing peo­ple’s in­ten­tions or re­ac­tions…I was able to have the vo­cab­u­lary to ex­press what I was ex­pe­ri­enc­ing and what I need­ed.”

She said it is one thing to know that you feel dread­ful, and an­oth­er thing to be able to iden­ti­fy why you feel dread­ful.

“It’s very free­ing.”

Lewis be­lieves it al­so helps to have a school en­vi­ron­ment to sup­port peo­ple with autism, and she laments that while there are a lot of ed­u­ca­tion­al in­sti­tu­tions that like the idea of en­rolling an autis­tic stu­dent, they don’t nec­es­sar­i­ly like the re­al­i­ties of what sup­port­ing that stu­dent would mean. She said NGOs such as the Autis­tic So­ci­ety of Trinidad and To­ba­go (ASTT) do what they can to give that sup­port, but there are lim­its to the sup­port they can give.

“And de­spite all of the good work that is done and de­spite the de­sire to do more, there’s on­ly so much that you can do and on­ly so many peo­ple you can reach. It means that in­evitably, if peo­ple are not able to seek out the ser­vices where they ex­ist, they will be left out, which is un­fair and sad and trou­bling. But I think it doesn’t di­min­ish the good that is done and the good that peo­ple still seek to do.”