Learning More About Autism

This month is Autism Accep­tance Month, a time to give peo­ple a chance to edu­cate them­selves on what autism is and what it means to those who were diag­nosed with it. QMG Pedi­atric Neu­ropsy­chol­o­gist Dr. San­dra Clark works close­ly with kids of all ages and their fam­i­lies. We spoke to her to learn more.

What is autism?
Very broad­ly, autism is char­ac­ter­ized by foun­da­tion­al dif­fi­cul­ties with social inter­ac­tion and the pres­ence of repet­i­tive inter­ests and behav­iors. Every indi­vid­ual with autism is dif­fer­ent and can show dif­fi­cul­ties in these two areas very dif­fer­ent­ly, but all show dif­fer­ences in their devel­op­ment of social inter­ac­tion skills and rigid­i­ty in some areas of their behav­iors more so than indi­vid­u­als who do not have autism. It is what we call a neu­rode­vel­op­men­tal con­di­tion, which means that it is a dif­fer­ence in how the brain takes in and uses infor­ma­tion, changes how chil­dren devel­op skills such as lan­guage, and is present from a very young age. I tell par­ents that their child sees the world in a way that is dif­fer­ent than what we would expect from our own expe­ri­ences, which at times leads to chal­lenges, but can also be pret­ty amaz­ing for mak­ing us stop and see the world a bit dif­fer­ent­ly too.”

What are the ear­ly signs of autism?
One of the first and most com­mon signs of autism that par­ents notice is delayed lan­guage devel­op­ment. How­ev­er, we are designed to be social crea­tures, and babies start engag­ing in social com­mu­ni­ca­tion WAY before they devel­op speech. By six months old babies should be smil­ing at oth­ers, watch­ing their par­ents’ faces, mak­ing eye con­tact, and show­ing inter­est in what oth­ers are doing. All of those are the foun­da­tion for social inter­ac­tion, and with­out that inter­est in watch­ing and learn­ing from oth­ers, they are also like­ly to have delays in speech and oth­er impor­tant social skills that are char­ac­ter­is­tic of autism spec­trum dis­or­der. Most par­ents know that their child should be start­ing to say sin­gle words between 12 – 16 months of age, but chil­dren direct­ly com­mu­ni­cate their needs to oth­ers using non­ver­bal com­mu­ni­ca­tion before that. If your child is not start­ing to speak and is also not point­ing to or hold­ing things up to show you, those are ear­li­er signs of autism more so than just speech delays. Repet­i­tive inter­ests and behav­iors are some­times more dif­fi­cult to spot in very young chil­dren. Stereo­typed move­ment such as hand flap­ping can be a sign of autism, and some­thing to bring up with their doc­tor if you see it exces­sive­ly. Repet­i­tive play inter­ests are anoth­er sign that can be hard to tease apart between neu­rotyp­i­cal play in young chil­dren and a child with autism. There are dif­fer­ent rea­sons chil­dren may not play with toys appro­pri­ate­ly, specif­i­cal­ly lin­ing them up rather than play­ing with them. How­ev­er, if they are more inter­est­ed in parts of toys, such as the pro­peller of a plane rather than the whole plane as a toy, or tak­ing toys apart rather than play­ing with them, and only play with toys in unusu­al ways, those are more clear signs of autism.”

A more sim­ple list of con­cerns to con­tact a child’s pedi­a­tri­cian about:

  • not mak­ing eye contact
  • no smil­ing at oth­ers by 6 months of age
  • not bab­bling, point­ing, or mean­ing­ful ges­tures by 12 months
  • not using 2‑word phras­es by 24 months of age
  • not show­ing items to oth­ers or shar­ing their inter­ests with others
  • no one-word com­mu­ni­ca­tion by 16 months of age
  • not respond­ing to voic­es or their name being called
  • using or focus­ing on parts of toys or objects

How is autism diag­nosed?
Autism is diag­nosed by see­ing a pro­fes­sion­al who is trained to use dif­fer­ent sources of infor­ma­tion to tease apart symp­toms of autism and how they over­lap with oth­er poten­tial con­cerns. They col­lect back­ground infor­ma­tion from par­ents about ear­ly devel­op­ment and mile­stones, have par­ents rate char­ac­ter­is­tics of social behav­ior they see at home and with oth­ers, ask teach­ers or day­care providers about what they see in set­tings out­side the home, and also com­plete an assess­ment that uses dif­fer­ent tasks to see how the child engages in social com­mu­ni­ca­tion with oth­ers. The assess­ment is a snap­shot’ of the child’s behav­ior, so infor­ma­tion from par­ents and oth­er care­givers is a very impor­tant part of the eval­u­a­tion. Sim­i­lar­ly, par­ents and care­givers might not know which things they are see­ing are impor­tant or how to inter­pret their con­cerns, so hav­ing the child com­plete assess­ments in the clin­ic with a trained pro­fes­sion­al is very impor­tant as well. A thor­ough eval­u­a­tion that con­sid­ers all of those sources of infor­ma­tion is most appropriate.

The brain doesn’t know box­es’ that we use for under­stand­ing how we work, so labels like autism’ and AD/HD’ and anx­i­ety’ among oth­ers are all terms that we use to help us explain and under­stand cer­tain types of behav­iors and how to address them. How­ev­er, there is not an autism’ box in the brain, and symp­toms of autism also over­lap with oth­er con­di­tions. Espe­cial­ly when chil­dren are very young, their neu­ro­log­i­cal sys­tem some­times hasn’t devel­oped enough for us to clear­ly see that lin­ing toys up is a symp­tom of their anx­i­ety, or that lack of atten­tion to oth­ers may be AD/HD. How­ev­er, there are often clear signs that a pro­fes­sion­al can use to deter­mine that autism is present and that ear­ly iden­ti­fi­ca­tion and inter­ven­tion for autism spec­trum dis­or­der is very impor­tant. Ear­ly inter­ven­tion is most strong­ly cor­re­lat­ed with devel­op­ment of impor­tant skills, so it is very impor­tant to have autism assessed for ear­ly, to under­stand why a child is show­ing delays and what strate­gies will be most effec­tive for them.”

What is the spec­trum”?
Autism is not a sim­ple con­di­tion that we can scan the brain or com­plete a genet­ic test and eas­i­ly iden­ti­fy that an indi­vid­ual has it. There are not caus­es that apply to all or even most chil­dren with autism, there are a vari­ety of genes that might be asso­ci­at­ed with autism, and envi­ron­men­tal fac­tors that may make it more or less like­ly for a child to show symp­toms of autism. Because there are so many routes’ lead­ing an indi­vid­ual to signs of autism, there is a range of how autism presents in each per­son. That is why autism there is a spec­trum dis­or­der.’ Social com­mu­ni­ca­tion dif­fi­cul­ties, for exam­ple, might present as delays in devel­op­ing lan­guage for many chil­dren, but for oth­ers speech devel­ops at a typ­i­cal’ or even advanced rate, though they may strug­gle to under­stand how to use lan­guage mean­ing­ful­ly to have back and forth con­ver­sa­tions with oth­ers. Repet­i­tive inter­ests and behav­iors may con­sist of focus­ing on trains for hours on end with­out inter­est in oth­er things for one child, but also might look like a lit­tle girl obsessed with My Lit­tle Pony and not an obvi­ous dif­fer­ence from oth­ers. Many refer to chil­dren as being high func­tion­ing’ or low func­tion­ing,’ and par­ents often ask me where is my child on the spec­trum.’ We talk about the sever­i­ty of autism symp­toms in terms of how much sup­port they need to func­tion in their dai­ly envi­ron­ments, but the sim­ple terms for low and high func­tion­ing are not good ones for describ­ing any indi­vid­ual with autism. One indi­vid­ual may have high lan­guage skills and intel­li­gence but strug­gle in inter­ac­tions with peers in school or their job. Anoth­er may be gift­ed in their abil­i­ty to under­stand how things they see fit togeth­er and skills for solv­ing visu­al puz­zles, but strug­gle with lan­guage. Just like indi­vid­u­als who do not have autism, they are indi­vid­u­als with their own sets of inter­ests and abil­i­ties, and each per­son expe­ri­ences autism dif­fer­ent­ly from the next.”

What are the next steps after receiv­ing a diag­no­sis of autism?
This depends a great deal on how old an indi­vid­ual is when they receive a diag­no­sis. Research has shown that young chil­dren who receive ear­ly inter­ven­tion are more like­ly to have out­comes with more inde­pen­dence and high­er emo­tion­al well­be­ing lat­er in life. If a diag­no­sis is received for a young child or school-age child, this may mean set­ting up ser­vices for speech and lan­guage, foun­da­tion­al func­tion­al skills, and oth­er areas of func­tion­ing they expe­ri­ence dif­fi­cul­ty in. Ear­ly edu­ca­tion­al sup­ports are also impor­tant for set­ting up a net­work of sup­port. For old­er indi­vid­u­als, addi­tion­al sup­ports might also be avail­able giv­en a diag­no­sis of autism, such as coun­sel­ing sup­ports, job coach­ing resources, and finan­cial assis­tance. Often, receiv­ing a diag­no­sis as a teenag­er or adult is more about bet­ter under­stand­ing them­selves and help­ing oth­ers around them to under­stand how and why they inter­act the way that they do.

Autism Speaks has excel­lent resources, includ­ing 100 Day Kits for young chil­dren and school-age chil­dren, includ­ing sup­ports for par­ents, sib­lings, grand­par­ents, and friends (Autism Speaks Tool Kits). They also have a Guide for Adults that is help­ful in explor­ing sup­ports, resources, per­son­al accep­tance, if and who to dis­close a diag­no­sis to, and rights as an indi­vid­ual with autism (A Guide for Adults).

For more infor­ma­tion on ser­vices and sup­port avail­able at QMG, vis­it https://​quin​cymed​group​.com/​m​e​d​i​c​a​l​-​s​e​r​v​i​c​e​s​/​b​e​h​a​v​i​o​r​a​l​-​h​e​alth/.

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