Autistic adults frequently experience social challenges that can prevent them from experiencing success in their educational and work opportunities. What kind of autism help is needed?
The best autism help begins while students are still in school, but there are important supports needed for autistic adults who are already navigating the adult world.
Autism challenges
The problem for these adults with autism is that their struggles are invisible to others.
Perhaps this needs to be restated.
Their struggles can cause a lot of adult social and work difficulties.
It’s the causes of these autism challenges that are invisible and often misunderstood by others.
That’s why teachers, parents and support people can totally miss teaching important skills that need to be taught.
The difficulties these individuals have generally fall in the category of social . . . particularly interpreting the social environment and managing social situations and relationships.
Here’s an online quote from one autistic adult:
Others on the spectrum have made statements like this:
- Sometimes I get into trouble for something I have said or done, but I don’t understand why I just got into trouble.
- Why do I keep getting myself in trouble with people? I'm always saying stuff I shouldn't say and offend them.
- I'm always told I say inappropriate things at the wrong time and tend to say insensitive stuff. I never know what's accepted or what people's boundaries are. Why?
Autistic adults - what gets missed?
It’s easy to misunderstand the social needs of those who do not appear to demonstrate difficulty with verbal communication.
Although many with an ASD diagnosis experience a range of delays or differences in their communication development, there are some who develop speech and communication abilities following the patterns of typical development.
Unfortunately, most parents and teachers would describe them as not having communication problems.
Why their problems are not identified
The other characteristic of this group is that they are individuals who have performed in the average to above average range in their academics. In fact, many of them may perform at a significantly capable level in at least some of their academic subjects.
In the past, the individuals most commonly in this group have been labeled “high skilled” or those with Asperger’s.
The definitions have changed and those terms are currently considered inappropriate because they don’t adequately recognize some of the significant challenges these individuals can experience, particularly in areas such as sensory needs or social learning.
Currently, the term neurodiverse is considered a better way to describe this group. Neurodiversity is a concept that encourages recognizing the differences in human function and stresses that it is not “one-size-fits-all.”
This movement aims to accept the differences in people rather than trying to teach those with ASD with a goal to “make them normal.”
In spite of this philosophical change of direction, autistics still need to manage a social world where they may be viewed as unusual or weird and their behavior may result in social isolation.
How autistic individuals manage social situations
Through their school years, autistic students do learn to manage some social situations. Currently, many autistic teens and adults describe their experiences “masking.”
Masking refers to behaviors individuals adopt to try to compensate for their social differences or to try to hide their difficulties. Examples of masking are:
- Trying to force eye contact
- Imitating facial expressions and gestures of others
- Developing “scripted” answers to conversation topics
- Disguising stimming behaviors
Social skills training may not provide what they need
They may have had the benefit of social skills training in school. That type of learning experience may or may not help long term life opportunties. The problem is generalization.
“Social” is a moving, changing thing. It doesn’t occur in the same way all the time. That means an individual in a social learning program can learn skills to manage specific social events, but it doesn’t mean that they are able to generalize the skills they learn into that dynamic, shifting, moving social world that they will live in.
One of the most difficult tasks for this population is to assess and interpret new people, new social events and any social situation that is changing.
The best remedy begins while students are still in school
I’ve encountered so many situations where parents or teachers have requested Speech Therapy for students in this group.
Perhaps the Speech Therapist administers “Speech and Language” assessments that do not address the social and pragmatic deficits that are evident in these students. Then there is a disagreement about what kind of support the student can qualify for.
Many Speech Therapists, teachers and counselors have limited training in addressing the social domain, yet this is precisely what these students need.
School social skills programs are not bad, but they may have limitations for meeting long-term needs as these students become adults.
Autistic adults need a long-term plan
Here’s the problem. Most of the typical social learning and support opportunities stop when the student leaves school or “ages out” of available programs.
But leaving high school, starting college, moving into the work world or developing adult relationships are exactly the times those autistic adults need more help and support to adjust to their new social environments.
But it's not just what we typically think of as social situations. It may be necessary for these individuals to communicate to a boss or supervisor in a work setting to describe their specials needs so they can perform at their best ability in that environment.
For example:
- Do they need a quiet work environment?
- Will they communicate better with other staff via email and in verbal conversations?
- Is it easier for them to have a desk in an isolated environment instead of in the middle of a lot of other people?
- Do they need a "mentor" to explain procedures and "invisible rules"?
- Can the individual communicate these needs verbally or is it better to have them written down?
Here are some ways to prepare
Pre-teach
Identify the individual’s core support group
Teach the autistic individual how to be an autistic adult
Autistic adults don’t have the built-in support system that autistic students have. Adults need to be more pro-active in accessing help. This can involve a variety actions.
- Access their support persons on a regular basis. Having check-ups and mini-conversations can prevent giant problems later.
- Learn when to disclose their autism. Sometimes this is an important step in managing a relationship or an environment. At other times it’s TMI (too much information).
- Disclosure includes the ability to accurately describe their personal experiences or individual difficulties. When? Where? How? It’s important to learn what to share and how.
- Learn how to ask for help. Sometimes help needs to come from other people outside the core support group. A boss? A supervisor? A college professor?
- Dealing with problems can include asking for assistance before a problem gets too big. It may mean explaining a difficulty and asking that person how to get some help. The right amount of transparency is important.
Adult status also means protecting yourself
The adult autistic world is also void of the built-in protections that exist in a school environment.That means autistic adults need to understand the perils. That’s unfortunate, but needed.
Recognizing false friendship or requests for money are just two examples of a long list of potential vulnerabilities. That’s why the core support group is so important. Those who are close to the autistic adult are most likely to recognize questionable situations.
Success as an autistic adult
Current statistics show that as many as 85% of college educated autistic adults are unemployed or underemployed. It’s a complicated matter, and like many issues for autism, the reasons and answers are individual.
Everything from the Rainman concept to the misunderstanding of neurodiversity to changing priorities in our educational system become pieces of the current situation.
The invisible social abilities and inabilities of this group can weaken the autistic adult’s potential for success in their post high school life opportunities.
Finding ways to provide social support and address social needs of the autistic adult is an important step to help fill the huge gap between their potential and their current level of accomplishment.
It's important to understand that the long term goals need to be integrated into the social training a little bit at a time over a long period of time. That will make them familiar and comfortable.
Autistic adults frequently need continued support to manage the social dynamics of their adult experiences.
P.S. Temple Grandin often talks about how important it is for students to have jobs. If you think about it, even elementary and middle school age students can have a job. They begin to learn about responsibility and social demands. That is the beginning of training to become an adult worker.
P.P.S. Autism Success Secrets
Autism Success Secrets is an eBook that includes stories of autistic adults and their adult experiences. Check it out to deepen your understanding.
I saw an email from you that said to plan early for autism. We did, as we got there, the programs were long gone, the staffing is practivcally non existent, the waiting lists are long and No one knows how to use visuals with a young adult. I even wrote them a manual to use and still, they try to use "neurotypical language and neurotypical auditory. My daughter needs pyschotherapy….visually, try to find anything other than bad "talk therapy" for someone on SSI and medicaid insurance. Help is only for the wealthy. So the first wave of the epidemic are already adults and there is very little for them. My daughter has no hope. MORC, CLS, all the agencies lack staff and lack training.
The previous comments were written by “Sharon Alair Bergman MA LLP mother of two Young adults with ASD.”
Unfortunately, I hear stories like this too often. The staff at adult living homes are not well trained to understand the communication needs of their clients. If those clients used visual supports when they were younger, the visual systems frequently do not follow them to their adult residential placements.
I would love to hear from more people to share their experiences.