3 Areas Where Autism Awareness Matters

Working parents with Special education Special needs children including Autism ADHD Learning disabilities  Employee benefits Employee assistance Employee support Voluntary benefits. 504 Plan, IEP Program

April.  Autism Awareness Month...30 days of focus on autism spectrum disorders.  A good thing for those who need to learn more about it.  Yet for families living it every day, there's another need.  Planning.

1.  School

To effectively advocate for your child in school, understanding the diagnosis is important.  Yet what's essential is understanding your child's individual needs.

Autism Spectrum Disorders (ASD) is not one thing, but encompasses many things and each child is unique.  While there are definitely similarities in terms of areas of need, the diagnosis does not automatically correlate to their placement in school. 

Many children/teens with an autism spectrum disorder are fully included or spend part of their day in mainstream classes.  Their needs will continue to change as new skills are acquired, as they move from childhood to the teenage years, and as environments, expectations, and demands change.   And this means monitoring their growth and progress and making changes to their educational program as needed.

The focus always needs to be on today, yet planning for tomorrow and the many transition points, both small and large, means ensuring that school is building a strong foundation and that you're keeping a keen and careful eye on what's coming next.  Remember...keep the bar high. 

2.  College

If you think college isn't a possibility, think again.  More and more colleges and universities are creating programs to support students with autism spectrum disorders and many have added supports as well.  And while it may seem like a long way off, the transition requires carefully planning and preparation...starting now.

If higher education, whether community college or a four-year university, may be the goal, their transition plan must address it.   And this means IEP goals that go far beyond:  "Megan will research post-secondary education options" or "Tim will visit two colleges".   Preparation for college means direct instruction of skills including self-advocacy and executive function skills (e.g. organization, time management), not only in their transition plan, but in measurable IEP goals as well.

If colleges are already being explored, plan to evaluate each school's disability services department.  Some families disclose their child's disability before acceptance, while others wait until acceptance and after the college decision has been made.  No matter the path, you need to access all available information to determine the right "fit" for your child.

3.  Work

The need for parents to think about and plan for the transition from school to employment and to evaluate a child's interests and abilities must begin early - i.e. middle school. 

Many companies, such as EY & Microsoft, are recruiting employees with ASD, and smaller businesses are specifically hiring young adults with these needs and strengths.  School must be teaching the skills needed for independence, and employment is one of the key areas.

Finally...

Parents already know that one day, perhaps sooner than expected, school will end and so will the services and supports received.  Whether college is the next step or securing a job, both areas have different rules and expectations, requiring skills that go beyond getting a B on a spelling test or doing well on a science project.

Preparation is key.  And we all have a part to play -- families, schools, clinicians, agencies, colleges, employers, and more.

Children with autism spectrum disorders become adults.  They become part of the fabric of our world with astonishing strengths and gifts to share.  And they also become adults with needs that continue to require support.

April may be Autism Awareness Month, but we'll really be integrating those with autism spectrum disorders into every aspect of life when the awareness is ongoing.  That's when we'll know that it no longer requires 30 days of focus and attention.

 

Hey Buddy...Have $1.4 Million To Spare?

I don't know about you, but few people who exist in my sphere have this kind of money.  Even those who have been working and saving for years come up way short.  So if someone told you that you needed $1.4 million dollars -- or access to it, what would you say?  And what if you had no option because this was the amount of money it would take to raise your autistic child over his or her lifetime?  Suddenly this number rings at a deafening pitch. Numbers, particularly those that few of us have ever had looking back at us from our check register, are hard to grasp but let's take a quick look anyway -- $1.4 million if the child does not have an intellectual disability; take it to $2.3 million if he or she does.  This is according to preliminary research released in March by AutismSpeaks, which added one other mind-numbing number -- that the annual costs of autism are -- wait for it -- $126 billion.   That's a big number.

But how about this?   Research released today takes these numbers and converts them into words ... words that many people may be able to more easily understand...and act upon.  The costs to parents who are raising a child with autism are *higher* than for parents raising a child with diabetes.   Diabetes.  One of the key health concerns facing children and adults today.  An issue grabbing the attention of doctors, dieticians, educators, and policy makers.  And a focus of most workplace health initiatives and health fairs.  Everyone wants to reduce the number of children and adults struggling with diabetes.  The volume is definitely growing louder and people are starting to take notice and mobilize.

Take notice.  Precisely what's needed in order for employers to recognize that while diabetes is a major issue, so too is autism.  The financial, family, and health toll it takes on working parents to raise a 5-year-old with autism or a 12-year-old with Asperger's Syndrome is enormous.  Even taking the workplace issues of productivity and absenteeism off the table for a minute, the amount of money, time, and resources needed to help their children with autism reach their capabilities brings working parents to bankruptcy.  Forces families to forgo vacations.  Makes second cars a non-option.  Requires more than the occasional holiday visit with grandparents.  And forces many to leave the workforce even with these out-of-orbit costs.

While today's news did not come as a shock, it did raise the need -- okay, my need -- to continue to increase the volume about the toll autism takes on working parents.   I was talking to someone earlier today about employers providing pet insurance to employees -- a great "perk" for sure.  Yet I said that providing supports to working parents who are raising children with autism is not a perk -- it's a necessity.  Isn't the work-life discussion one that revolves around bringing some sanity and balance to otherwise out-of-control life situations?

Few people today are not touched by autism in some way.   This translates into working parents -- many boomers also caring for aging parents -- feeling a level of pressure and responsibility unmatched by many.  The needs continue to emerge yet the resources and supports are difficult if not impossible to access.  Employers play a pivotal role in this equation and it starts by telling these employees, "We get it", just as they do in supporting a range of other issues also impacting their workforce.   But there's one difference.  Parenting a child with autism directly affects more than the employee alone...it affects the child and the family unit as well.  Talk about stress.

Next time you hear something about autism -- and the media is all over the issue -- stop for a minute and think, "So what would I do if someone told me it would take $1.4 million to raise my child into adulthood."  You'd be doing what millions of other parents are already doing -- struggling and hoping someone will listen and help.