Visit to Autism/Asperger's Association of New England, AANE

A visit to the AANE,
located west of Boston, came about because of a meeting with them that took place over nearly a year ago....actually because of our Dinner with Dads program.  Many of our dads (and quite a few mom's who came to the Ladies Night) met Ron Fournier at our Dinner with Dads.  Ron struck a chord with many of us because of his book, entitled, "Love that Boy, What Two Presidents, Eight road Trips AND My Son Taught Me About a Parent's Expectations".  

When the AANE folks decided that they wanted to start a program for fathers, Ron encouraged them to reach out to Hill Top and learn how we got things started.  In talking with them, I became so excited about what they were attempting that I felt I wanted to be there for their first evening program.  I even invited some HTPS dads to join me on this field trip to Boston to join in the festivities.  It was an inspirational evening, to say the least.

So that brings us to this post.

I reached out to AANE about their programs and specifically what they could share with me about how we might program for post-high school graduates.

First, here is some info about AANE: 
The website is www.aane.org.  Located in Watertown, MA they were first founded in 1996 by parents and professionals with a primary mission "to assist individuals affected by AS and Aspergers".  While they work with folks of all ages, my main interest was in their adult services programs.

There are many groups for adults with an emphasis on support and social experiences.  They have a long list of monthly meetings and events that occur in seven different locations throughout New England. (What?....How did that get in here?)

February's calendar alone includes activities such as: Pizza/Game Night, Women's Support Group, Finding a Career, Forms Clinic, Gender Identity, Father's Group, Mom's Night Out and Failure to Launch Webinar.  They also have regular programs on sexuality, partners on the spectrum, spanish speaking resources,and support for grandparents with family on the spectrum.  There are also departments called LifeMAP Coaching, Neurodiverse Couples Coaching and Housing Consultations.

I met with Dania Jekel, AANE Executive Director and Ilia Walsh who heads up their Adult Services.  The time they gave me was twice what we had originally scheduled. Their philosophy at AANE is to center on being focused not on individual differences but on the likes/interests of each adult client and build an individual plan for each client based on those interests.  They don't feel that one single program for adults will work or fit for everyone because each adult is an individual with different needs and at a different place in their life with different life experiences and different emotional baggage.  It is why they have developed so many different programs.

We also talked about supportive living environments for spectrum adults.  Their programs allow for different types of housing for different individuals.  Spectrum adults often want their own efficiency apartment instead of sharing an apartment with others to allow for more personal time.  They have found that cleaning services should be provided and often find that someone to support with food, banking and counseling services can be helpful with a number of their clients. Counseling for spectrum adults has been helpful for many of their clients covering issues around anxiety and OCD, gender identity, all kinds of issues focused on sexulaity, eating disorders, and depression at times.  While they don't have it, they liked the idea of a shared dining program as a way to address healthy eating and making social connections.

One of the most interesting parts of the conversation was their opinion that the 20's are often the most difficult time in the life of someone on the spectrum.  As they continued to talk, it made perfect sense.  They feel that the lack of a structured program following high school graduation, the desire to be "normal", the expectation to "get out there and be successful at college" or "get a job" all tend to raise anxiety.  The 20's folks fight the idea of being parented any longer, want desperately to be independent, and freeze when presented with the idea of disclosing their diagnosis to others.  Dania and Ilia are finding that the 20's are a time for maturing, for evolving, for being comfortable with who they are and where they are going to be as adults. They use a phrase, "Ten Years for Transition" because it can be a frustrating time for everyone concerned as the student is no longer a minor and there is a true balancing act between pushing enough or too much. It is their opinion that it is the 30's when their clients start to show true independence.

Then they spoke about how important support for parents of high school graduates is because they need to talk about this move to independence.  A community for them is truly important. (The same thing that Dr. Browning said in my earlier conversation with him.)  Dania says that parents ask all the time, "Do I push or not push?  How much can I push without negatively affecting the relationship with my child?"

In terms of careers, only about 25% of their clients are technologically savvy enough to find employment in the field of tech or tech related areas.  So, they have worked hard to develop relationships with other employment areas to help with the employment process.  They were emphatic that the most important factor for these adults to become independent is self-awareness and willingness to build a strategy for success around who they are and what they want.  Dania said, "the more that they know about themselves and accept themselves for who they are the better they will be in life....which brings up the issue of self-disclosure again." They find that self-disclosure is a considerable issue with employers who are willing to work with employees with differences when they know that they exist.  However, without knowing, employers tend to lack patience and understanding that is needed for them to be supportive and often the spectrum employees just lose their jobs.

Lastly, these folks came back around the the mission and shared that AANE works hard on all fronts to give the message that their clients are not broken, that they help them see their strengths, and that they really can do a better job when they utilize the expertise of others around them.  In a parent meeting recently, a participating parent talked about how that the end of 12th grade for one who is not aware of personal strengths and challenges "isn't just graduating, but if we as parents aren't careful, it is merely graduating to the couch."

Thank you to Dania and Ilia for so much of their valuable time.  I followed this meeting up with a phone call with Dania a week later but will share that in a later post.

And, to our parents who have a graduate of Hill Top or are soon to have one, don't get discouraged.  What this means is that the village you have already created to support and encourage you and your Hill Top student....will just keep on going for a few more years after graduation.