Autism - worry and hope

I know I haven’t written in awhile . . . O.K., O.K., a very long while, but I have been doing some very heavy reflecting on my life, my son’s life, and the overwhelming task of figuring out our futures.  I have spent many an hour reading blogs and stories by autistic individuals, parents, andprofessionals.  Many are very good and informative, but the ones written by individuals affected by autism really get me thinking. 

 They are written – most, very well written – by college students on the autism spectrum.  I have to ask myself this simple question, “Where’s the communication deficit?”  Maybe I’m wrong, but I must assume these individuals are on the milder end of the spectrum (please write to me if you are reading this and are not!) I am forced to come to terms with the fact that my son, who has made great strides in his life, is most likely still lower functioning than most. I am assuming this based on the many stories written by autistic people.  It’s their ability to write so well, and to express themselves so well (emotions, ideas, etc.) that has me perplexed as to just where Matt stands on the spectrum. I have come to the conclusion that he is both high-functioning and moderately / severely autistic. There are two big emotions that have surfaced from this revelation; worry and hope.

 Worry?  Don’t all parents, especially parents of a special needs child, worry about them constantly?  Isn’t this . . . normal?  Worry has been a part of my soul since I first found out I was pregnant – it goes with parenthood like peas and carrots.  This new round of worry is a bit different.  I worry that society will see so many mildly autistic people that when they come into contact with one at the other end of the spectrum they will view him as less.  I have seen autism student support groups popping up on campuses across the country and marvel at the sheer fact that there are so many college students on the spectrum.  Don’t get me wrong – it’s great they are attending college!  But it makes me realize how far Matt has yet to go, and I am getting old.  Matt is intelligent enough for college, and he wants to be a part of campus activities (all of the fun stuff), but the class work would make him a wreck! Papers to write and tests to take are the road blocks to a college education.  Matt writes – but he’s lazy with the little words and gets phrases backward.  Exams scare him to death – sadly, if he can’t have an “A” he doesn’t want to go to class. Matt is all about perfection.  He has his strengths, like memorizing facts pertaining to a particular subject, but his ability to focus on any given subject really depends on the subject.  Astronomy, volcanism, geology and history would be an easy “A” (if it were not for the papers he would have to write), but English, art appreciation, sociology, chemistry and most other courses would perplex him, or worse yet, frustrate him to the point of tears.

 It is sinking in, ever so slowly, that Matt is very, very, autistic – to the extent that his future is in question.  Will he hold a job?  No, I don’t think so.  I know I am supposed to get him to that point– but I have come to terms with the simple fact that Matt will probably not work.  If you have suggestions of employment that meet the requirements for Matt to succeed please let me know.

The requirements for employment:(

·       Evening shift –Matt doesn’t do mornings.

·       Lots of breaks – and long ones at that.

·       No customer interactions and limited employee interactions. Matt would be frustrated constantly trying to understand other people’s emotions.  One angry person and it would be all over.

·       Non-repetitive –yep, you read that right.  Matt is past the repetitious stage.   Now it would be tedious and boring. He loves taking photographs, art, and adventures to new places.  A nice exotic job – (oh wait,that would require a college education . . . ).

·       He’ll need a mentor– a person to watch and learn from. Someone with patience, a sense of humor, understand the complexities of autism and of course, have a happy-sounding voice.

 His best chance for employment would be as a photographer for a sports team or magazine, or newspaper.  Getting a job like that requires not only a college education, but also that you know someone in the biz.  I don’t have connections ( –remember, I’m a hermit?). 

 I worry about him getting the opportunity to live on his own.  Not in an institution, not in a half-way house, not even with siblings.  He wants his own place, his own stuff and his own life.  I want what Matt wants.  Getting him there is a long road.  I believe he can – I really do – or we wouldn’t be working on everything from driving to managing money to cooking.  But my goals have changed over the years from hoping he would get a college degree to simply hoping he will have a happy life.  It’s not down-grading, not considering what he has already been able to overcome, but just facing the reality of what he is capable of.

 I admire those autistic students and wish them well.  Their voices need to be heard loud and clear because there are many autistic individuals just like Matt, those on the opposite side of the spectrum, who really need others to say the things they wish they could but can’t. The public needs to hear them and really listen and to be made aware of the children and adults who have autism and can’t communicate as well; verbal, written, or other. It’s the public that will need to learn how to communicate with the autistic individual, simple awareness is not enough.

 I read a reply to one young writer in which the comment was something like, “You’re only disabled if you think you are”.  A nice thought, but unfortunately, wrong.  There are people who are disabled that no matter how much you want them to awaken one day and be able to do the things you wish they could, - my God, Matt has tried - but he will always be disabled.  Society must accept these individuals too.  Disabled people (regardless of the disability) are different – not less. The question is, will communities come to see them that way?

 And yet, after all these days (weeks, months) of reflection and worry I still have hope.  Matt’s progress has been remarkable, to say the least.  For that I am truly thankful (and in constant awe). As a small child Matt was so very autistic that the doctors thought we should consider institutionalizing him right away.  Instead, Matt came home and he learned to break down barriers, participate in activities, communicate in speech and in writing, read, love, laugh, and grow alongside his neurotypical siblings.   He still has difficulties communicating with others and this will be a life-long challenge for him. But I have hope that Matt will realize at least one of his dreams – to live on his own. He’s working diligently toward this goal (we have a 5 year plan and will adjust as needed).

 What does this mean for others dealing with a child who is diagnosed as autistic and on the severe to moderate end of the spectrum?  It means you keep digging in and pushing forward.  It means although another child may be only mildly autistic and therefore succeeding at every goal, that your child is not less if he can not reach the same goal. After all, those that are more deeply affected have further to go and a more difficult path.  One needs to take the time to reflect on where they have been to truly measure the successes.  Small steps in the world of autism are as monumentally important as the big steps.

 So no matter which end of the autistic spectrum a person is on, there’s always hope for a better tomorrow.  I’ll probably continue to worry about what that tomorrow will be like, but that’s normal . . . it’s just a parent thing. The important part is to not lose hope along the way.