How Come Nobody Told Me At Diagnosis About Aspergers and Grown Up Children!

One of my favorite expressions over the last two weeks has been “How come nobody told me about this when my son was first diagnosed with Aspergers?”  Nobody told me when he was first diagnosed  just what this roller coaster would be like; how challenging the journey would be; or even if there would be a light at the end of the tunnel.  But now I see there is, there really truly is!

Last Monday, our 28 year old son, living with Asperger’s, flew to Canada to live for a year.  Two years ago, he met a lovely girl on-line, and they developed a relationship based – believe it or not – on their mutual love of video gaming. They are both avid gamers and over the past two years often played video games via X-box and Skype – she in Canada and he here in Australia.canada_day_graphics_03

Before you ask – Yes! we have actually met her.  The first time we did, they were not a couple,  just simply good friends.  She flew to Australia for a holiday and to attend a Youtube convention.  They kept talking and a year later met up again on a holiday in the US,  attending another Youtube convention. On 1 July last year they decided to announce on Facebook that they were ‘in a relationship’.  Why July 1?  Well that is Canada Day – my son figured if he was going to have to remember the date of their ‘relationship anniversary’ – he had better pick a day he could remember 🙂

So when he returned to Australia he applied for a working visa  and on 4 June this year, two days before his 28th Birthday, he flew to Canada and his new life. It has been an interesting journey, both to watch and to witness.  Over the last few weeks however, his stress and anxiety levels  have sometimes reached danger heights. It was if autism and aspergers, which often go into a sort of quiet hiatus – suddenly intensfied and we were all walking on eggshells around him.  He couldn’t describe why he was feeling so anxious either, so I just put it down to nerves.

However, it was the Saturday night preceeding the trip, where the emotion and anxiety finally spilled over. He had organised a farewell party for all his friends,with 12 of them arriving for his send off.  Over the last six months, he has been a part of a gaming group, and every fortnight they all got together to play video games.  After that they would head to the movies, or to bowling or somewhere very ‘neuro-typical’.

The day of his farewell party was actually the first time we had met many of his friends, and we were very impressed. They were all polite, funny, quirky people who were  enjoying each others company.  I couldn’t help thinking about how long this process had taken, where he had finally found a great group of friends who all had so much in common.

After he said goodbye to them all, he walked into the house and cried.  It was then he admitted “I am not sure I am making the right decision, I really like these people and we have such a good time together and just when I found them all, I am leaving”, the enormity of the trip suddenly becoming very real.

All of a sudden the weeks preceding his departure started to make sense . He had been like a cat on a hot tin roof.  Edgy, not sleeping, challenging everybody about anything, including any news items in the media.   His stress levels were the highest I had seen seen in many years, and so it wasn’t just nerves, it was also him struggling with the concept of ‘making a wrong decision!

For many adults living with aspergers, I have heard this comment quite often.  The stage between idea and reality, is often filled with thoughts of doubt, that seem to be heightened when living on the autism spectrum. The grey area between making the decision and it coming to fruition can be challenging.

When our son was little, and whenever his stress levels became high – he would cry. It was the warning sign that he had reached crisis point.  That Saturday night, whilst sitting on the floor of his room we both cried, I suddenly realised how the stress and anxiety for a young person living with Asperger’s could still present itself.  For him it was feeling he had not experienced before.  Torn between the love of a girl and realising that in order to fulfil his desire to have that, he would be leaving behind many good friends which had taken years for him to find.  Because he had not felt those feelings before, he found the words difficult to describe -he kept putting it down to being nervous.  But once we were able to articulate the feelings, describe them, normalize them and analyse them – he was fine – nervous still, but the anxiety went away.

Over the last few months I have been reliving much of our Asperger’s journey including the day of his diagnosis.  I wrote about that DavidsGift Cover Pic Cream bkgrd 2aday in my book David’s Gift – Asperger’s Life and Love . On the one hand I was so relieved to  finally have a diagnosis, but on the other hand devastated because this was for life….and it was not something he would ‘grow out of’.

I have come to realise  that is not quite 100% true.  While the diagnosis maybe for life – the strategies you introduce and the skills your child develops over the years, are the strategies and skill set they use to learn to function in a neuro-typical world.   All those strategies, skills, therapies and frustrations that sometimes don’t seem to make a  lot of sense, eventually do transform and one day, when you  least expect it, suddenly everything comes together.  In spite of the few bumps along the way!

So here we are now – 17 years after that initial diagnosis. They didn’t tell me when he was first diagnosed with Aspergers just what this roller coaster would be like; how challenging the journey would be; or even if there would be a light at the end of the tunnel.  But now I see there is, there really truly is!

PS –  A lot of people have asked me how he is?  Well,  he and his girlfriend are madly in love; they have been ‘fixing up their little ‘zombie’ pad, as they call it –  they recently bought new posters for the wall – one of Dr. Who and the other a Star Wars poster; they have found a ‘retro-gaming’ bar they love; have attended a live music concert featuring bands playing music from various video games…. and this morning he told me that he is going for a job interview next week – as a Video Game Tester!  

….My daughter said “I am amazed at how he always lands on his feet!”… and it is true, he actually does land on his feet, even if sometimes it feels as if the parachute may not open in time! I just wish somebody had told me all this at diagnosis.  But then again, if they had, I probably would never have believed them.

For more on our story, read all about our journey and the book that started it all here


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Sally Thibault
Speaker, Author, Aspergers Parenting Specialist
Click here to book Sally as a Speaker 


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