20-20 Hindsight

It is said that hind sight is 20-20, but I’m not so sure when it comes to autism. In my 10+ year journey with my 12 year old son, I can’t say that vision has improved quite to the perfection of my optometrist standards of perfection. In fact I don’t think it has even to the level of my completely inadequate and aged vision with contact lenses or glasses. Not to say that there are not things that I would do differently with the skills, insight and experiences of the last decade. I have often thought that if I could I would teach a class for parents of newly diagnosed children with autism in order to spare them the many pains I’ve experienced and in order to help them manage the delicate balance required to care for your child while maintaining some semblance of a healthy marriage.

After receiving the news it is normal for a parent to go through a period of adjustment, so I would begin with the story of ‘We’re not in Holland’, though I would change it to Paradise, meaning, whatever your version of paradise is. In case you’re not familiar with the story – here it goes.

Your boo and you have been planning a vacation to the Bahamas for a while now. Since you have a lot of time to dream, you’ve been preparing well – researching the best resorts, buying the perfect outfits, even working out so that you will look amazing on the beaches in your newly acquired bathing suits. You’ve done your homework well and as the day approaches, you have had many conversations sharing fantasies about your anticipated vacation. So much so in fact that you’re both exhausted when you finally arrive at the airport terminal and fall fast asleep on the flight over. When you finally awake, you hear the announcement, ‘welcome to Heathrow Airport. That doesn’t sound like the right name, but you shrug it off and go on and gather your things and disembark.

When you get off the plane it’s foggy and chilly and the people around are speaking in a most familiar accent. You listen closely and you’re sure of it – it’s definitely British. So, you ask one of the flight attendants and she confirms your worst fears – you’re definitely in London. The two of you are insane with fatigue, so you immediately fly off the handle at one another, blaming each other for this fiasco and for offenses unrelated and even those yet to come. Eventually though you both come to your senses and begin to look around. For the next several hours you go through the normal stages of grief – denial, anger, sadness and finally acceptance. When you finally reach that place where you resign to the inevitable you are faced with a decision – either stay there and wallow of get off the pot and get to work to make a difference.

Sitting in Heathrow Airport looking out over the landscape, you begin to notice a few things that had escaped you earlier. It isn’t your choice of paradise, but the natives are friendly and inviting. You also remember that since you’re both a tad bit anal, you have saved all the receipts and paperwork from your preparations for your trip. After a few frantic phone calls, you are able to switch your reservations to a local bed and breakfast, along with your rental car reservation. You then find out that most of your purchases can be exchanged for suitable clothing. You then begin your vacation in earnest. Instead of lazy trips to the beach, you have trips to the country side, local castles, Buckingham and even Big Ben. You meet a group of natives who invite you out to several dinners at local taverns and embark on what will be lifelong friendships. You return to stateside with photos, videos, phone numbers and email addresses of people that will play a huge part in your lives well into the future.

The similarities of this trip to paradise and autism are pretty obvious. In the beginning it’s normal to be angry. It’s also expected to spend a little time denying that what your child has is autism and to become despondent about what is to come. After my son’s FIRST diagnosis, I was so angry that I called the offending doctor and fired him. And his receptionist. At some time however, you do need to take action, become informed, engaged and make connections that will help you for years to come. In the end what you will receive will make you a better parent, friend and human being.

After the initial shock of the diagnosis has worn off and you are now working for a common goal, it is common for many couples to forget that they are indeed a couple – hence the staggering divorce statistics for couples with a child on the spectrum. I’ve read statistics as high as 98% - doesn’t really matter because it was 100% in my son’s family and that’s the most important statistic here. But I digress.

I do think it’s important for there to be both a father and mother involved in the life of a child on the spectrum, if for only the division of labor aspect. Aside from that there are tasks that are more appropriate for the mother and others that the father are better suited for and ultimately the overall job is so large that efficiency is critical. So from the beginning of your journey you both should decide what those tasks are and divide them up accordingly.

Preservation of your marriage should also be on your never ending to-do list as well. So I would suggest a few additions to your daily planner.

1. I would strongly suggest that the two of you go away for a weekend after the diagnosis for the first of what should be an annual decompression period. You should divide the time equally between reacquainting yourselves with the couple in your family – dance, stroll, converse, flirt, smooch, dream, make love, get freaky if you want to – just pretend for a little while that it’s just the two of you. The other half should be spent planning for your re-entry into the real world – plan your time, resources and interventions, map out the next year so that you can hit the pavement running.
2. One of the first things you should do is research your respective insurance policies for limitations, coverage and procedures. This will be critical when you start signing up your child for various interventions.
3. Immediately upon your return, join a variety of on line and face to face support groups. I’ve learned more from my fellow parents than I have from all the ‘professionals’ combined – they are a valuable source of information and inspiration.
4. Recruit your family and friends for help. I wasn’t very successful on that end, but that could have been my approach and you could very well have more success. Use them for respite and also for social skills development, which is always in short supply.
5. Regular date nights – monthly, quarterly or weekly if you have the resources. Find something to do with your spouse to remind the both of you why you fell in love in the first place. Use this time for the two of you – not for autism. There will be plenty of time for autism – a life time of time, in fact.
6. If there are typically developing children involved, find a sibling support system for them. Typically children can be an enormous assistance for you and your ASD child, but it is not there job to their 24/7 in home therapist. Make sure that there is time for them to be special too.


The journey that I have been on has been a rocky one, but also one filled with touching memories and a group of friends, both on line and in person that have filled my life to the brim. I was not able to keep my marriage together, but I have gained so much from the challenges placed before me. I have become a better mother, a better friend and a better member of the community. My threshold of pain is enormous as my understanding of the human condition along with a plethora of useful information about a number of topics including special education law, childhood development, public services and even household repairs and maintenance. I hope that you will take this insight and use it to make your journey easier on everyone in your family.