Home > In Their Own Words > In Their Own Words – Despite the System

In Their Own Words – Despite the System

This is a blog post by Barbara MacArthur. She was diagnosed on the autism spectrum in her mid seventies and her son Howard also has autism.

My husband and I split up before our son was born.  He left the city and I had no idea of his whereabouts.  He had given up his job and later I found he had left behind a lot of debts which were nothing to do with me, but being a muggins I managed to repay them as I continued to work until a couple of weeks before the birth. I did not tell anyone that I was pregnant as I was lucky it did not show and I was afraid of losing my job.  (I had to leave a couple of weeks before the birth, as there were no special arrangements in those days).

We heard no more from Derek until one day, having taken Howard out in his pram; he pulled up in his car. I thought he wanted to look at the baby, but instead he asked me to the movies. It was the last thing I wanted to do. I said no, and he went, and that was the last I saw of him. At the time these events felt tragic, but now Howard, who is 57 and still living with me, and I smile at this. I thought Derek was strong and dominant. I thought I was weak and feminine. I see now that I did not know who I was then, and that I was the strong one.

When he was a child, Howard, was diagnosed as profoundly autistic and asthmatic.  “Just one of those things,” the doctors said. One told me he was “a write-off.” Another advised, “Stop sacrificing yourself, put him in an institution and forget him,” but having Howard adopted was an option I never considered. It seemed such a ridiculous suggestion, and I was sure I could work to support us.

I always had to work, there was no choice.  My husband never supported us and I did not know where he was. Howard was a bonny baby and weighed 28 lbs when he was 6 months old. Social security money would have been insufficient to keep him.  He always had a large appetite and his extra-large size clothes were expensive.  In 1973 my son received an official letter to say my ex-husband had died inManchester.  He had never remarried so my son was his only relative, but nothing was left except just enough to pay the burial expenses.  It was very sad because he was well educated and handsome, and had served as an officer in the Royal Artillery during the war.  Unfortunately, no widowed mother’s allowance, because I had divorced him in his absence (by newspaper advertisement) to make sure I could keep my job – married women were always the first to be made redundant.

In those days there was no allowance for one child or for a handicapped child or lone parent. I had to smile when I was refused a mortgage because my husband’s signature was needed in those days, even though he had left his job, I still had no idea where he was and I was in full-time employment.  I managed to get enough cash to buy a very old house with a dodgy roof, no bathroom and an outside toilet. It was cheap because of its condition, but it was all I could afford, and it took me ages to clean it up, get rid of the cockroaches, beetles and mice.  Somehow I managed to carry out some essential repairs myself until, over the years I saved enough to pay professionals for proper improvements and repairs.

Once, when my son was very small, I did give in to pride when I was on my uppers and applied for help from a charitable organization which had been set up to give financial and other support to unmarried mothers.  They had extended their remit and had given regular financial help to widows, widowers and single dads.  I felt so embarrassed when they turned me down flat in such an unpleasant way telling me in no uncertain terms that my it was my husband’s duty to support my child and me – as if I did not know that already!   Unfortunately, the phrase “Tell me about it!” had not yet been coined. Life is so funny – thank goodness I could see the funny side of it.

The stigma of being a divorcee with a child with learning difficulties was very strong, and we were regarded as less than second-class citizens.  Because of his hyperactivity, screams and tantrums, people thought he was a naughty child with a bad mother. In supermarkets he would go behind the counters and switch any switches on or off, or pull trays of goods to the floor. Could you blame the staff for threatening to ban us? When I took him to the beach he had to be watched all the time.  He had a habit of plonking himself on girls’ tummies when they were sunbathing. And if the bus home ever deviated from the usual route he would try to jump off while the conductor and passengers would remark: “Why don’t you control that effing boy! Women like you shouldn’t be allowed to have children. You should be sterilized.” Even doctors did not seem to understand autism and no facilities or support was available. I came to believe that what people said must be true; sometimes I used to feel that people were stepping all over me with heavy boots, and that I was beaten down into the pavement.

I am proud of my son for what he has achieved.  He will always be autistic and be considered by many as being ‘eccentric’ or a ‘bit odd’, but he is popular and has a tremendous sense of humour.  He is great company, enjoys his hobbies and is kind and affectionate. He is an extremely happy person.

A few years ago my son, Howard, and I signed on for part-time computer courses because we were both computer illiterate.  A Disability Officer at the Jobcentre referred him to the classes and I joined too, partly because I felt my son needed a ‘helper’ to cope with his learning difficulties.   I need not have worried.  We both became hooked on computers and ended up by both signing on for a full-time course at a local College in 1998.  My son became so proficient that the tutors nicknamed him ‘cyber-junkie’ and the name has stuck.  We both lost education in our youth – me at the age of just 14 because my school was destroyed by explosive incendiaries during World War Two – my son because he was refused admission to any school until he was 10 years old because he could not speak until then.  As the local Education Department put it in their letter to me “the medical officer and the educational psychologist have decided that Howard has such a disability of mind as to make him incapable of receiving education”

We completed the second year of full-time studies at college.    An assignment Howard chose to complete was about shopping on the Internet (5,000-plus words plus illustrations) and he named it ‘Window(s) Shopping’.  Despite his slight speech impediment he gave a great 20-minute presentation of the subject in front of class and tutors. It was very enjoyable for everyone.  I chose to compose an assignment about elderly people surfing the Internet and I called it ‘Cyber-Wrinklies’.

I used to be a full-time carer for three people – my elderly parents and my son.  My parents gave up their Council flat in Llanrumney and lived with my son and me for 16 years when we cared for them.  In July 1982 I was lucky enough to be able to take early retirement, as it really had become a 24-hour a day job at home. Some years ago my parents died within a month of each other – both in their 90s, in our home, leaving just enough money to cover cremation expenses. They had dreaded the thought of going to a nursing-home, they went suddenly and without pain, first my father with a heart attack and then my mother with a massive stroke.

My son and I were both thrilled to gain our Computer Science qualifications and continued our studies.  Howard graduated from University in 2003 – Computer Science. We are both very happy and have made lots of friends through our IT interests. Our life was transformed. We owe a lot to the tutors and staff at college and University and those who have set up these educational schemes.

Howard and I complement each other in that we have similar interests — computers and bookshops, for instance — yet we go in different directions. Howard loves downloading train simulators from different countries of the world on to his virtual railways. He has become hooked on music from YouTube. Howard loves Enya. I like downloading photos of tropical blue seas, palm trees and beaches. I like looking at different websites and what is going on in the world, especiallyUSpolitics. Howard is wary of the telephone, young children, noise, dogs, yet we both love heavy metal (noise) like ‘Queensof the Stone Age’, ‘Rammstein’ and Dave Grohl. Howard used to tease me because I loved all Leonard Cohen CDs, but later he became hooked too.

We are both loners – I suppose that is the autism in us.  It was not until my father was quite old that it dawned on me that he always had the classic symptoms of autism.  He had no formal education and joined the Royal Navy at the outbreak of the Great War (WW1) when he was just 16; he was well read and considered very clever, but extremely eccentric. When I thought back to my childhood I realized that I was ‘different’ but I was not diagnosed as somewhere within the autistic syndrome until I was in my mid-70s.

Now I am 85 and still Howard’s only carer, though he needs guidance more than care these days. I tell people that as I get older and less strong physically, we “prop each other up”, but that is partly to raise Howard’s self-esteem. He likes to consider himself my “nurturer”, a word he found on the web. I joke sometimes about pensioners who say they are lonely; I wish I had the chance to be lonely. I enjoy time on my own, always go to bed late and sometimes get up in the early hours and, if I am lucky, watch a late-night film drama. Tonight as I write he is in bed and I have just put out the rubbish bags. He helped earlier by emptying waste-paper baskets around the house, so it is team work. But he is often in his own world in his mind.

We lead a happy life. Coming back from town this morning we were dodging the traffic and continually laughing for no particular reason. But I worry what will happen to Howard when I die. My ex-husband died of cancer inManchester (this we learned by letter in 1973). We have our own home and Howard would want to remain here. There must be many carers in similar circumstances throughout the world who lay awake at night wondering what will happen when they are gone. Howard loves his home and is happy here; it would break his heart to be moved.

We were very lucky as we survived DESPITE the system – not because of it.  I hope eventually all of you will be lucky too.

  1. December 6, 2011 at 6:03 pm

    what an inspiring story!!! you both are awesome people.i have custody of my 4 year old autistic grandson and at age 66 worry alot about what would happen to him if i died. but i just tell people that god won’t let me die yet as i have work to do for to raise and protect my grandson.thank you for your story.
    deborah

  2. December 7, 2011 at 9:02 am

    God bless you! I know what you mean about Howard being good company. Our autistic son is 49, and does not live at home, but comes home for long visits, and he is a “comfort”…always enjoying whatever we do…no matter how simple. He loves to help in any way he can, and although he cannot carry on a conversation…is a “kindred spirit!” We understand too, your fear of what will happen to him when you are gone. It is a BIG concern. No one else but the Lord knows them like we do. Our only recourse is to put it in HIS hands, and believe that HE will provide! Carole Norman Scott…autism45.wordpress.com

  3. John Scott Holman
    December 7, 2011 at 9:12 am

    Way to go! Eloquent, courageous, gripping, poignant, humorous… Not enough adjectives for this one! So proud of you!

    Scotty

  4. Tara
    December 7, 2011 at 10:16 pm

    Wow! You are truly a pioneer paving the way for others! We have a 9 year old son with autism and know about the trials and tribulations that come with this diagnosis. We are very fortunate that now we can get some assistance thru education and therapies as well as the world being more aware of this disability. The difficulties that you overcame are inspiring. Thank you for sharing your story.

  5. December 8, 2011 at 12:57 pm

    Beautiful!

  6. Kathy
    December 8, 2011 at 4:14 pm

    A very touching story! Ty! Made me smile and cry at the same time. I have a 6 yr old Austistic son. I worry about what will happen when I die. My husband I are together, however, he isn’t as close to my husband as he is. I believe he thinks I’m his only caregiver, parent :). I love my son more than words could ever describe. So, again ty for sharing your story. God bless u and your son!!!

  7. Vanessa Baker-Simon
    December 8, 2011 at 4:18 pm

    What an amazing life journey you and your son have had – you should consider writing a book about your experiences! I have two sons on the spectrum and often worry for their future after I’m gone, so I understand what you mean. I wish nothing but the best for both of you!
    -Vanessa

  8. nadineaz
    December 29, 2011 at 10:03 pm

    AMEN!!!!! I THOUGHT I WAS ALONE… GOD BLESS…. HUNTER’S mom

  9. February 10, 2012 at 3:44 pm

    very touching, u really persevere, despite of the situation u when true.
    amerimark

  10. Kelly
    February 28, 2012 at 4:45 pm

    Dear Barbara,
    This is such a thoughtful story. Thank you for sharing it!

    I wonder if you would be willing to contribute to a special symposium issue of the Journal of Narrative Ethics on the experiences of parents of adult on the spectrum? The call is open to any parents. The information is here http://www.press.jhu.edu/journals/narrative_inquiry_in_bioethics/KD_BM_Autism_NIB-Call_2-29-12.pdf. We would of course accept a proposal after February 29th as well.

  1. No trackbacks yet.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Follow

Get every new post delivered to your Inbox.

Join 1,048 other followers

%d bloggers like this: