A few months ago an old friend of mine was diagnosed with relapsing remitting multiple sclerosis. She is, obviously, now at the beginning of a long journey to fight multiple sclerosis and I’m happy to say that she seems to be doing well at this stage.
But one thing interested me enormously. She has decided not to tell her family about her multiple sclerosis. Clearly it is her choice and she has some very good reasons not to do so.
That being said it has led me on a train of thought about the subject of openness about medical conditions to family, friends and employers.
For full disclosure I should explain that I am the parent of a son with classic autism. It took at least two years from diagnosis for me to be happy (if that is the right word) about being open about his autism to anyone but very close friends and family. Now I’m very used to explaining his diagnosis in new situations to explain his behavioural challenges. That being said this did take me a long time to get used to. So I understand why people keep quiet about it.
For example we ran a poll a few months ago asking if people felt that they had been discriminated at work because of their medical condition. As of writing just over 70% of respondents believed they had been discriminated against. You can see the results of the poll here https://patienttalk.org/?p=852.
But and there is a but here. If we are silent about our and our loved ones medical conditions does that not mean we are allowing the stigma of illness both mental and physical to remain?
So really I’m opening up the floor to you.
It would be really great if you could share your thoughts on health and stigma?
a) Have you been diagnosed with a chronic condition?
b) Do you feel there is a stigma attached to that condition and if so why does it occur?
c) Are you open about that medical condition to family, friends and workmates?
d) How is it best to fight any stigmas and discrimination which may go hand in hand with health issues?
Please feel free to share your thoughts and view on the matter. Feel free to use the comments box below to answers the above questions or add any of your own.
I think at the outset I should mention that I’m not neutral on the subject of the diagnosis of autism i a young child. On 1st of September 2009 (yes I can remember without looking it up) my now six year old son was diagnosed with Autistic Spectrum Disorder or ASD.
The process of getting our son diagnosed took around six (rather traumatic) months. The reason it was so fast was two-fold. One was that a diagnosis would provide our son with access to vitally needed interventions as early as possible. The second was that the London based service providing the diagnosis felt we would accept it.
In March of 2009 we were informed by our son’s nursery that they though he had a sharp delay in speech development as well as raising concerns over his gross and fine motor skills. (No he had not been potty trained by that stage).
Once referred to an “Early Years Centre” in South London our case worker was blunt about telling us that speech delay was highly indicative of autism and that early intervention was vital. Brilliantly, for all of us, she suggested we move him from his old nursery to a band new specialist autism nursery based in a local primary school. He started there even before receiving his diagnosis. The team in this nursery (or Resource Base as it is sometimes referred to) included Occupation Therapists, Speech and Language Therapists as well as conventional teachers. Its objective was, and is, to enable autistic children to enter mainstream schooling. This our son achieved. Though the story of his misadventures in mainstream schooling is perhaps for another post!
I would like to pay tribute to the support of all those professionals who helped our son so much. By seeming him develop, though sometimes, ever so slowly was the way I came to terms with my sons diagnosis. While tough I realised there was future with a full life for him rather than the long night of pain I’d expected when I first heard the term autism in relation to our son.
So what is the point of this blog? Apart from, I suppose, the eternal struggle to get ones “thoughts in order”. Really I’d just like to ignite a conversation with fellow parents and carers of autistic people about both the process of diagnosis and how they came to terms with that diagnosis. I’d love it if you could use the comments box below to share your thoughts. You might like to think about some of the following questions?
a) What actually was your child’s diagnosis? At what age were they diagnosed?
b) What process did your child go through to get diagnosed and how long did it take?
c) How did you react to the diagnosis? How did your feelings change over time?
d) And finally what words of advice would you give to somebody who has just been warned that their child may have autism?
Thanks very much in advance.
PS I did cry on receiving the diagnosis by the way. Didn’t you?
Welcome to our latest autism blog! As a parent of a six year old boy with classic autism I felt that it would be useful to provide a short blog outlining the main signs and symptoms of autism in younger children.
I’d be very grateful if you would share this blog post with as many people as possible so they know what to look for as well as raising awareness of the challenges people on the autistic spectrum face day to day.
Everyone on the autistic spectrum is different so if you do have any concerns please contact you doctor so that your child can be screened as soon as possible. Remember the earlier the intervention the better.
Being completely non-verbal by 16 months. It has been estimated that 40% of people with autism never speak!
Not responding to their own name by the time they reach one year. Lacking big smiles and animated facial expressions by the age of six months. Your child may not respond to your smile.
Difficulty with defecation. They may have long periods of constipatio Lack of interest in games such as peekaboo. Fails to reach out to be picked up. Fails to use gestures such as waving good bye. Lack of interest in playing with others.
Obviously this is not an exhaustive list. Please feel free to use the comments boxes below to add any signs and symptoms of ASD you noticed in your child.
It is worth mentioning that some children suffer from regression. This was the case with our son so he did not start show many of these symptoms till later. Regression in speech and general social skill is a key indicator of autism. If this does happen please get in touch with a doctor as soon as possible.
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