As an autistic grandmother myself I was appalled to have this brought to my attention.

Aspire are supposed to be a charitable support group for people, like me, with ASDs in Ireland.

They fail dismally. Like far too many of these organisations around the planet, their behaviour does not meet their aims. Instead of using their many grants and donations for the genuine support of the people they purport to help they seem to regard them as a gravy-train for the organisers and staff.

When one poor lady writes a private email to complain about their treatment, instead of apologising and promising to improve they send a legal team in to silence her.

Well, guess what, Aspire? Epic fail.Had you addressed her concerns the matter would have gone no further. This woman is far too discrete to repeat the whole of her email (and has excised the bits that your legal terriers complained about) but the fact that you have threatened her is now spread, via the internet, world-wide.

You have made yourselves into prize eejits.

Here is part of her blogpost with her edited email:

I thought I would share with you those portions of a specific private email that have NOT been the subject of demands for apology and retraction under threat of action for defamation. As the solicitor in question made those demands based on the opinion that private email already constituted “publication” there can be no problem with reproducing the parts he raised no objection to here:

***

… Whatever we do, whatever we achieve, Asperger Syndrome is the limit of our world and our expectations…have you ever thought about how that feels? Stupid question, of course you haven’t. Why would you? You couldn’t care less as long as you are milking OUR problem, and OUR disability for what you want.

Still, I cannot help wondering how you would feel being treated as you treat us?

It’s a no-brainer, you would be appalled…

..Downside is, while it is childsplay to push me over the edge …, it will not be so easy to explain when it is done, think about that.

Because of people like you, exploiting people like me, under the guise of “supporting”, I don’t have a life anyway…and nor do those dearest to me…so what do I have to lose?

Nothing, any way I add it up.

I wish I could even find enough wriggle room to say ”I hope you can sleep at night” but frankly, you would have to have a conscience for that to be a problem, wouldn’t you?

In an ideal word you’d have a “road to Damascus” experience and cry out “Oh my God! What have I done??” but, in the real world, frankly, that is not, exactly, an option, is it?

***

I think that speaks for itself.
I am genuinely terrified of these people and have been for a long time. But I am far more afraid of my own conscience.

In the UK, a 14 year-old girl died within two hours of her vaccination with Cervarix (the UK doesn’t use Gardasil). Natalie Morton had been ‘poorly’ for some time and was under investigation by her GP for a ‘mysterious illness’, according to her step-father. It turned out she was killed by a malignant tumour in her chest. The tumour had invaded her heart and lungs. Poor girl.

Pharmaceutical companies are in the business of saving lives, as are the government departments charged with overseeing and licensing their products. When it is occasionally shown that their medications are not as safe in the wider population as they seemed in clinical trials, they are withdrawn. It simply cannot be predicted that a particular treatment will be safe and/or effective in everybody as we are all individuals. I myself have had horrible side-effects from medications prescribed for me that were intended to help. But, of course, at the time my underlying problems were undiagnosed and therefore could not have been taken into account. Now I am no longer allowed to take certain classes of medications because of the risk of death or severe injury and have to take others to avoid those risks.

Back in the mid-eighties, at the height of the then current ‘vaccines cause disorders’ controversy, there was a Whooping Cough epidemic, due to the low take-up of vaccines. My eldest son did not have full immunity (presumably his immune system is like mine – I don’t have full immunity either, and we have both been fully vaccinated and had the disease several times). My second eldest boy had started having obvious ‘petit mal’ seizures after he had been vaccinated, which worsened in frequency after the second. He wasn’t given the third (final) shot. Knowing what the disease was like, even in a mild form, I was sure that the effects were worse than anything a vaccine could do.  I was unable to persuade my GP to vaccinate my daughter against it. She caught it. I was terrified she would die. Her brother and I had a comparatively mild case, but she had no protection whatever and was seriously sick. I defy any mother to nurse her baby through an illness that has her burning with fever, coughing violently and then struggling for breath, and come to the conclusion that vaccines are dreadful. Luckily, she survived. Other babies weren’t so lucky that year. By the time my twins were born, the medical concensus was that my view was right, and that there was no reputable study that proved any link whatever between vaccines and the disorders they were rumoured to cause. Both were fully vaccinated.

Modern parents in First World countries are lucky. They have grown up in an era of high vaccination rates and effective anti-biotics. They have simply no idea what it is like to watch child after child die horribly from preventable diseases like their great-great-grandmothers did. But if they think that gives them the luxury of deciding not to vaccinate, they are mistaken. Apart from smallpox, the diseases haven’t been extinguished. They are all around, constantly attacking us and being repelled by our primed immune systems. Any of us could be carrying any one of them at the moment and not know it, until we come into contact with an unvaccinated person who will contract it and possibly die. My grandmother died of TB. My father nearly died and was only saved by massive doses of a then brand-new antibiotic. I was vaccinated against TB as a baby. I like vaccines. They save lives in the best possible way – by largely preventing the disease in the first place. There will, hopefully, be even more vaccines against other diseases in the future. Who knows, there might one day be one against all cancers and I might be the last female in my family to have to have a total hysterectomy to avoid dying from it. My great aunts and my aunt all died before it was detected in them.

I have no problem reconciling my faith and science. To me there is no dichotomy. And I do not mean that I have reduced my God to the ‘God of the Gaps’ either. Rather, that my personal understanding of the spiritual side of life means that I see it as all-pervasive. I see no reason for conflict and have known many scientists who were happy in their own faith. Science isn’t out to disprove the existence of any spiritual dimension and sensible religion doesn’t try to argue against the discoveries of science, for they are our species’ best descriptions of reality.

I am pretty well aware of the minor differences between the various Christian denominations in Europe. However, the brand of ‘Christianity’ in the US that I see arguing against stuff like evolution utterly baffles me. I do not recognise it at all. It seems to be fanatical and devoid of most (or all) of the common sense, love of others and tolerance preached by Jesus. I can see that there would be no room for science in the head of someone who believed in the literal truth of the bible, and no scientist could possibly embrace that kind of ‘Christianity’ because it requires a suspension of critical faculties essential to scientific study.

The scientific mind certainly cannot accomodate ancient stories if someone insists that those stories have to be literally true. Or what, exactly? Does someone who believes in the literal truth of folk tales honestly think, if they are proved to be not literally true, that the One about Whom they were written cannot be true either? Is their ‘God of the Bible’ only the God of the Bible, to them? What a small and fragile God they must think Him. No wonder they get so angry.

Is it because they can see no joy in doing the work, get no encouragement and no praise when a task is completed?

It isn’t hard to encourage someone. It is really quite easy to congratulate them. So why don’t we do it more often?

It is a shame that we don’t all have an internal cheerleader to encourage and congratulate us; more often than not, it is killed in infancy by adults who don’t want us getting ‘too big for our boots’.

How often have you seen an excited kiddie, thrilled with something they have achieved, sent away disappointed (or even ashamed) by an adult who complains about them ‘blowing their own trumpet’? How much would it actually have hurt the adult to say in an excited and enthusiastic tone, “Did you really? All by yourself? Well done!” Would that child have gone on to have a monumental ego? I think not.

However, by depriving people of praise when they have worked hard they are more likely to go on to have mental health problems.

It feels good to be praised. Funnily enough, it also feels good to praise.

I’d like to increase the sum total of human happiness and praise someone for a job well done, or effort expended, as often as the opportunity arises.

I hate it with a passion.

The last time my parents moved house, I remember vividly. I was five.

Forty-six years ago.

I left that house over sixteen years later because I got married. Since then, the longest I have stayed in one house has been twelve years. In total, I have moved house twelve times in less than thirty years.

And changed country twice.

When we moved into mobile homes on our site in Ireland I really thought that the next move would be our last and our easiest – just a few yards across to our house, once it was built. How was I to know we would get there via Australia?

Hmmph!

Why do I seem to count my life in Thursdays?

It is such a non-day.

Nothing to watch on telly. No meetings are ever scheduled for Thursday. I have no Thursday hobbies.

But I find myself suddenly thinking, every week, “How come it’s Thursday again already?”

as if it has crept up on me…

My second son, when he was a toddler, posed me this question:

“Mummy, why is it still Thursday?”

Anyone who can answer this will gain my undying gratitude.

I really hope that I don’t break the internet.

I don’t think grannies are supposed to play with it.