A doctor writes:

"As the mother of a special needs child, I can relate to everything you've written about. My son is 12 years old and is autistic. I am a doctor and probably in the worst possible position to have a special needs child. Everybody thinks you know all about the condition already, and that you know exactly what to do and where to get help... Well, actually, I don't. When in medical school, you learn about all the different medical conditions in a very clinical way - and it's totally different when it comes in your own front door. People - and relatives are the worst for this-  assume that because you're highly educated, you'll be able to cope well... Wrong again. I'm no better - and probably a hell of a lot worse  - at coping with my son's condition than anybody else.

"I have to make reference to the Holland/Italy story. Frankly, what a crock of nonsense. I don't deny that Holland has its attractions,  but trying to fob people off with a half-baked fairy story is insulting to most adults' intelligence. If it helps you, fine  - but I honestly feel I'm being patronised by these analogous stories. A year ago my husband was made redundant due to budget cutbacks (allegedly). He was recommended to read a book called "Who Stole my cheese?" which deals with such things i.e. a job being suddenly taken away form you. It's clever, but after reading it I felt totally patronised and certainly neither myself or my beloved felt any better.

Anyway I must apologise for my angry tone. It's mainly because I am very angry. While my son is a beautiful child (most autistics are) he is a handful. He is a solid child, not the biggest 12 year old you'll meet but immensely strong ,and physically I cannot manage him any more. We are getting some home support and some respite from the Brothers of Charity that run the service he is with - but like everyone else we could do with more. DON'T expect relatives to help. They run a mile and then keep going. The only reason my husband and myself get out at all is that my elder son is 14 and is mad to do some babysitting in order to augment his pocket money!

It's also very difficult for my other two children, the aforementioned 14 year old, and my 9 year old daughter. My autistic son has a mental age of approx 3 years and like any 3 year old he is like a dog with a bone if he wants something. He goes into their bedrooms and wrecks them as he looks for whatever is in his mind that he wants. He wanders away from the house if he gets a notion and since we are a hundred yards or so from a very busy main road, I live in dread of his going out on it, as he has NO sense of danger whatsoever. He climbs up trees and tries to walk out to the end of the branch.. ok when you're on a low branch,  but not when you're 25-30 foot up.

Last May I read the story of the lady with the autistic 12 year old who jumped off the bridge over the Humber. I was in floods of tears while reading it. I can empathise with her. You worry about what is going to happen your child, where is he going to end up, are they going to mind him PROPERLY, will terrible abuses be inflicted on him? Here in Ireland stories of dreadful abuse being inflicted on children unable to defend themselves, special needs and not, are coming out in the media constantly at the moment and all these add to the fears for the future. Even if we do find a good place for him what happens when we die, will his siblings even visit... will he even notice whether they do or don't?

Any way, I must finish up, stop crying, wash my face and go back to work."

Comments

[Mandy]

I can relate so much to the comments quoted here. I also have a child with autism she is 11 years old and is like a hyperactive toddler. I am currently having to fight for her to go to an out of town school because the local special needs comp would put her in a class with up to 15 other children of various ages, including much older teenage boys. Some of her obsessive behaviours mean that she is very vulnerable and I am certainly not happy about this. But I have no choice but to fight the authorities because they assume that this one size fits all special needs comp is fine for her. It isn't. It angers me so much that we have to fight for things which parents of mainstream children take for granted, choice in schooling, choice in healthcare, choice in childcare etc. We are given rights by law for our children, but we have to still fight for those rights to be given.

In the meantime, we have enough on our plates loving and managing these children who are life-enriching, but also damn hard work. It's no wonder that parents end up on anti depressants and suffering ill health, I certainly find it nigh on impossible to take care of myself on top of my caring role.

[Miranda March]

I have a 16 year old son who I believe to be on the ASD spectrum, although I have not been able to gain a full diagnosis. Gr Ormond St hospital consider that my son has social and communication difficulties and had a complex presentation at the hospital, although despite his problems, we are no nearer in gaining any help or support. I am having to apply for a 2nd referral because I am certain that my son is on the ASD spectrum.
A teacher at a local special school also is of the same opinion. The on-going stress and complexities in relationships, friendships, coping on a day to day basis, placing stress on the wider family and school difficulties and neglect cannot be stressed highly enough.
My son is non-cooperative at all times, messages do not get through, he is anti-social, has social and communication difficulties, echolalia, difficulty with abstract concepts, cannot understand/follow instructions,has an extremely poor memory and cannot organise himself. His concentration is non-existent apart from when he is skateboarding. The skateboarding is obsessional. He is extremely difficult to manage and the only advice I have had is from his ex-school who suggested that I needed parenting classes! (this was almost certainly due to the fact they did not want to take any responsibility for Jonah's difficulties). He was up to 5 years below his chronological age when last tested.
I am at my wits end. He is now a very angry, violent and aggressive teenager (almost adult) and I am very fearful for his future. I/we need some help/support and am wondering where we can go to access this. Jonah needs to have some help with behaviour and acting in social settings. He has got into several scrapes already and can put people's backs up unintentionally. He is very verbal and becoming increasingly difficult to manage. His father is unwell with a heart complaint and has already had a triple by-pass and 2 heart attacks. The stress placed on our family and family life has been immense. I am now having to seek help for myself due to severe depression which has emanated from all that has gone on over the years and not being able to secure help for Jonah, and am finding life very, very hard. I don't know where to turn.
If anyone can suggest something, I would be so grateful.

Kind regards, Miranda, Hertfordshire

[Sue]

I have a 14 Year old daughter with Asperger's disorder. She was finally diagnosed at 13. We live in Australia and have received no support from anyone and it has cost us a fortune. We love our daughter and would do anything for you but I would like to question why this condition is not taken seriously by the Government (it would seem to the same case in most countries). Her condition has put an awful strain on our family and at times I have wondered if we can all stay together.

We have seen some light at the end of the tunnel with Jess taking a vitamin/mineral supplement as well as Omega 3 tablets. In 4 weeks, no meltdowns, an absolute record.

[Debbie]

I am not a writer so I will keep this short. I have a 15yr old son on the spectrum and also a daughter who is 13. She has severe autism, severe learning difficulties and behavioural problems too. She is non verbal and mentally around two. We are constantly doing battle with the terrible twos. She is also very violent and aggresive, teenage hormones are not helping. We get no help at all yet I am constantly reminded by my NHS dentist that I am costing the NHS money !!!

I beg to differ. In fact I save the NHS a hell of alot of money - I have been left, with no training, and dumped with a few leaflets to help me through the whole of my daughter's life. I fear and have nightmares about my daughter's future. What will happen to her? No one cares now - who is going to care then? I have to give my daughter 24/7 care. Her school are not coping and they just pass the buck to me. Neither their staff nor their back-up can cope but they expect me to - why? Because I'm mum.

I love my kids with all my heart and soul but just once in a while would like someone to listen to me and offer a helping hand. There are no play schemes etc for my kids. We are prisoners of society. No one wants to accept us and no one wants to listen. Unlike the doctor who wrote to you I am all cried out, and I am now just a very, very angry person, and bitter at the way we've been treated.