The present crisis and the National Autistic Society
This blog is an infomercial for my favourite autism charity - The National Autistic Society.
The present financial crisis is already affecting the voluntary sector. Charities are suffering as the recession affects people’s ability to give. In the UK at least 20 charities have lost an estimated £125 million in reserves that were placed on deposit in high interest accounts with the Icelandic banks that crashed last week.
There are some really tragic stories like a children’s hospice that lost £5 million. Some charities have lost all their reserves and may go out of business. Local authorities may have fared even worse - they had over £1 billion invested in Iceland. This money is lost. And, unless the government steps in the only way for local authorities to recoup their losses will be to raise taxes and cut services. This, of course, will impact upon the most vulnerable people in society who depend upon council services. Charities who would normally step in to fill the gap are already operating on reduced budgets.
I think the government should intervene. This week they announced a £500 billion rescue package for the banks. Another billion to help the real victims of the recession does not seem out of place. But a change in the tax laws could make things even worse for charities. The irony is that it is a measure that was introduced earlier this year to close a loophole that was being exploited by the banks and finance houses, of all people! They were employing tens of thousands of staff on rolling, temporary contracts in order to evade payment of hundreds of millions of pounds in national insurance contributions to the Treasury. The government response was to introduce a charge on the banks of 17.5% on the salaries of temporary staff. But many charities operate with a tiny full time staff and employ temporary staff to deliver projects. They too will be liable to what is effectively a payroll tax of 17.5%. Coming on top of everything else this will be enough to force some charities to close down.
The National Autistic Society
The National Autistic Society is OK for now. We have a prudent level of reserves that are securely invested and most of our staff are on contract. But our future income faces downward pressures. Local authorities who buy into NAS services will probably be operating on reduced budgets and people who donate money to support things like our helpline and training for parents of newly diagnosed children will also be feeling the pinch.
Whatever happens to the economy, we are not expecting to see a recession in autism. Millions will continue to visit the NAS website. Tens of thousands will continue to ring the help line. Thousands more will use the information and advocacy services, attend the Help! meetings etc. And hundreds of adults and children will benefit from the direct provision of a range of services by the NAS such as schools, residential homes, day centres and supported employment schemes.
Simply the best
I believe that the NAS is the best national autism organization in the world today. We provide a wealth of services. We are actively encouraging autistic people to take a leading role with seven diagnosed autistic people elected to the Council and one elected to the Board of Trustees. Parents like myself remain in the majority but we have just elected our first sibling councillor as well.
Honesty
The current campaign, that began with Make Schools Make Sense and continues with I Exist, combines honesty about the problems that autism can bring with a positive attitude towards autistic people and their ability to make a difference in their own lives if we can give them a fair chance.
The latest stage of the campaign is darker and focuses on what happens all too often when autistic people and their families are not given a fair chance. Bullying, isolation and despair are the triad of consequences if people are not given a fair chance. So building the paid up membership and stepping up our fundraising is very important right now. We want to make a difference and we need your help.
Join Us!
Anyone can join the NAS. We have national and international membership; individual and organizational membership; family membership and concessions for autistic people, students and the unemployed.
Donate!
Anyone can give money to the NAS. If you are a UK taxpayer remember to tick the the box for giftaid.
Volunteer!
Not everybody has money. But we all have time and skills. Consider donating your time or your expertise to the NAS. We need volunteers for things like our help line and our parent to parent scheme (training provided). We need skills that can make a difference at local level - expertise in fundraising, accountancy, advocacy, publicity, etc. One branch might need a web site designer. Another wants a befriender. Contact the national office if you want to help.
Thank You!
This has been an infomercial on behalf of, but not authorized by, the National Autistic Society.
Pingback by The NAS could use your help | Autism Library | October 14th, 2008
[...] recently read a rather disturbing blog post “The Present Crisis and the National Autistic Society” over at Action for [...]
Comment by AutismLibrary | October 14th, 2008
Mike–
I didn’t put it together that charities might have had a lot of money in the Iceland banks. Makes sense–higher interest rates, banks sound secure.
I’m glad to hear the NAS has reserves.
I took the liberty of posting a pointer to your post:
http://autismlibrary.org/blog/the-nas-could-use-your-help/
Comment by AndNowWhat | October 19th, 2008
My daughter is two years old. She had congestive heart failure for the first 7months of her life until her heart was surgically repaired. Two months ago I was told she has autism. I immediately seeked out centers to get her into preschool and work with teachers/pathologists/therapists. I’ve heard everything about all the biomedical research, I even tried the GFCF diet (failure), she’s had food allergy testing done (no known allergies). She will have an MRI done in two weeks.
I can’t sit here and watch my child regress and regress.
What’s my next step? Where do I go when her doctors tell me there’s nothing I can do but put her in school and hope she makes progress? A parent is supposed to help their child, in every way, especially when they can’t do it themselves. Something causes autism, and maybe it’s different for every case, but I am determined to find what caused my little girl’s.
What do I do? Where do I go?
And now what, when all my doctor can do is treat something that he/she can right a prescription for?
Comment by Mike | October 19th, 2008
And Now What?
That is a very good question and one that all too often gets an unsatisfactory answer. You are right about doctors. They often feel helpless when faced with autism because there is not pill or a treatment that will fix it. The real problem is that they communicate this helplessness to parents. No parent likes feeling helpless to meet their child’s needs so we seek a second opinion. In this, the internet age, we Google autism and find all sorts of competing claims.
Regressive autism is hard to deal with because your child appears to be developing normally and then something goes awry. The natural inclination is to look for an immediate cause that could have triggered the change. But there does not have to be an environmental cause or trigger exernal to the child.
Regressive autism is not well understood. In some cases, when autism experts look at early videos - first birthday party etc - they can sometimes detect markers for autism that we parents missed because they are not obvious to the untrained eye. But sometimes it does happen without warning. In some cases there is a temporary regression associated wih illness and the child recovers lost skills. If parents are really on the ball and start therapies straight away they may credit their intervention with “recovering” a child who was going to recover anyway.
Scientific evidence suggests that most regressive autism is based on structural abnormalities of brain development and is not going to spontaneously go away. But that does not mean the child goes into permanent decline. Imagine that you are climbing a hill and you come to a tricky bit. While you are struggling there is a landslide that carries you back down the hill. When you stop falling you are bit battered and bruised and do not want to go anywhere for a while. You may even be tempted to call it quits and head for home. Others in your party come to your aid and get you going. But there is no way you are going up that particular slope again. So you leave the normal path and look for your own way to the top.
Experience suggests that speech and language therapy, structured play therapy and occupational therapy are the best interventions for most autistic children. There are programmes like the Hanen Programme in Canada, and Early Bird in the UK that help parents to understand their child’s autism and learn the best ways to help them back up that hill. Because they do get back up. Even the most severely autistic children develop and grow and show improvements.
If I can stretch the analogy a little further, your child needs help to find her own path, not to get her back on “our” path. And in the course of her journey she may find a different hill to climb. I wasted a lot of time trying to persuade my son that he was on the wrong hill instead of helping him get to the top.
In your case it seems like your daughter is quite a fighter. It may be that her present regression is a temporary result of her medical history. But assuming that it is not, may I offer one piece of advice? If I were you I would not put my efforts into trying to answer the question, “Why?” and looking for causes. Hundreds of researchers are spending millions of dollars around the world looking for answers to that question. I think your next step is to go with the best advice you can get on finding speech and language and structured play therapy for your daughter and a training package for parents.
I am guessing that you are in the USA. Provision varies greatly. It would help to know which state you are in. But whereever you are, I would be wary of anyone who begins by claiming to be able to cure, or recover or make your child normal, especially if they ask you to hand over a barrow load of money. This is a vulnerable time for you and there are people out there who will try to exploit that.
It is more important to take the time to do the right thing than to rush in willy nilly. There are people who will tell you that there is a limited window of opportunity. If you do not act now all will be lost. This is rubbish. Children are wonderfully resilient creatures who can overcome all sorts of set backs throughout their lives. And finally, take care of yourself. You are your daughter’s strength and support. But you need support from people who are looking out for you.
Comment by isles | October 19th, 2008
ANW, I can’t add much of substance to Mike’s excellent advice, but wanted to give my encouragement. In the US, your doctor can refer you to the early intervention program for your county or school district, or you can find it and self-refer. If you’re near a university, you can see if it has an autism research center or clinic. You’re not in this alone.
I hope you won’t feel as though you’re failing if your daughter doesn’t stop showing signs of autism. She is very young and there’s no way to know what her outcome will be like. As long as she is safe and nurtured, you are doing your job.