Jump to content

bazz

Members
  • Content Count

    4
  • Joined

  • Last visited

About bazz

  • Rank
    Norfolk Broads
  1. Well, what is it that makes me an Aspie (person with Aspergers)? I have a hell of a time if somebody does things different than I do, especially when it is at my home. I used to think this is because I think things through and do them on a logical way, but now I think it is more likely because of Aspergers. I have a hard time watching someones eyes. I got used to it, but when I'm tired it gets harder to do (some people are easy and some are very hard work to watch their eyes). I used to believe every word exactly as it was said when I was younger. white lies and other people's motives When I found out that people almost always do kind of comforting lies, I began to be very critical on everything someone says and try to find out what his or her intentions might be. I need to think about peoples motives instead of just feeling them, but then I got quite fast in that so nowadays almost nobody notices. I had to learn to smile, frown and make the face that would meet my feelings when I was a teenager. I found out at that time that my face did not look as lifely as anyone elses face (especially of cause actresses faces) seemed to look like and so I sat down in front of a mirror and tried out what looks I liked and what not. interests and personal space I try to know everything about a subject I'm interested in. Over the years this have been: cats, dogs, wool/spinning/weaving, pottery, doing water color paintings, doing portraits (very hard thing to watch a face for such a long time), gardening/plants, biology (especially genetics), kids (when I started to have some), healthy food and a lot more I forgot over the years. Whatever I'm interested in, starts to become an obsession after a short while. I got so much things now, I had to drop a lot of them because I don't have enough time. I feel uncomfortable in any crowd (that is more than at least 6 people). And I have the biggest personal space of all people I know, that means when talking to someone else it's me who walks backwards to keep distance. Put me in a single-prison There are times that I think it would be okay if one put me in single-prison, giving me enough to eat, all the books I want and a computer with internet. But then I remember I would miss my garden-plant-obsession thing, so this is no option. I put a lot of time and work into being able to act normal only to be accepted when I was a child and teenager, but never was. I am very sensible to smell and it makes me sick going to a perfumery or smelling someones aftershave/perfume too intense (well, I can smell it even when nobody else does, so it's me and not only people who put on too much of that stuff), on the other hand I love smelling flowers and natural odours (no, not the ones sweating men produce) like gras and the woods after rain and so on. I'm also sensible to certain sounds. reprinted from the stories by adults on the spectrum at http://www.autism-help.org
  2. Parents typically go through a wide range of emotions when their child has been given a diagnosis of Asperger's syndrome or Autism. Grief and loss are common emotions as parents invariably picture wonderful things for their child's future. The diagnosis will entail readjusting these expectations and this can be a painful process. Along with this may well be fears for the future. As developmental disorders, it is hard to predict what levels of independence and life skills an autistic child will develop by adulthood. Dealing with the diagnosis Some parents may experience denial of the diagnosis. This can be a normal reaction to major shock and denying the diagnosis may be a protective mechanism until the shock has worn off. On the other hand, there can be relief at finding a reason for delays in a child's development, and finding practical strategies to help their child. The most common reactions reported by parents include devastation, helplessness, surprise or relief that inexplicable behavior is finally understood (National Autistic Society 2006c). Everyone reacts to major life events in different ways, and parents should be understanding toward each other if their reactions differ widely. Sometimes grandparents can make the situation difficult for parents, by not accepting the diagnosis. They may feel that more discipline is needed, or even that it is bad parenting. There are clear steps that can help parents deal with a diagnosis: ? Begin steps for assessment and early intervention ? Make sure the professional who made the diagnosis fully explains your options ? Learn about behavior strategies and strategies to support communication ? Join a parents support group. Impact on the family system The shock of an Autism or Asperger's syndrome diagnosis can be likened to throwing a pebble into a pond. The ripples most affect the immediate family, then extended family, friends, school and the community. Siblings, grandparents and others who are close to the family will all have their different reactions. Provide everyone with information on the disorder and encourage discussion on the issue. Getting informed about Autism or Asperger's syndrome Parents will understandably want to learn as much information as possible and look for appropriate therapies and interventions to help their child. There are many good books available and this site provides a comprehensive overview of the many issues surrounding Autistic Spectrum Disorders. It can be very daunting at first but the overall picture will fall into place eventually. It is completely understandable that parents would hope for a simple cause of Autistic Spectrum Disorders, and a simple cure. However, these are life long disorders - genetic component has been established as a cause, and some claim that environmental causes might also be involved, leading to much debate about diets and alternative therapies. Be open to new approaches but also have a healthy skepticism in your research. Look for evidence-based treatments where possible. Remember that early intervention can make a big difference in minimizing delays in a child's development. support groups Join your local Autism association and see if they have a parents support group. A support group can be a great source of support, encouragement, information and inspiration. If there isn't one in your area, you can speak to your Autism association about starting one yourself. Even an informal morning tea every month can create a support group that takes minimal effort to run. If no groups exist in your area, explore the on line forums and blogs that many parents visit. early intervention for your child following diagnosis Autism and Asperger's syndrome lead to delays in your child's development. Early interventions seek to minimize these delays to achieve as normal a life as possible for your child. Early intervention is important to prevent your child dropping further behind in reaching developmental milestones. Talk with your Autism association about options in your area. Parents can feel they are letting their child down if they can't afford the most expensive therapies available, but remember the most important therapy usually takes place in your home. Learn as much as you can about the interventions you adopt, and apply these principles in the home environment. This consistency along with therapies outside the home will benefit your child greatly. Mainstream therapies To date, the most rigorously tested and effective interventions are the behavioral ones such as: ? Applied Behavior Analysis ? Lovaas program ? Positive Behavior Support. Developmental interventions are proving effective as more research is conducted. Examples of these include: ? Developmental Social-Pragmatic model ? Responsive Teaching ? Floor Time ? Relationship Development Intervention. Sensory Integration Therapy is a proven intervention for the problems with sensory problems with touch, smell, hearing, taste and sight experienced by children on the autistic spectrum. Occupational therapists provide this therapy, which also assists with difficulties in movement, coordination and sensing where one's body is in a given space. Alternative and biomedical therapies Unfortunately, research moves slowly and there are other interventions that haven't been rigorously tested yet. Some parents may claim a 'miracle cure' from a special diet that does nothing for another autistic child. However, anecdotal evidence suggests that a fair number of parents see varying degrees of improvement in their child with the removal of artificial flavor and coloring, preservatives, casein (dairy-free), gluten (wheat-free) or salicylates (found in certain fruits) from diet. In addition, some parents find that certain herbs, vitamins or yeasts have helped. To date, most of these approaches lack the rigorous research that would qualify them as evidence-based treatments. For more information, see Biomedical Intervention on the Early intervention page. Maintain a health skepticism toward all INTERVENTIONS! Some people claim miraculous benefits, in good faith or otherwise, for interventions that are not yet rigorously tested. But some of these therapies may help, even if it is only addressing a comorbid issue alongside Autism or Asperger's syndrome. Remember that each child has a diverse range of issues from being on the autistic spectrum and will respond to various interventions in various ways. There are also less reputable services providing miracle cures on the Internet that seek to exploit every parents desire to see their child develop as normally as possible. Some children improve substantially even without therapy, so it is very difficult to know when therapy has definitely made the difference. In other cases, a therapy may work so well for one child it will appear as if it has 'cured' the Autism, but may only have moderate to little effect for most other children. Rigorous testing gets around this by looking at large groups of children under a therapy, and have a 'control group' of children not under the therapy. Unfortunately this approach has not been applied to many new therapies so far. When looking at interventions, try not to be swayed by unsubstantiated claims on websites or glossy brochures. You will also be looking for the following in this order: ? Rigorous controlled double blind trials to establish an intervention as evidence-based ? General agreement on effectiveness from Autism associations, researchers, journals etc. ? Anecdotal evidence from wide range of parents who have used the therapy. Remember the overwhelming majority of parents eventually conclude that the best thing for their child is focusing on love, patience, hard work and finding a suitable mix of therapies instead of the 'miracle cure'. finances, interventions and autism Parents want the bets for their children, and some therapies are very expensive. Check with your nearest Autism association about government subsidies, financial aid, therapists who provide 'sliding scales' of fees for low-income families and so on. Joining a support group is great way to learn from other parents' experiences about cost-effective interventions. If you are unable to afford therapies, or have none in your region, see the Do-it-yourself early intervention fact sheet. Consider making lifestyle changes to pay for interventions. Choosing a simpler lifestyle will not only free up money for your child's future but will probably be better for the environment as well. These personal sacrifices are difficult for many parents of newly diagnosed children to overcome. Early intervention therapies take sacrifice, but the hard work will be worth it in the long run. The glass is half full Actively choose to see the positive side of things. Concentrating on the negative aspects of Autism or Asperger's will only discourage you and your child. Look out for and celebrate all signs of progress and reaching milestones. Concentrate on the things your child does well and let them know about it. Encourage your therapists, teachers and family. A positive attitude is infectious and others will want to help your child and your family even more. Provide them, with the most up-to-date information possible. Attitude counts for so much - choose to never give up. Ignore stigma and unhelpful comments Challenging behaviors from your child in public places can be difficult to handle. A tantrum in a library can lead to all sorts of looks that take little interpretation - "What a hopeless parent", "He just doesn't get enough discipline", "What a horrible child, she must have lousy parents" and so forth. Unfortunately you may have to develop a tough skins and realize there are people who make superficial judgments of others. The problem is their lack of understanding - don't accept their unwarranted criticism and feel anger toward your child. maintaining your lifestyle and pacing yourselves Being a parent of a child with Autism or Asperger's can be similar to running a marathon - you need to pace yourself for the long term. Don't burn yourself out trying to 'cure' your child in the first year. Most early intervention therapies take time before results are seen. For your own good, and therefore that of your child, you will need to maintain your friendships, hobbies, interests and relationships. Where necessary, use respite care, babysitting and extended family to get time to yourselves and enjoy life. There is a natural tendency to focus everything on your child but you will need to achieve a balance in order to provide them with consistent love and support over the years. This fact sheet is taken from the hundreds available at http://www.autism-help.org
  3. I have discovered a new spectrum - should I be true to myself and speak the truth as I see it, or play the diplomat and tip toe around people's feelings? I've been working on this for some years, wondering whether to be myself or adapt and save my relationship before it was too late. I was diagnosed with Asperger's in my twenties, partly due to a lack of public awareness, and also because I am a pretty mild case. It helped me understand why I had a philosophy of life?s too short to put up with the BS - in other words, I should speak my mind so that all concerned understand exactly what I thought. If I don't like a situation, I am the only one who can take responsibility for my own happiness and make changes. Unfortunately, I was not aware of how asserting my views was negatively affecting the relationship with my partner, friends and family. I thought everyone was just over sensitive and approaching life in an illogical way. As in previous relationships, my boyfriend was naturally concerned and attentive to my needs, but then I started to feel as if he was distancing himself from me. His job requires him to spend a lot of time away from home, and consequently I was often left alone to brood on my thoughts. I've always felt that to live my life with integrity I needed to be honest, even if it were confronting or resulted in making me unpopular. And it did - I often had trouble hanging on to friendships, but figured if they can't handle the truth, then they aren't real friends. My boyfriend really opened up, and claimed I was rude and how everything I discussed was about me, me, me. He said I was the distant one, and he was only reacting to me. This was all news to me, I'd only been in one serious relationship before and that person had taken off without even saying goodbye. Being analytical (something that runs in Asperger's!), I'd read up on the need for communication so always stated my ideas clearly and succinctly to him. It was difficult to see at first, but I could understand how my no-nonsense communication style was causing more grief than good, even though rationally this is an efficient way to communicate. I was increasingly becoming angry and frustrated with my partner?s lack of understanding and respect for my views, while he was claiming the same about me. If I acted with integrity, my partner would probably leave. If I put on a Pollyanna smile, and pretended everything was okay, I felt unhappy. Was there something in between? And if so, how could I integrate both my integrity and needing to play the diplomat into the ?new me?? To cut a long story short, I saw a neuropsychologist for a while and finally got a clear picture of what my boyfriend was feeling. I admitted how ashamed I felt not having had a clue as to how my insensitive words had hurt him. But I did explain that this didn't mean my 'Asperger's identity' was necessarily at fault. We just had a big chasm between us and some compromise was needed if we were going to continue our relationship. I told him how I was determined to work on a more polite but still truthful style of communication. I let him know that I was 100% committed to improving our relationship and I would not give up just because some things seemed too hard. I went on to explain that there are two things to consider: there is the Asperger's syndrome, and there is me. I am not the syndrome, and it is not me. I am still a person, and I have a condition called Asperger's syndrome. If someone with cancer were feeling depressed and sometimes snapped at loved ones on down days, people around her would not demand that she ?get over it!? nor tell her ?you have no idea how selfish you are!? The cancer is not the person, it is a condition the patient has. Just because people can?t see my Asperger's doesn't mean they should be any less understanding. If I were in a wheelchair and had tubes coming out of me, people would treat me with more tolerance and understanding. I knew my partner had been listening not just with his ears, but with his heart. The look of love and compassion in his eyes affirmed my decision to take the step of changing my ways. He even agreed that my honesty was a positive trait, when expressed with tact. living with Asperger's is like running a marathon My big challenge is to continue being aware of my words and their impact on others. I need to be vigilant in my conversational style. This will take time. Like training for a marathon, one can only take one step at a time; but know that every training run is one more brick you are laying down on the road to achieving your goals. Difficult as this will be, I am determined to incorporate these new skills into my speech. Furthermore, making honest statements should not only include the things we don't like, but also the things we do. Praise and compliments go a long way towards healing old wounds and creating good relationships. Of course there are heaps of other issues we face, but I'll leave those for another story. A personal story from Autism Fact Sheets
  4. My family has been on the Aspergers journey for 12 years now, and one thing that had surprised was me was the lack of comprehensive resources for parents in the first year or two after diagnosis. I am a social worker and now that I am semi-retired, decided to spend some time developing the sort of website that would have helped us so much in the early days - see http://www.autism-help.org/index.htm There are over 250 fact sheets and personal stories covering the main issues we parents face, so I hope this may be of help. I'd welcome any stories from parents who would like to help others with their hard-won experience. These can be emailed to me at barrykmorris@hotmail.com regards Barry Morris
×
×
  • Create New...