Worried about my son

Hi, first a little backstory (sorry if this is long and rambling). I've spent years trying to get a diagnosis for my son, every school, senco and a private paediatrician have said he's got Asd (aspergers), chronic insomnia and depression, but we're getting no help (largely because he's academically well above average and mostly towing the line at school). My GP says they can only refers to cahms, which happened 2 years ago. After losing paperwork many times and generally Procrastinating, our cahms officer agrees he is on the spectrum and is almost ready to discuss him at a review after which we will have a 1 year waiting time. Meanwhile my son self harms, says no one understands him and he doesn't want to live anymore- he also gets in violent rages with me and pulls up the hand break, throws doors open etc when I'm driving. I'm so worried about him and every appointment gives him sympathy but no help. We've paid out about 1500 on private appointments and therapists and still no real help. Has anyone got any advice. I feel like emotionally I'm loosing him.

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  • Sorry to hear what you are going through, it can be so difficult. I have found this charity very helpful, you could try contacting them.

    actionforaspergers.org/

  • This sounds very similar to what we went through, with everyone making me think I was just a nervous new mother, and I knew differently. I don't know where you live, but I had called the pediatrician once, and he could hear my son raging in the background. It was the pediatrician who calls 911, and had my son "evaluated," in a locked psych ward for a week. The first thing they noticed was that he could "control" his outbursts, if no one was watching. In the end (I think I went through everything you mentioned), they diagnosed him as ADD and put him on medication that completely turned him around (just before entering high school) and he went on to be a different person and graduated with a 4-year-degree in college.

    However, looking back (and I've asked several people about this), he was definately on the ASD spectrum. He had low test scores in all areas (such as a 3 out of 100) on reading comprehension, but he got a 98 in "social studies." By age 8, if you showed him a blank map of the United States, he could accurately identify all the states and their capitols, and somehow they tested him as having a "conversational level" of someone age 36. (He wasn't verbal till 5).

    Stick to your convictions, and advocate for him. When I was diagnosed at 57, the first thing I was told was that chronic insomnia (50+ years) is almost always due to ADHD. Once they treated that (for me), everything else calmed down. If you have to, start writing for help to everyone you know, and contact your local Autism Society for help and resources. They are always extremely helpful.

  • Hello. Where do you live? My husband has Aspergers and I had a problem getting diagnosed even though I worked in the system, with people who have LD, Autism and mental health problems. My foster son also had had problems all his life and was sent to a special residential school when he had a psychotic episode when he was around 11. I also do food sensitivity tests. It transpired that my husband's mood changes and hyperactivity were mostly down to things he ate or smelled, for example, he loved bananas and cheese. I always bought these on Fridays and we always had terrible weekends with arguments and upsetting events. Later on we also found that his behaviour changed totally when he was exposed to a certain deodorant spray. He was threatening to throw himself off a cross channel ferry after it was sprayed in the carriage we were travelling in across France. He ate a punnet of strawberries one day and it blew his brain. He argued with me all evening until about 1 am telling me I was the worst wife ever but the next morning he woke saying that the day before it felt as though his brain was being attacked by an axe. So some of the extremes could be to do with food or chemical reactions. You mention extremes in the car? What do you clean your car with or do you have something hanging in the car, one of those perfume things? Do you put on perfume before you go out, so that in a confined space it is noticeable? Or does he clean his teeth just before you leave to go in the car? Many people react to mint or peppermint or chemicals in certain toothpaste causing a reaction. These tests are very simple to do and take a few seconds per item. I am living in South Wales but I did visit Berkshire now and again and it would be good to meet you, if our paths could cross somewhere! My email address is miriam_melody2000@yahoo.com if you'd like to contact me in a different way. Things can change, life can improve, there is an answer. For years I knew there was an answer, somewhere! Eventually the answer came and saved our marriage. Remember that some of the best minds in the world had Aspergers! Take courage!

  • Wow! Thank you all for your support. We live in Kent and our GP will only go through cahms (NHs children's mental health centre) and will not accept the private diagnosis we have so we are just waiting and coping alone. I will see if aspergers society will help though. That's a good idea. And 'myhealthneeds' the allergy thing is a great idea. I will read through your answer a few more times as so many useful hints. Thanks

  • How old is he? It is so wearing, isn't it. Going to all the appointments, and no one helps. I have a son with Aspergers, I can't say getting the diagnosis led to help either. My son is definitely lower in mood when he has not eaten. Does yours have a restricted diet? Can you get his serum ferritin tested, ie his iron status?

    Mine currently has such a bad circadian rhythm disorder he is one week nocturnal out of two. He also wants to die. He has Restless Leg Syndrome, which links to ADHD and low iron.

    your son is doing v well to be coping at school. You are doing v well to survive each day.

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