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Asperger Experts? - Carers UK Forum

Asperger Experts?

For issues specific to autism / Asperger Syndrome.
Hi Everyone,

I'm very new to this as up until now it has been thought that my son has been affected by psychosis rather than autism and he has consequently been treated by the Early Intervention in Psychosis team for the past 3 1/2 years. Now they are saying that our son is actually much more likely to have Asperger's and that this is why none of the anti-psychotics worked and why their approach hasn't helped us significantly. Our son continues to insist that he's OK and refuses to have any assesments and, even if he did, there is no ongoing autism service we could use for advice and guidance. So I'm not sure where to turn and am simply reading as much as I can. He does seem to have a lot of features of Asperger's although it's also clear that, due to nothing being picked up on at an earlier age, it took what the consultant now refers to as a transient psychotic episode for us to see the magnitude of the problem. He's now 21.

One site I came across is https://www.aspergerexperts.com/ - an American site that has a fair amount of free information and which runs courses/webinars too. There's also a Facebook group for parents/carers, although this has a monthly fee. Does any one have any experience of this site or know anyone who has been helped?

I also noticed a MOOC at the University of Derby which to me sounds promising. Really I feel I need to know much much more as my son is so hard to reach and I'm afraid that without acting things won't improve for us. He's basically extremely withdrawn, uncommunicative, no friends, unmotivated, avoidant, very mucky and confined to one room (his choice - he's in there on his laptop all day) and a very different lad from when he went from school to college around 5 years ago and everything fell apart. I just don't know how to build him up again, or even if this is possible so am desperate to find resources.

Are there any other courses, books or other resources?
Oh Treehugger, you are probably not going to want to hear this, and I am by no means an expert but what follows is my own personal experience of a family member who sounds very similar to your son.
At 14 he started refusing school and refusing help like home tutoring. He (I'll call him N) started having very strange thoughts and fixations. Then followed diagnoses veering from psychosis to Asbergers and back again, then to both at the same time.
Now N is 30 and living in supported accomodation. N remains uncommunicative, fixed in his opinions, unable to mix socially, stays in his room and glued to technology.
Over the years every attempt from professionals and/ or family has failed to effect much long term change . He has had time in specialist residential care, 2 periods in mental hospitals, various medications, lived alone and communally, yet nothing changes in him.
BUT In his world, he is content, he has what he wants (namely food, technology and somewhere to live, in that order) he doesnt want to socialise in the way most if us do, and happily avoids most people and most situations.
His family has had to come to accept that what we, and 'normal society' expect and want for him is not what he wants for himself. For example we miss him dreadfully at family celebrations but know he would be unhappy and stressed if he did attend.
All of which is a long winded way of saying I will try to find out for you what his parents found helped them most, and believe me they have tried, and learned and fought for help for over 15 years now. They are away currently so it may take a while.

I know there are others on this forum who have more direct experience than I have and I hope they will be along soon to suggest resources for you

My heart goes out to you
Many thanks. I feel I have a lot of thinking and reading to do. I also feel quite afraid as I really don't know what to expect for the future now. I look back trying to figure out what has been happening over the years but until very lately my impression had been that things were actually going smoothly until around the age of 15/16. Now I am weighing things up more deeply, I'm not so sure. I had hoped that the early intervention team would be able to help - they seemed so sure and so positive about recovery - but now this seems to have been taken away and i don't know what's possible any more. The change of diagnostic label seems to mean that help is being withdrawn.
Tree hugger. My heart goes out to you. Can't be any help unfortunately but sending you a hug ((( )))
Thanks sunnydisposition for those links.
I found the first one particularly interesting as so much about Aspergers/autism focusses on children and there is little out there regarding adults or late teens who are diagnosed late, or if at all.

Treehugger, when you do find useful resources please share with us too. I still hope for N, he's a lovely boy at heart

Hikikomori (ひきこもり or 引き籠もり Hikikomori?, literally "pulling inward, being confined", i.e., "acute social withdrawal") is a Japanese term to refer to the phenomenon of reclusive adolescents or adults who withdraw from social life, often seeking extreme degrees of isolation and confinement. The term hikikomori refers to both the sociological phenomenon in general and the people belonging to this societal group. Hikikomori have been described as recluses, loners, or "modern-day hermits.

According to government figures released in 2010, there are 700,000 individuals living as hikikomori with an average age of 31.[7] Still, the numbers vary widely between experts. Among these are the hikikomori that are now in their 40s and have spent 20 years in isolation, this group is generally referred to as the "first-generation hikikomori," and there is concern about their reintegration into society in what is known as "the 2030 Problem," when they are in their 60s and their parents begin to die.[7] Additionally, the government estimates that 1.55 million people are on the verge of becoming hikikomori.[7] Psychologist Tamaki Saitō, who first coined the phrase, originally estimated that there may be over one million hikikomori in Japan, or approximately 1% of the total Japanese population. However, considering that hikikomori adolescents are hidden away and their parents are often reluctant to talk about the problem, it is extremely difficult to gauge the number accurately.[8]

While hikikomori is mostly a Japanese phenomenon, cases have been found in the United States, Morocco, Oman, Spain, Italy, South Korea and France.[5][9] Recent research using the same standardized definition of hikikomori has found evidence of it existing in other countries as wide-ranging as the United States and India.[1]

Hypotheses on cause[edit]
Autism spectrum and other disorders[edit]
Hikikomori is similar to the social withdrawal exhibited by some people with autism spectrum disorders, a group of disorders that include Asperger syndrome, PDD-NOS and "classic" autism. This has led some psychiatrists to suggest that hikikomori may be affected by autism spectrum disorders and other disorders that affect social integration, but that their disorders are altered from their typical Western presentation because of the social and cultural pressures unique to Japan.[10] Suwa & Hara (2007) discovered that 5 of 27 cases of hikikomori had a high-functioning pervasive developmental disorder (HPDD), and 12 more had other disorders or mental diseases (6 cases of personality disorders, 3 cases of obsessive-compulsive disorder, 2 cases of depression, 1 case of slight mental retardation). The researchers used a vignette to illustrate the difference between primary hikikomori (without any obvious mental disorder) and hikikomori with HPDD or other disorder; furthermore, 10 out of 27 had primary hikikomori.[11]

According to Michael Zielenziger's book, Shutting out the Sun: How Japan Created its Own Lost Generation, the syndrome is more closely related to posttraumatic stress disorder. The author claimed that the hikikomori interviewed for the book had discovered independent thinking and a sense of self that the current Japanese environment could not accommodate.

The syndrome also closely parallels the terms avoidant personality disorder, schizoid personality disorder or social anxiety disorder (also known as "social phobia").
Hi Treehugger,

Have you contacted The Autistic Society yet? If not, they would be my first port of call. They've been around for donkeys' years and would be able to give you good information and discuss what to do next. My son's autistic and I have found over the years an awful lot of what's on offer about autism isn't very reliable or conclusively proven. A lot of people seem to completely overlook sensory issues as well, which are often a major factor in difficulties dealing with the outside world. If you haven't spoken to them yet I'd give them a call and offload on to one of their helpline volunteers and take it from there.

Hello again & thank you for all your thoughts on this. I will follow up all the links and mull things over for a while. My son doesn't seem to be at risk, which was a concern previously, so it seems I have a bit of time on my hands to decide on how best to approach things and support him. One concern is that I am helping him to stay as he is but there are few ways in when someone won't communicate. We're in a stalemate situation.

I've come across hikikomori before as I came across an article and can remember thinking that both of my sons had that. One, however, has gone on to university and seems to be moving on generally (albeit as more of an introvert) whilst the other seems to have broken down completely. I don't know what has made the difference.

I've not contacted the Autistic Society yet but am on their forums, casting about for information in some desperation. I'll give them a call this coming week though. Plus probably join the ASperger Experts FB group too, which I'll report back on here. As with psychosis, though, most of the information I can find is heavily weighted towards the descriptive side, with little on how to help. Problems like withdrawal, lack of motivation and poor self care are referred to, of course, but then no advice or guidance given. CBT or psychotherapy are mentioned but as if there's some kind of hidden assumption that individuals will engage - a huge oversight I think when non engagement seems to be embedded in the very nature of the core problem.

Overall I suspect I'm looking for something that isn't there but I feel as though there's no alternative but to keep trying.