szxmum

Just finished watching this on IPlayer - hard going but it did help me to see other Mums stating openly how they felt. It is good (?) to see it out in the open. The programme brought it home to me that to all intents and purposes I may as well be a single Mum going through this - dh has attended two appointments with me. All the telephone calls, letters, emails, appointments and paperwork has fallen to me. All ds's day-to-day care falls to me. Planning ds's present and future falls to me. Dh is in denial. My own Mum and brother don't want to know. The number of times I have heard from my hubbie and family - it's not that bad, there are people worse off out there (yes there are, ds will never be classed as having high level needs and that brings a whole host of problems of its own) , the professionals should sort this, social services should sort this - errr no, that'll be me. I really am on my own with this - how can my family ignore and deny this - no wonder I am emotionally exhausted, depressed and burnt out. Oops that tuned into a bit of a rant - back to the programme - it's always good to know you are not alone. Szxmumxxx

Hi jb I didn't want to read and run. I so understand and empathise with everything you have written. You are not a cr*p Mum, honestly, please believe that. I too have run myself into the ground trying to find the "magic bullet" that would cure my son. Ds has seen CAMHS, AMHS, a counsellor and two psychiatrists. Ds has never self-harmed but he has had depression, anxiety, panic attacks, phobias, suicidal thoughts, an eating disorder and OCD+++. This time last year I remember thinking that the next steps for ds would be an attempted suicide, self-harm or a psychotic break - I was beside myself with worry. I never found the magic solution but what has helped was leaving school and passing control over to him. The reduction in anxiety has improved his mental health no end. I wish you well - please keep posting, Szxmumxxx

Alexis and Sally - thank you so much for your input. I'm full of 'flu at the moment so I'm not processing myself to well at the moment I'm definitely going to come back to this when my head is clearer. This jumped out at me (even through my thick head ). Ds hears and understands spoken language perfectly well - it is the processing of the information in order to respond or enact an outcome where he struggles. If he is in a loud, noisy, busy, bright environment where his senses are overloaded he cannot communicate (listen and respond); if he is highly anxious he cannot communicate (listen and respond) - he shuts down. I've known this and we have adapted his environment accordingly. However, I have never thought about him having difficulties processing large volumes of spoken information until this last week when I observed it clearly on two seperate occasions. Yes he has been expert at disguising and mimicking. I've also learnt that this is called "compensating" and that people compensate until they run out of coping and compensating skills. Thx again guys - sorry but I'm heading back to bed but I do want to get my head around this more when I'm feeling better. Love Szxmumxxx

Thanks for your response Tally. I understand the avoidance of social contact - I see that every day in him. I understand the learnt listening behaviours - doing what people want him to do, anything for a quiet life and to be left alone to do it - I also see that all the time in him. It is the possible auditory processing difficulties that I'm interested in. When I look at how I interact with him, I keep things simple and clear. I also check, double-check and triple-check that he understands me (fwiw we interacted like this long before anyone raised the possibility of AS - I never queried it, it was just the way we learnt to communicate and I had nothing to compare it to). Teaching him to speak up when / if he doesn't understand is going to be mammoth - we've got 17 years of learnt coping strategies to deal with / unlearn, not least of which is ds expertly keeping himself out of potential situations where misunderstanding and subsequent stress / anxiety can arise or ds going into shutdown mode - I don't understand, it'll go away if I pretend it's not there. This is what makes me frustrated - ds is intelligent, achieved exam success - great for the schools league tables but... if he has verbal communication / auditory processing difficulties, they haven't been important enough / obvious enough to address and now we are in a position where his learnt coping strategies are insufficient to allow him to progress any further.

That's brilliant news Paula - well done your lad <'>

As you know ds was dx with AS at 17yrs. He achieved 10GCSEs - all traditional written paper type of exams. He failed any exam with a verbal or practical element eg his German, Design Technology and Speaking & Listening element of English His reading, writing, spelling and vocabulary skills are all excellent - hand-writing is poor due to poor fine motor skills. He can talk at length to us (me, dh and dd) about any of his special interests using highly skilled and technical vocabulary. When in company eg at doctors or recent appointment with social worker he exhibits polite listening skills - he will look at the person speaking, he can make eye contact, he nods his head and goes mmmmnnnn a lot ( has learnt this from me ). He does not join in a conversation unless asked a direct question. I am so used to ds being ds that I have never questioned his verbal processing and communication skills - well for years I have been told by professionals he is very clever but just quiet and shy, why should I have? What I have observed is this: 1. He never initiates a conversation with anyone outside of me, dh and dd. 2. In a conversation he doesn't pick up on the appropriate time to speak. He has to be asked a direct question. 3. If he can get away with not speaking at all (eg in a shop), he will - even with the family 4. He exhibits very good listening skills and "fools" a lot of people that he understands what they are saying. 5. His understanding of what he has been told in a face-to-face meeting or on the telephone seems to have a limit or a "ceiling" eg during a telephone call with his social worker he had three pieces of information to remember - he managed to relay one to me which he got partially correct but he completely forgot the other two. Now if this information had been written down, he could have read, remembered and relayed the information. I always assumed that his anxiety was in operation here and that was what interfered with his ability to participate in or recount conversations. However, I asked him today and he said that although it can make things worse he wasn't at all anxious during his phone call with the social worker so there seem to be other factors at work here. Does this sound familiar at all to anyone? Any thoughts? Thanks as ever, Szxmumxxx

Hi Susan Welcome to the boards <'> My son is also a "shutdown" type - I imagine him having the most amazing out of body experiences . He also like a lot of people with AS has many, many anxiety issues. Ditto. I have found that soooo hard. My family have in turn both completely denied my son's Asperger's and blamed it on me. Not exactly what I was looking for when I turned to them for support. Glad you posted. Take care, Szxmumxxx

Such good news. Really pleased for JP and all of you <'> .

Thanks to all who have joined in this thread. I didn't expect it to run like this. You all rock

I know these types of poems aren't for everyone but I have been thinking about this poem all last night and this morning. I could really relate to this poem, it spoke volumes to me and I've woken up this morning feeling a lot more settled and relaxed. Apologies for the upcoming overload of imagery I hung onto that plane going to Italy by my fingertips for soooo long - I exhausted myself trying to keep my son happy in school AND me in my new career. When I finally landed in Holland with a bump, I exhausted myself even further running around in a panic learning our new language, knocking on doors trying to find other people who spoke our new language, trying out new experiences to try to find a place where ds would fit. Now, I've run my self to a standstill - I'm burnt out. I've learnt the new language, I've made first contact with people who speak the new language, but there is no "ready-made" new life just waiting for us to step into. I now find that I've got to build that new life one piece at a time. I'm learning that I have to stay away from people who are flying to Italy because most do not understand why we cannot fly with them. Some are critical and judgemental telling us it can't be that bad and we are not trying hard enough to get on the plane. The remainder believe there must be "someone" who can fix things so that we can continue on the plane to Italy. So.... Here we are in Holland and here we must stay and here's to building our new life one piece at a time

Thank you Sally :crying: <'>

I'll join the bah humbug gang Xmas - I've got to get through Halloween yet. Very, very sociable dd is having a halloween party - a teenage party, ds's biggest nightmare. So dh, ds and I are going to hole up in our bedroom - wine for dh and I and a Doctor Who, Star Wars and X-Files fest for ds . Can't wait till Sunday.

Some professionals have come a long way Martin - only some. I was told by a lady psychiatrist April 2008 that Asperger's was the current fashion and that my son was just shy and that he'd grow out of it . There is still a LONG way to go IMHO - our experience has shown just how far we haven't come in terms of knowledge and acceptance.

A big thanks to everyone for all your replies. I could relate to so much of lot of what you posted Sally. I have spent so many years raising my concerns to all these different professionals only to be relieved to find out there is "nothing wrong" with ds. So to find out 17 years later that I was "right" all along has knocked the feet out from under me - there is so much guilt and grief and anger - how could I be so blind? how could I have lived in such denial? - but all I did was to trust the professionals. Loss and changes of expectations for the future - this is exactly where I am now. I have let go of my expectations of the future I expected ds to have - I have accepted this is not going to happen, grieved and let it go. I have also had to let go my own future expectations - full-time career to full-time carer is a BIG change. You are right, it is my expectations and assumptions that have to change. The future is going to be different, it doesn't mean it is going to be bad, it is however completely new and unknown and that is tough going. Thanks again everyone, Szxmumxxx

Hi all Going to try to get this down in words so please bear with me. I apologise in advance if my wording comes over as clumsy or offensive, it is not meant that way - I am just trying to communicate how traumatic the last six months have been. Having a diagnosis of Asperger's Syndrome for ds at 17 has been the most tremendous shock and is almost like a grieving process - I can see myself going through the different stages of grief: Denial This has been an enormous stage for me to work through. We have been told for years by numerous authority figures (doctors, teachers, MH professionals, the list goes on and on and on) that there was nothing "wrong" and that ds would "grow out of it". For years, I waited for ds to "grow out of it" and turn into a "normal" NT child / teenager. I feel like I have been brainwashed and it is only now that I am letting go that brainwashing and seeing things with clear eyes, from a new understanding and perspective. It is only now that I am seeing, really seeing, how lacking in social, planning, organisation and independent living skills ds really is. Yes, he is intellectually intelligent and achieved 10GCSEs but he cannot tranfer those skills into the world of work and they came at such a high cost to his mental health and well-being. Anger Anger - don't talk to me about anger. Oh yes have I been angry. After all we (and ds especially) have been through, how can they just diagnose ds because he no longer "fits" into mainstream. With hindsight he was "missed", he should have been diagnosed and supported years ago. They were the professionals, I believed them, I waited for ds to "get better" and the "problem to go away". I knew nothing about autism. How dare they just diagnose and then leave us to get on with it. Bargaining Yes - been through this stage as well. This is like - if we do this, ds will "fit" into this environment; if we try that, ds will be happy; if I phone this person, he/she will have all the answers and will be able to "fix" the "problem" Depression This comes along with exhaustion and the realisation that even if the services were out there and available, ds does not "really want" to access them. People mean pain to ds, why keep putting your hand in the fire when it hurts. There is also the realisation that your child who there was nothing "wrong" with, may not reach independence and may need long-term care. There is also the realisation that "normal" parameters of development are out the window, no-one can give you a timescale and you cannot predict what will happen, when. Acceptance I'll tell you if / when I get there. For the moment, all I can post is that my son needs a carer, he is not independent and I have accepted this is NOT going to go away. If you are still reading - thanks. Don't know if this will ring any bells with anyone but it's helped me to waffle on for a while. Szxmumxxx

Thank you all for your replies I hear what you are saying JsMum and yes that is how it "should" be - but believe me, in our area, post-16 unless you are in crisis or have severe physical and learning disabilities there is no support out there and no "need" for that support to be provided. Yes - it sucks but you are basically left to get on with it on your own. Where we are at the moment with ds is "trying things on for size" and because the options open to us are either mainstream (large groups with support) or small special needs groups we are "bombing out" time and time again. I will give ds credit though, he is in a much healthier place emotionally and has found the confidence to try special olympics, sailing for the disabled, a community business venture scheme for the disabled, a day-time walking and activity group (mainly retired people) and an explorer scouts group. But... we are failing again and again because he wants to be able to interact with small groups of people who are "like him". Our local NAS is starting a youth group for 16+ so this will be something to try once it's established next year. The good thing is this will have trained youth workers who will facilitate conversation and interaction so I'm keeping my fingers crossed. I guess the point of my post is the realisation that I have a 17 year old son with AS to care for full-time. He is now classed as a vulnerable adult and I have a responsibility to him, to care for his physical and mental well-being. I think it is the realisation that this is a chronic condition that has hit me. There is no "magic bullet" to fix this. The "normal" developmental timescale no longer applies, at 17 he is not ready for further education or employment BUT society does not provide anything else for him as he does not fit special needs groups that are out there. I am trying to wrap my brain around this, trying to accept our new reality and trying to create a new life for us but we don't fit anywhere. I hate being in the house all day, every day. During the day there are mother and tots groups, there are retirement groups and there are disabled groups none of which we fit. Ds doesn't have the confidence to try voluntary work but I am holding onto that hope for the future. I can't leave ds to his own devices in the day (we tried that) because then we end up with a depressed, suicidal teenager on our hands. Round and round in my circle I go. I need inspiration, I need a new direction for me, something to spur me on and get my brain functioning again, something to achieve, I need people contact and I'm stuck - can't see the wood for the trees. Sorry for the rant - just deperate to make contact with anyone who is stuck in the same mud, szxmumxxx Hi Sally - just read your post, thanks as always. We have tried the adult group route but the adults are just too adult if you see what I mean - maybe a route for later years. Ds just wants peer contact so I am keeping everything crossed for this new NAS youth club.

Hello again everyone, Haven't posted in a long while - I hope everyone is keeping well. Just a quick recap of our story - ds (17) was diagnosed five months ago with AS after years of struggling in mainstream secondary school and developing mental health problems. He dropped out of sixth form and was awarded medium rate DLA for care, low rate for mobility. I left my job and was awarded carer's allowance. Since my last post, I have joined two local parent support groups and have investigated every possible source of local support that is applicable to my son. To give my son credit, he has tried these options and taster sessions but cannot seem to find his niche in life. We have passed "control" over to him, encouraged him that no-one is going to force him to do anything that he does not want to - this approach is working in that his confidence to try new things is returning and we have not seen a return of the severe anxiety related mental health problems that plagued his school life. He still has a germ phobia and low-level OCD but compared to what we were coping with, this is manageable. The support groups in our area focus on high level physical disability, learning disabilities and low functioning autism. He has tried them but with the best will in the world, they are not appropriate for ds - I cannot find anyone else like him in our area. He is high functioning in that he is very intelligent but he is also highly autistic in that his social skills are minimal. I find him very childlike - his social development seems to have stalled at that of a twelve year old. He now has a social worker who is also struggling with how best to support him - she agrees that the support in our area is not appropriate for him and the only other thing on offer is a return to mainstream school or college with a support worker. This is far too early days for ds - he has only just escaped the source of his "torture" (his words) and a support worker would just be yet another reason for him to be ridiculed and made to feel different. So I feel isolated, I feel he is unique (but my head says we can't be the only family in this predicament), I feel exhausted trying to access support that is NOT out there. I know what ds needs / would like - he wants to be part of a small group (4-6) of people like him who can continue with their education - so simple but it's pink-flying pig land. It feels like, here's your diagnosis, we don't have the support you need, these are the only choices you have, sorry, you are on your own - aarrrggghhhh. The social worked has also told me that ds will not be classed as having needs that social services are required to meet, wants yes but not needs - he is too high functioning, we have adjusted and are coping well as a family, there is no crisis which warrants intervention. So we have to go into crisis and the solution they would provide then would be to take my son into care - that's really going to help us - aarrrgghhhh. I feel like I am my son's only advocate and I am trying to fix an "unfixable" situation. Does this ring bells with anyone out there? How did you move forward? Where did you start to build a new life for yourselves? How did you come to terms with it? From full-time employment, I am now at home, with no money and come with attached 17 year old son who hates social situations. Sorry if that last bit feels like self-pity but I am struggling to see my way forward in all this. Any thoughts or observations welcome, szxmumxxx

Over the last week, it feels as if we have made some big steps to accepting ds Asperger's dx. We have a healthy, happy, "different" 17 year old who is still the same loving, funny, wonderful person that he has always been . He is now happy as well because he is no longer anxious all the time :thumbs: It is sad though because our acceptance of our now "different" lives is not shared with family and friends and this has led to a combination of us withdrawing from them and them avoiding us. Our acceptance is so new and fragile that I do not want to discuss or defend our "new" lives or our son being "different". Our decisions are not up for discussion and it is what it is. Just wanted to share .

Hi Karen Just wanted to say I'd noticed you were not around - I missed seeing Bender Hope SF is kind to you all and you manage to juggle appointments and the family funeral without too many difficulties. Thinking of you <'>

I am really pleased for you <'>

Firstly, I would like to apologise if last night's rant has in any way caused offense. If it has, I really am extremely sorry. With regard to my mother, I took a long time and very calmly, carefully and clearly explained about the whole of the Autistic Spectrum without emotion or prejudice. I gave her some leaflets to read up on it. I explained where I thought ds fitted into the spectrum explaining he was neither a non-verbal, stimming autistic nor was he an autistic savant or genius. In spite of this, she has chosen to label ds with the most negative stereotype and assign him a negative, stereotypical lifestyle. My issue is not with Autism, it is with my mother and her inability to cope with what life throws at her. Unfortunately, she is not a survivor, she is one of life's victims and worse than that she wallows in it. I actually like Tally's suggestion of the cousellor., thank you Tally. She won't do it though because that would mean taking responsibility for herself and having no-one to blame for her problems but.... it'll give me a means to stop her dead when she goes off on one.

Hi Vicky Purely from a practical point of view, my instinct would be to go for the assessment now. It doesn't need to be a big drama, as Chris said in the other post, just treat it like a routine visit to the dentist. If and I stress if things take a turn for the worse, you don't want the additional stress of pushing for a dx at that point. Another couple of points to consider - 8 seems a better age for a dx than say 12, 13, 14 when he is going through the teenage years and the pack animal mentality is really noticeable. Teenagers are very unforgiving of difference in both themselves and others. Also, Autism seems to be recognised and supported more in early years and primary school. When you move into late teenage / early adult years, the knowledge and support of ASDs is noticeably lacking. HTH

Warning - this is just a personal rant, so it may be worthwhile just skipping this post Have just found out today that my Mother has been phoning my brother over the past month "despairing" and "agonising" over the fact that ds has Autism. Dearest brother, bless his heart, has been dealing with her as he felt that we had quite enough on our plates with all the recent doctors appointments and appointments at the social, etc, etc. I knew she was not "coping" with the whole Autism and disability benefits situation but I had no idea she was this bad; she's hysterical - you would think he had been given a sudden and immediate terminal illness diagnosis. To say I am furious is an understatement. Yet again, she has turned someone else's problem into an issue that she cannot cope with. This is not the first time she has done this, although she's never done it quite so spectacularly before. I am mad with myself that I told her about ds but I had hoped for some support from her, instead she has emotionally caved in and has been "traumatized" (her words) by the diagnosis and can't cope with it all. My brother has been bombarded with angst such as "What will he doooooo?" and "What's going to happen to him when his parents are too old to look after him?" and "What about his education? He can't stay at home all day". I've told my brother next time she phones to cut her dead and tell her to phone me with her problems. She will get the reply that ds is doing brilliantly, thank you very much - and he is, good for him How dare she write him off like this (and no I'm not exaggerating here, when talking to my brother she had him sitting rocking in a corner a Victorian asylum). I told you I was livid. It's not ignorance on her part (I gave her some of the simpler NAS leaflets) it's just pure selfish indulgence. Time for me to take a deep breath, have a large one of these and to re-establish the distance between my mother and me. I realised a long time ago that our relationship was FUBAR. Why should it change just because I could do with a bit of support? Sorry for the rant guys.

Happy Birthday Meg and Look after yourself Mum

This is how I understand it. As Sally says the assessments start at P Levels then go upwards 1C, 1B, 1A, 2C, 2B, 2A, 3C, 3B, 3A, 4C and so on throughout Key Stage 1, KS2 and KS3. A "typical" child is expected to progress 1-2 sub-levels per year. (Going up, the level is 1, 2, 3, 4; the sub-level is C, B, A). My children's old school used to look for overall "typical" progression of 3 sub-levels every 2 years. I think the thing to look for is over time the levels going up in the way indicated above. If you look at your dd's results, over two years she has gone up 3 sub-levels in reading, speaking and maths. Over two years, writing shows no progress starting at 1C and ending at 1C, indicating that this area needs targetting on her IEP in Year 4. You could make a note to ask for your daughters current sub-levels, say once a term. It may not be helpful to compare your dd's levels to other childrens but to instead concentrate on the fact that progress is being made in reading, speaking and maths and to express your concern that despite being on an IEP, she appears to have made no overall progress in writing in two years and how is the school going to address this in Year 4. HTH, Szxmum Edit - just read your latest post. You could ask for some writing specific targets to be added to her IEP once the SLT have assessed her. Is there any chance they can assess before the end of term?