DON'T KNOW WHERE TO TURN AND SCARED !!

Hi everyone and thankyou very much for all your advice it's really appreciated . I went to the doc's the other day about myself and she diagnosed me with Fybromalgia instead of the first diagnosis of Chronic Fatigue Syndrome . I also mentioned about my son and she suggested that i go private outof the county so i feel alot better with her suggesting it and she didn't even put it on my notes that we had talked about my son , which is a bonus. Were going to look into it and decide which is the best one to go to . Coogybear i would love you to email with the information you have , it would be great thankyou .

Thanks again everyone , it's true what they say , "a problem shared is a problem halved".

Hi Mhairi

I noticed in your last post that you mentioned his Uncle run a Computer shop.

Could he talk to your Son about the Surge protecter and maybe show him on the Tv that its ok and won't damage anything? Perhaps his uncle could advise on a back up battery system instead of a Generator, Laptops have batteries in them that would allow for it to carry on a few hours after any potential power cut.

When is your Son most happy? What things does he enjoy most? Does he largely prefer to be on his own? 

I'll try not to go on but i left School at Yr 9 not able to cope, as a result have no Gcse's. I've been working solidly the last 10 years until now where stressgot to a point where i was unable to leave my room and where every little noise i heard made me jump 'Ithought this isn't normal'. My Mam mentioned something to me that struck a cord and since then have been to the my Gp and trying to explain how i felt he asked me a few questions  and suggested i may have ASD. Since then i have done a lot of research and i'm waiting for a referal next month, it explained so much, my previous jobs where i was so angry at other staff atthere poor work ethics and efficiant systems and proceedures that i'd developed and how furious i was if the wernt followed or if i was questioned.

The point i'm trying to make is i have only just realised that something is wrong or atleast accepted it at 29 i've been ignorant and been no doubt difficult for my Mam and Sister.

Your Son may not be able to tell you how he feels 'I know i wouldn't at that age i just wanted to be on my own with my Lego and Mechano'. 

What seems to make him happy? Try and increase it in a controlled and organised mannor.

What make him Sad and Anxious try and decrease this.

Try and involve him in organising routines, try to find new interests in adition to the PC, you mentioned he likes Drama at School could classed be an option? If he is able to reseach and prepare before he would go, get himself a system in his mind? YouTube offers any type of reviews' ways/systems and advice.

Keep us updated and hope that atleast some of this may help.

Kind reguards Steven..

Hi Mhairi

Just trying to think back to my own school days and what gave me comfort, I've not read any responses since your post so excuse me if i've repeted anything.

But it seems obvious that your sons PC means alot to him and maybe the only way your son can make sence of things. Excuse me if this sounds abit unreasonable but i'm now 29 and can empithise with alot of what you write of your son.

I have a large tool collection and maintenance and repair of buildings and equipment is my interest as well as imporving efficaincy.

Is it worth investing in a surge protector, a wireless dongle and a cheap geanerator with out door extention that he could put out of his bedroom window?

In the event of a surge the hard-drive would be protected, the internet going down they would be a wireless option' EE do a good 4G wireless option these days that is good value for money and quick for wireless'and in the event of a power cut a generator stored in the shed could provide power. This may sound extreme but it adresses the anxity issues that youve described.

If you tasked finding these items at a suitable and low cost to your son, he may find the re-search process and the anxity issues be addressed and feel better.

Just an idea and would cost a few hundred but would have been the sort of thing that would have helped me at that age.

Best of luck and kind reguards Steven.

Please excuse the spelling i couldn't be bothered to goback to correct it.. 

Hello vickimacca,

  Forgive the delay in my response, I wasn't sure if you wanted further info to help you, as you weren't specific in your reply.

I'm not familiar with SS or the ongoing issues that many have reported about false accusations, so I asked a friend who's more knowledgable about these things and she sent me this note and links.

I hope these links and her words will be of some help in getting support and helping you with your issues. Hopefully, knowing you are not alone is also of some comfort.

Take Care and best of luck 

Firstly, contact Jan Loxley-Blount of Parents Protecting Children https://www.facebook.com/PPPC.UK?fref=pb&hc_location=profile_browser because Jan has been through this MSBP issue and supports many people who have been falsely accused by social services, she has a lot of good contacts including professional ones.  It may also lead to some good links for the diagnostic side.

About this problem with the diagnosis, common and CAMHS do this all too often.  

Tell her to read this: https://planetautismblog.wordpress.com/2014/07/20/not-enough-traits-for-a-diagnosis/ and this http://evolutian.wix.com/planetautism#!your-autism-rights/c1t44 and thishttps://planetautismblog.wordpress.com/2014/04/29/females-with-autism-the-tragedy-of-ignorance/ she has every right to ask for a second opinion.  If necessary out of area, it must be independent, she can put a case to the funding panel if necessary.  If she has the money she could go private, she can search for a psychologist via the British Psychological Society http://www.bps.org.uk/psychology-public/find-psychologist/find-psychologist but she may have a battle with the NHS to recognise it even though they are supposed to recognise private diagnoses according to their own rules.  It would at least give more weight to her belief that her children are autistic.  The problem she likely faces is that they are high-functioning and are masking their difficulties to a degree in school and they release the behaviour at home. She should read this: http://www.autism.org.uk/living-with-autism/understanding-behaviour/behaviour-common-questions-answered/different-behaviour-between-school-and-home.aspx

She should also consider approaching her local Parent Partnership for advice as they may have some signposting that could help.

I totally understand why she is scared of social services.  It's not how it should be but sadly that is how it often is.

Hello Mhairi,

Please don't apologise for venting here, I've done it many times and many have come forward with excellent suggestions to help me and my boys.

For us, CAMH's didn't identify my sons ASD. That was down to the private therapist we asked to see him, after CAMH's initial support and limited diagnosis.

I must admit, when our therapist mentioned Autism, I immediately rebuffed the suggestion. My perfect child could not possibly be Autistic. Even after his diagnosis through the consultant, I struggled with it. It's to my shame, that I struggled in denial for many years, but also with an innate sense that some of the strategies I'd employed for my life, would help my boys. If I'd been born a boy or done some research, I may also have seen some of the gender differences between boys and girls that would have made life so much easier for us all in the long run. I digress. (Water under the bridge, I guess.) My regret, my fault.

In my experience, those with ASD rarely get 'better' to a time scale or agenda. Trust and confidence in any therapist takes time for those on the spectrum to accomplish, so by the last session, that's normally only just established. CBT can be helpful for some, but it hasn't been for me. Psycotherapuetic Counselling has been the best, but a best fit for anyone on the spectrum Is about a good, personal,trusting fit with your therapist and an understanding of ASD. Choose carefully and if it does't work, don't give up, as I did. Move on and find what does work.

From what you say, It doesn't seem like your son has had a chance to come to terms fully with his diagnosis and also has issues, talking with others on the spectrum, which is sad. That's ok though. It's his life, his time and he needs to do that at his speed, but a good therapist can help him on that journey, when he's ready.

It's not all bad, I promise!

Do you have a local Autism hub for support, where he could perhaps meet others on the spectrum who he might feel better able to talk to?

Although, CAHM's may dismiss your son quickly, I reccommend you get outside support now, if you feel able. From what you say about your area, If they do drop him, someone your son is begining to get to know can be waiting in the wings to better support him and the sudden abandonment he may feel; (and that many restricted to timed, support, feel) can be lessened. Like I said, CAMH's can be great at looking at the core issues, but poor at long term support or solid reccommendations.

If you have other specific issues of concern, those too, can be looked at privately, but tend to be costly. Eg: Dyslexia, OT. etc. I had to dip into resources like the Mortgage to fund these, but the upshot was that you received an unbiased opinion of your childs needs that doesn't have an LA's expenditure agenda or post code lottery attached to the report. In my experience, private reccommendations are honest and always in the childs best interests at heart. which is all a parent wants really!

Medication is a tricky issue and needs serious research. I didn't respond well to prescription meds myself, (I'm highly sensitive and they did make me worse), but others report marked impovement, so it's very much trial and error, i'm afraid.

No medication, herbal or otherwise, comes without side-effects as I was reminded earlier, but for me, the side effects of herbal meds are way more managable and the fact that I don't take other contra-indicated meds to St John's Wort, is a bonus, I'm sure. Talk to a Doctor and Herbalist/Homeopath and see how you get on.

Anxiety is a part of ASD, so you need to look at this in depth. Reducing the cause of any Anxiety will be the key, but it cannot restrict life to the point that a person isn't living, through total fear of extending themselves. Extention can be gradual and it can be accomplished. Take each month, day, hour, at a time.

The book 'Living well on the Spectrum', may help you and your son, identify some triggers and indeed hidden issues that need addressing and can help using your son's own strengths, to overcome any percieved weaknesses.

I agree, sleep deprivation is a form of torture and I've not been able to work in the conventional sense for many years, because of it. I do nights, my husband does mornings. It's a tall ask of my husband and he does struggle, but he knows how much my children mean to me, and supports me as best as he can.

Both my boys have issues with sleep and it's very hard to manage. Even with all the strategies I've employed. See attached.

community.autism.org.uk/.../looking-sleep-advice

Can I ask that you do take time for yourself and that your husband and your daughter do the same. I didn't,  and became very unwell myself, Trying to hold it all together. My husband did the same, but his recovery has been severely protracted.

If i'd known my own health and that of my family would have suffered so badly, i'd have made some significant adjustments years ago. Without the health and support of you and your family members, things can disintergrate rapidly and can affect the family beyond words. Take time, and look after yourselves.

If you are looking to be self-employed, once qualified, to support your families needs, you may wish to link with this lady's foundation.

www.disabilitynewsservice.com/.../

School is a personal thing, but needs to be at the child's pace, not the Schools. I home educated my sons for primary, but couldn't manage secondary. (Not that bright)

Work to your sons needs/anxieties not the Schools agenda. GCSE's can be taken later if necessary, but your child's mental health, far outways any STAT's, Exam statistics etc.

Hope my ramblings are helpful.

Take care and do keep us posted.

Coogy X

Mhairi said:

My husband has suffered with anxiety all his life and has been taking meds and adjusted his lifestyle in the last 18 months to support better mental health which we hope will be a positive role model for our son to follow. 

Does he also have ASD? That would explain his anxiety etc and also it would fit with your son having ASD due to the genetic link. Has he done the free test at aspergerstest.net/.../ ?

Hello Again vickimacca,

  I was troubled by your case earlier and e-mailed a friend in the know. She has given me some info for you that you might like to read privately rather than on the forum. Let me know.

Coogybear

Hello Mhairi,

  I'm so sorry to here about your difficulties.

Can I ask? Is your son in reciept of DLA? The reason I ask, is that you maybe able to get some immediate, private, targeted support, using his benefit to fund weekly, ASD therapy sessions. This became necessary for our son, when he was at Crisis point and given the expertise of the therapist, it was money well spent.

His issues were identified by CAMH's,(Failure of the School to address his SEN), but he was only offered a few weekly sessions of support, which in the end, was not sufficient. I'm not sure where in the region you live, but cuts have had a big impact accross the board, so CAMH's support may be only very short.

From certain things that I've read and also experienced,(I also have ASD) OCD and paranoia can become worse in times of excessive stress or following trigger occurances, which are beyond our control. Additionally, the teenage years are often the most reported time when parents notice a significant change in their childs behaviour. In our experience, this was when the demands on my son, outstriped his ability to cope.

Are their any issues within School at the moment (Bullying, reading difficulties etc.)that may be adding to his anxiety? This may be worth looking into. He may not have told you.

Suicidal thoughts are often a facet of those who are in extreme angst or clinically depressed. They may or may not be acted on by an individual, but are worth taking seriously. For Sarah, on the video I posted below, it's a very real emotion related to wanting to shut down or hybernate when things become too much.

www.youtube.com/watch

For others, it's more serious.

Tony Attwood describes the voicing of suicide, as Catastrophising.

www.youtube.com/watch

Speaking as an individual who lost her ASD brother to suicide, I would always take these statements seriously. Suicidal statements should always be respected, but the individual making them needs to feel safe enough to express them. I'm no therapist, but the fact that he is expressing them to you is positive, because your son clearly feels safe enough to do so. Depression and sleeplessness also go hand in hand, so until one is addressed, this may continue.

I'd reccommend contacting the NAS Helpline in the first instance, for futher advice about resources or therapists in your area. Be prepared to wait on hold for a while as they are always busy.

Can I ask, does your son have any ASPIE contacts he can talk things through with and is he currently taking any medication to help with his depression?

My own son has found great solace in realizing he's not alone and that their are others like him out there.

Lastly, can I also just say. Keep calm. Much of what you mention at the end of your note is what might happen to your daughter and family. It hasn't yet and may never, but worrying over things that might happen is extremely draining and not a good use of your limited resourses just now. I do feel for you as I've been here myself and it's hard to know where to turn.

Please continue to ask here, as their are many who can give great advice and pointers. Longman is a Gem!

Take Care

Coogybear

Hello vickimacca,

  Can I suggest watching this video, It may help you understand why your son or daughter reaches flair-up so easily. Sarah makes a few suggestions about strategies to help with preventing children getting to the stage of meltdown and agression and this may also be helpful.

www.youtube.com/watch

Longmans suggestion of advocacy and Access to an Autism Hub is a great idea. The people there should be best placed to support you with your specific difficulties. And you shouldn't fear contacting the NAS or a local Autism hub. They will only report to authorities, if a child is being put at risk in some way.

Additionally, meeting other parents; and indeed children, who have ASD will also help you realize that you are not alone.

See if their are any ASD strategy classess in your area. Far from being simple parenting classes, these will help you identify some well practiced patterns that maybe triggering meltdowns, whilst using different methods to defuse flair-ups or avoid them all together. They should be ASD focused and therefore more tailored to your needs.

Going back to your original point. I agree, ASD traits is not a helpful statement, as it indicates areas of need, but with no provision to help you. Could you tell me who gave this assessment? If it is someone who isn't best placed to make a full diagnosis it means very little and you may wish to go back and ask your GP to refer you to an 'ASD specialist' who can assess your children more thoroughly. The reason I ask is that the word 'Traits' can be given as a 'cop-out' if services are in short supply or money is tight in the trust in your region.

Please keep in mind, that assessment is as much about ruling things out, as it is ruling things in. If, given your current situation, you feel you can source support and strategies yourself, then do so. Please remember however, that even with a diagnosis, support has very often got to be parent/child led.

If you have futher questions, please ask here any time and do contact the NAS helpline. You will be on hold for a while, but they can send you a world of info in the post or via e-mail.

Take Care

Coogybear

I agree with Longman's suggestions about advocacy and getting help from parent support groups etc. The more people that you can count as being "on your side" and the more people that you can discuss your problems with the better.

You mention in your original post that you suffer from depression. I think it is worth discussing the possibility of you having ASD to your GP. People with ASD often suffer from depression - I myself was affected before I got diagnosed. The treatment for depression for someone with ASD is different to the treatment of other people. We often do not respond to drug therapies very successfully but we can respond well to a combination of CBT and gaining an understanding about ourselves and our ASD.

Did you take the test? A number of people on the forum have used the results of the test as evidence when talking to their GP about their problems. When I took the test I was surprised about how different my score was (about 41 IIRC) compared to my wife (15) - I had no idea that we would be SO different but it has explained a huge amount of (mainly bad) things that have happened in my life.

Whether or not you are directly affected by autistic spectrum behaviours yourselves, few people are well placed to deal with officialdom. Autistic Spectrum issues could make it harder to pursue your case or deal with distressing social services interventions, but most people, unless in similar professions where they might know how to respond, would be hard put to stand up to the things that go on.

What you need is advocacy. There are mental health and learning disabled community advocacyservices but few seem well informed on autism.

Alternatively is there a parents group or a NAS support group in your area. The home and community pages of the NAS website have a search facility for finding services in your area (look for a pink map). Even if there isn't a parents group near you, your nearest one may be able to help, or point to less well known local support groups.

Parents Groups/NAS Local Groups mainly involve parents and can provide a wealth of experience and advocacy, as well as shared knowledge.

I wouldn't be scared of them ppl ,just ask for different one,to be honest I waiting for dignosis for my 6 yr old boy who's really aggressive,and the only way there seen the true picture is to come in my home so every morning I allowed all different ppl from camhs and there have all there need to no he has autism but to be honest I had to let my home be open to loads like salt pycholist ,school social worker's,which have just started cause I've asked foe them as I thought ,I might as well get all the help dntdont be scared of them you've proved you've got nowt to hide x

If you understand yourself better then you may be able to learn how to get things done more easily for your children. The arts of persuasion are very difficult for us - we have to learn how to deal with people. Non-ASD people find that they can persuade and cajole naturally.

Also, if you understand how the condition affects your thinking then you may be able to help your children by explaining to them how they need to behave in social situations. ASD children need things to be explained to them in greater detail. Non-asd children pick these skills up more easily.

No im not offended thanks for your reply , it's proably me i just dont see how that would help our son and how to get a diagnosis for support for him x

Hi and Welcome to the forum,

I am going to make a suggestion that I hope you aren't offended by. Given that you have two children with ASD traits then there is a good chance that one (or both) of you parents may also have traits but may not be aware of it. There is a free test at aspergerstest.net/.../ that will give you a good indication of whether you are affected too.

One of the reasons for raisning this is that it may have caused you difficulties in dealing with social services etc. ASD causes communications problems that results in misunderstanding and frequent disputes.

If this is the case (it is only my speculation at this point) then you may be able to have something that you can work to deal with. Your lives may then get better as you understand better why things have been going wrong.