Hoffmann Foundation for Autism
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Autism uk

Hi I am currently on the waiting list for an assessment and have been told there is a very long waiting list. Because I been put on the waiting list does it mean they know I am autistic. Because I have been told by a physiatrist I am autistic but she wants me to have a fuller assessment. I am currently not receiving any support from anybody I have 2 children. Please can someone give me any advice

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I think your psychiatrist has reasons to believe that you may show some of the traits of ASD but is not sufficiently trained to formally diagnose adults. It may equally be possible that you may have ADHD and or ASD - a proper assessment is therefore required to be certain. There are more than ever adults being diagnosed these days as professionals become more aware and educated in the issue. One thing I would say though, is do not expect a positive diagnosis to make a huge change to your life so far as support is concerned, although knowing for sure may make a huge difference to how you feel. If you are formally diagnosed you can expect some input from your local ASD conditions team who will need to determine how the condition affects your life and whether there is anything they can do to help you. There are some benefits which can be claimed, but I am aware that the assessors will be looking at the level of the condition and whether it affects the person severely or very mildly. They will also be looking for co-morbid conditions which often occur with ASD such as anxiety, depression and social issues as these all have an impact on the persons life.

Some people live with the condition and it only very slightly impacts on their lives, if at all, whilst for others the condition means they are unable to fit in with society as they would wish and feel isolated from the rest of the world. For others the condition is so severe they are unable to communicate at all, whilst for others the conditions means they have special talents which many people do not have. The fact that you have been in a relationship and have children suggests that if the diagnosis is positive, you would probably be seen as 'high functioning', you may have heard of Asbergers Syndrome and in the past, many such people would come under this heading. However, the diagnostic criteria are forever changing and at the present time the levels 1, 2 and 3 are being used, with 1 being the mildest form and 'high functioning' would likely fall into this category. It should be mentioned however, that not all professionals are happy with the current levelling criteria and some do not use it as they feel that the levels do not accurately reflect the support required. Indeed, my 28 year old son was recently diagnosed and the consultant refused to categorise him under these levels and instead said in his opinion he was a complex case of mild to moderate ASD he said it would be up to the ASD conditions team to determine the level of support necessary.

It may be a long wait, or you may find that it is quicker, as it was in my sons case, which meant it was only a couple of months. However, he was already involved with secondary mental health and formally diagnosed with Severe depression, Anxiety Disorder and Social Phobia - in his case, the effect has been catastrophic, leaving him a total recluse with no friends and no life outside of the house. If you too are already diagnosed with one of the above conditions you may find the assessment comes around a little quicker too, but I would imagine it depends on where you live and what provision is available.

I hope this answers some of your questions, I am not in anyway an expert in the field and I am only writing from personal experience - if anyone wants to correct me if I have made any mistakes please feel free. Good luck and please keep us all up to date.

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Thank you my asd affect my life in a lot of different ways. I would say I also have ADHD as well. I have the mental health team involved but they are useless.

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I am surprised that the mental health team are not supporting you in this, as in my experience they have been very helpful. A letter of support from them can go a long way in speeding up the process, they will probably expect the referral to come from your GP. In my son's cast the diagnosis was bought about by the NHS commissioning services from the private sector,but I recognise this may not be policy in other areas. The diagnosis only covered the ASD and my son has now had letters written to his GP from both the ASD conditions team and the mental health team to ask for a swift referral to the Maudsley hospital in London for the ADHD assessment. I have to say that in the area I now live, the secondary mental health team is very proactive in its approach, but I do appreciate that this may not always be the case. Would it be worth you writing a letter to your mental health worker (if you have one) and asking them to write a letter in support of your assessment? You could state all of the ways in which you feel the condition affects you. If this is not possible, then it may be that you will have to wait. In the meantime, please do not consider going privately as this is very expensive (£1000 at the very least and probably more ) and even if you got a positive diagnosis it is often not recognised by certain professionals who will insist on a NHS assessment.

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Hi I have a care coordinator from the mental health team and see has seen the letter I had from a private physiatrist recommendation for the assessment to be done as quickly as they can. And it stated that my care coordinator should speak with the autism team and ask them to do the assessment as soon as possible. She has not done this. Really stuck with 2 children and no support. The mental health team stop the support that was helping me get out house and now I have no support at all. I was meant to have a meeting with my care coordinator 2 weeks ago but she cancelled and has now said there is no one I can talk to and I can’t see her until January

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Hi There..you may be entitled to recieve support from an advocate, If you are on a CPA. Your care coordinator will be able to tell you this and also be able to tell you who the advocacy provider is in your area. They would be able to give you support in this matter. Hope this helps and I hope that you are not waiting too long. I

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Just an brief update I am still on the waiting list. The mental health team have discharged me so I no longer have a care coordinator. Even though I was sectioned and should have section 117 after care funded. In my discharge meeting me and my husband shared our concerns with me not having any mental health support and not allowed to be referred in again for at least 3 months. My gp has made a mental health referral and she agree I do need mental health support. Any one else had problems with the system not knowing the full details about you.

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Looks a bit of a mess for you at the present time- I’m sorry to know this. Christmas does seem to come at a time when many people need help and the break Seems a very long time. I am sure you will have some crisis numbers which I urge you to use if things become too bad. In the meantime I am guessing that January will be the earliest. But keep on the case, don’t give up, be a nuisance if necessary- but be heard! This is what I have had to do because those who don’t shout loudest often are the last in the que. I’m sure in January things will start moving again - but use those numbers if you have to - good luck .

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By the way - there is nothing to stop you sending or scanning the letter From the psychiatrist to autism services with a covering letter or email yourself - I did this and it got my son seen swiftly. Find their address on the Internet .

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Hi I have sent them a copy a month ago with no response. The crisis team is useless in my area they don’t care. And as I am already under the mental health team they will just say I have to wait until my appointment with my care coordinator. They really are useless in Devon

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I used to live in Devon for years before moving to Kent . I have been involved with services in the Torbay area and know of a friend whose adult son was diagnosed last year and he Is now living independently with a support worker twice a week. So it can and does happen - try and keep a positive attitude and build up a good relationship with the teams . They are pressed to the limit And will Respond well if you can build up a good working relationship with them. It seems you are in for a wait but try and be as positive as you can and hopefully things will move on in the new Year.

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Me 2 thank you. Have a great Christmas x

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My husband has recently been put on a waiting list to be assessed as an adult. It is a long list here too and there is no support. Our two children have been diagnosed with ASD and there is little support for them either. I think the only help we get is a parenting course. What the diagnosis has given us for the kids at least is a chance to access support groups. Also, my son gets DLA which allows us to apply for a cinema card. My son gets support at school, but my daughter doesn't really get much help at the moment (the school haven't recognised the diagnosis yet). As for an adult, I have no idea what support they get. What my husband needs is lots of counselling and friends. He has no friends but myself. Our marriage is currently strained and we are trying to get marriage counselling (again). It's not easy as I am not certain that I can be classed as Neurotypical either! If you need advice, the best place to go is the National Autistic Society website. They also have a helpline which has been useful for me. I'll send the link. Good luck and I hope things go smoothly for you.

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