Autism diagnosed as an adult?

Scentia, this is Gransnet!

Anyone can comment, knowledgeable or not.

Why do you feel it's 'very serious'? Autism is just being different, not a deadly fatal disease!

PiggyPoo because you do some rituals in your daily life does not necessarily make you autistic. Sometimes ritualistic behaviours can be a sign of OCD traits, not always, but if this is the case OCD is very treatable

Bungalowlady, I'm so sorry to hear of your struggles.

I have little experience of adult autism, but a great deal of experience working with autistic children, helping them overcome barriers to learning in mainstream education and managing daily life.
The world is very challenging for these children, and I can't even begin to imagine how it challenging it must be as an adult.
Jane10 has a wealth of experience, so please take heed of what she advises.

Of course everyone is allowed to comment and give their opinion on Gransnet. However, dismissive, uninformed comments by people with no knowledge or understanding of autism are unhelpful to someone who already feels vulnerable.

Bungalowlady I do hope you manage to find the answers you seek. .

My daughter had to take her 8 year old to the GP to be tested for autism. It turns out she doesn't have it. However my daughter felt all the questions were relevant to her. I myself have had a difficult life with poor social skills. I once burst into tears at a dinner dance because I was overwhelmed with people and noise. Staff parties were a nightmare. I would stay in the toilet rather than go and chat. Whether my daughter and have it or not, having a name for it wouldn't help.

inishowen having a name might not help, but having support and strategies to cope, could help make life a bit easier.

2 of my granddaughters have Fragile x syndrome and autism, the elder is high functioning and to outsiders nothing appears to different about her, the younger is a whole different story. It is not always easy to understand and recognise that autistic people have a huge range of different abilities, my elder granddaughter is an amazing artist for example but can't get her head around maths whereas the younger one is gifted in maths. So really just trying to say everyone is different, having autism in the family is very challenging and the world needs to realise this and accept it.

I think Ladymuck makes a valid point. Being able to give feelings or a physical condition a cause or 'name' does make things easier to bear and that n itself can lead to a proliferation of explanations and 'names'. This is no reflection at all on the sufferers, but it would be a pity - it seems to me - if those with lighter and more manageable symptoms (sorry if not the right word) crowd out services intended for those severely affected.

Congratulations to all those who feel they might be on the spectrum but have made it thus far in life without a diagnosis.
I have dealt with children and teens on the spectrum for a long time who had similar or very different traits. As Jane 10 says, there is no cure but there are strategies for dealing with the problems it causes. For children, it can mean help or support in school and in some cases out if school, but Jane 10 knows much more about what is available for adults.
Being anxious that there is something wrong with you is a big issue and it is exacerbated by reading stuff on the internet about how others are brilliantly clever or have fantastic social lives and hundreds of friends.
Having a diagnosis for the problems you experience could be a great relief, as long as you don’t expect it to change your life. What is great is that (if you are a gran) you have raised children who have gone on to raise their own families without the support you may well have needed and deserved. Good luck with your appointment Bungalowlady.

I was 51 when I was diagnosed. I taught myself to do eye contact and learned quite a lot about body language. I also learned to pace myself with social interaction and take quiet breaks when I needed them. There isn't really any support for adults though.

Piggypoo,'rituals' suggest OCD,which isnt autism,though can run alongside it or be a condition on its own.

Thank you Lady Muck, for your first post, I am also antisocial but push myself to
try and appear "normal". Reading the threads here made me wonder if I am autistic but then read your sensible post and felt reassured. Unfortunately I now live in a block of Retirement Flats where they go out for meals etc. I have a food allergy so use that as an excuse!

PS Although I don't like groups I am always polite and friendly to the other Residents here, not so antisocial that I cant pass the time of day! Hopefully that makes up for not joining in.

I agree Scienta!

My DGD was diagnosed at age 14 and it has been a help to everyone to know the difficulties she experiences and to make suitable allowances/changes both at home and school.

Autism isn't a mental illness, and it can't be 'cured', although some people are very severely affected and may need ongoing help
It's just a different way of being, and covers a huge spectrum. It's also very much more common than realised.
Children with severe autism need, and receive specialist help, but those mildly affected are often not recognised, and are merely viewed as maybe a bit eccentric. My son is high-functioning Aspergers, and has felt much more comfortable with life since that was confirmed.
He gained a good degree and is head of a large design company, so he's a bright fella, but he did have problems socially, especially as a child. He often says that he recognises his own peculiarities, but being an artist, its expected that he's a little unusual.
If you are an older person and can't get access to diagnosis, there is a wealth of information online about the very many successful people who are 'on the spectrum'.
You dont need to be cured, but you have to learn self-acceptance and a certain amount of coping strategies for situations which you find particularly difficult. If you are really struggling or becoming depressed, you may be able to find NHS help, but there are some very good self-referral mental health sites online - they differ from area to area.
I wish you good luck in finding yourself - you are not wrong or ill - you just see things differently and that can be a gift.

A friend of mine has just had a diagnosis in middle age. She had self diagnosed and was in two minds about getting a formal diagnosis but it has been a positive experience for her. She has told us that the right response for her friends is “Congratulations!” She had recently been failed by the assessors on a University course and her appeal against this on the basis that reasonable adjustments for her autism were not made was refused partly on the ground that she did not have a formal assessment. So that might be one benefit of having an assessment. Access to assessment and how it is carried out probably varies from from place to place. It seems autism is under recognised in women and girls because assessment has been based on boys and men and girls and women do not present in the same ways. I think it is useful for us all to learn more about autism because we will all know people with autism and it is easy to misinterpret other people’s behaviour and hurt them or be hurt by them.

My daughter in law who is a teacher thinks I am " on the autism spectrum". She is probably right. I would not want to change me and neither would she or anyone else.

I don't know wether the adult tests are the same,but after 3yrs wait my son (now nearly 17) was tested as an early teenager and was found to be 'borderline' so then they decided that meant they could not declare he 'officially' had ASD,but he told me some of the things they denied he did he didnt do,and vice versa,and like Mary XYX he had by then 'taught' himself to look people in the eye,as thats what they wanted him to do,and the 'right' ways to respond/ give 'right' answers,so its not a correct diagnosis as these people obviously could not tell the difference,this meant he couldnt get the help he so desperately really needs,but when i looked through some of his medical gp notes it said 'aspergers' on his list of diagnosis,yet no ones said to me officially he has this,yet it would explain so much about his behaviours,he has people he speaks to at college but doesnt want any best friends,and won't go out to socialise with them,he has 'gaming' friends on videogames and he's happy with that.Everyone is different in how they perceive things.My grandson has autism diagnosed when a child,he's now 21 and he dislikes socialising,but he's not withdrawn and can't speak.he just likes to choose whom he speaks to.

Meant he did do,& vice versa.

How has one person got a private diagnosis for £70 yet someone else was told it will cost £1000 for the same thing?

My elder son has OCD,but when they offered to 'treat' it when he was a child i decided to not put him through that as sometimes the sufferer replaces one ritual with another,or more than one,in its place,so i felt he was better managing his ritual of handwashing,which,whilst not completely eradicated,he now only does it when he's over-anxious.

There is support for adults on the spectrum but its very variable throughout the country. In Edinburgh there is a specific centre for adults with AS (without a learning disability).
Last time I heard there were 2000 people registered with them. They provide a whole host of services. www.number6.org.uk
There's also an organisation for parents of adults with autism www.pasda.org.uk
These were both set up after a lot of work by grass roots- parents, individuals and interested professionals. It can be done.

I have long suspected my husband is on the autistic spectrum. Two of his four children have a diagnosis; one of Autism and one Asperger’s and his oldest grandson (12) has recently been diagnosed too.

DH is unlikely to pursue formal diagnosis as he would probably have to pursue this privately, but I think it has helped him immensely in recognising and acknowledging that it is quite likely that he is on the spectrum. I have thought it for many years, but never mentioned it until he brought up the topic with me.

I hope, whatever course of action that you take, that you get some comfort and it helps. It has certainly helped DH to understand that there is a reason why he feels different. I think that the fact that I privately thought he was on the spectrum from early in our relationship certainly helped me to understand him better. Wishing you the best of luck.

I have long suspected that I am on the spectrum along with my father and two brothers. My youngest son was diagnosed with Aspergers at the age of 9, he’s now 28 and while incredibly intelligent he can’t function well in real life so doesn’t work and doesn’t socialise outside the home. I would like to get a diagnosis because I have extreme social anxiety and don’t like being touched. One of my biggest fears is being in hospital because the idea of sharing a ward with other people would traumatise me. I am an underachiever so I would be easier on myself if I knew that there was a definitive cause. I have suffered lifelong anxiety. It would make a huge difference to me. I am 56.

Hi ladymuck

Not all autistics are completely withdrawn from society. I was diagnosed aged 59 and am now feeling my last 50 years have been vindicated. It was a huge relief and in fact when moving to a new area I set up an autistic women’s only weekly meet-up which has proved highly successful and is the only time during my week when I can truly be myself and accepted.

I spent my first 59 years trying to fit into a society which rejected me and although I spent 20 years of that as a firearms officer I hated it. I’m now not working and have never been so happy although I still suffer with anxiety 24/7.

Please do not stereotype autistics - like neurotypicals there is a very wide range of personalities/difficulties and your perception of autism is not necessarily how the reality is