Published on 12, July, 2020
My son has recently been diagnosed. He managed to cope with life throughout his school years but when he left home to go to university he became very anxious and depressed. Despite this, he graduated last year after 3 lonely and unhappy years. It broke my heart to see him so isolated but although I tried to persuade him to drop out of uni and come home, he insisted on finishing the course.
Since last summer, he has had one temp office job which didn’t work out as they weren’t aware of his autism and he was unable to work to the standard that they were expecting. They liked him but in the end they suggested that he might want to resign rather than wait and be fired. Since then he has been unemployed. I found a local community arts centre for mental health and they have taken him on as a volunteer but this is only on one half day a week. They also arranged for him to do a short course at evening class on teaching skills as he is a talented musician.
Most of the time he spends in his room on his laptop. It is 11:30am and as usual he is in bed. He has no motivation to help me or his dad and has regressed into the role of a child with us running around after him. I am finding this very stressful as his older sister is disabled and is also unemployed although she is trying her very best to get a job.
I have put him in touch with the local autism centre but he doesn’t want to meet other people with autism. He is extremely intelligent and knowledgeable about a number of subjects. I am very concerned that he is so unhappy and anxious. He says he wants a job, a girlfriend and just to be ‘normal’. I have found a psychotherapist who specialises in Aspergers and I am paying for private sessions as my son says that she ‘gets him’. In the meantime I am unable to turn to friends or relations (with the exception of his dad) for support as he has told me not to tell anyone.
I don’t know how to help him. Are there any parents in a similar situation or that have had to cope with this sort of issue? To be honest all this is starting to affect my mental health.
Flipping tough isn't it!. we still have days when it seems like I nag but, we have daily lists that he has to go through, like checking and updating social media, checking his website for sales and all the processes of packaging it and sending it off, then if i'm busy he can just go through the lists and follow the instructions, its taken a bit of time to come up with all the different procedures but thats been really important, we have a daily meeting at the start of the day and he delegates jobs to me. We have strict rules on new ideas, they have to go in the book for the next mornings meeting so as not to overload the day.
I've managed to get 12 hours free business support with our local council and they have been brill , we do it in 3 hourly sections 1to1 and they let me sit in and take notes, its really helped. When he 1st started we managed to get the grant for starting your own business I think that was £65 a month or week for a few months (sorry it was a while ago) the biggest help to our day is that I have a laptop so I can check his emails and sales to make sure he doesn't miss anything and google calendar, I can add tasks from my computer and he gets the reminders pop up on his. it means I don't have to ask or remind him to much.
As a mum, I feel like im doing the best I can for him and championing his corner, helping him be the best version of him that I can, but as a person it can be a lot of work, our work dynamic has changed a lot, my jobs are getting more menial (tonight im cutting out 250 key ring photo's) and he is taking on more. its taken 3 years to get here and I think if we had gone any faster he would have crashed.
If I can be of any help or support, just ask. It makes me very proud when he sells stuff or get good comments about his work, it makes all the hard times worth it
BC x
Thankyou for your message. What sort of support do you give your son with his business? I am thinking about helping my son to set up as a private tutor but I don’t want to end up spending my life nagging him.
I know what you mean about a break alone. I have found myself fantasising about running away on occasion. But then I come back down to earth and realise that I couldn’t leave the people I love behind. So then I think about us all running away together and starting a new life maybe buying a smallholding and living the good life....or sailing around the world......but they wouldn’t agree to it.....so I guess I had better just keep calm and carry on
.
Hey, my son is 22, diagnosed with Asperger's at 15. He tried a few different work placements but just couldn't cope. he now runs his own business from home as a photographer and digital artist, with my support. its hard work supporting him all the time but I think he'd be in the same position as your son if I wasn't doing it and be in his room a lot of the time. its brought him out of him self and given him more confidence and a sense of worth. Because My son gets pip it opened up the door for working tax credits for him, so even though he earns very little the working tax credits help him do a few extra things. Im sorry you and your son are struggling at the moment. Im struggling at the moment with it all as well, I don't know about you but I could do with a break, on my own, with a good book and no phone! Here if you want to chat
Sorry I didn’t reply sooner. Things have been hectic. Thankyou for you supportive words, I hope that things improve for you and your son. My son has expressed a wish to teach piano and guitar privately from home. It is good that he is thinking about the future at last but I know from experience that words are not the same as actions. I have offered to help him but I don’t want to end up being his boss. What sort of benefits and support does your son have (apart from yourselves)?
Thank you for your information. Very kind.
sue
Hi - I am afraid I don't really have any advice but I can certainly empathise with your situation. My son is 17 and totally socially isolated. He refused school because he was so anxious and ended up in the local PRU for his last year - this eventually worked well for him and he started to make contact with others in his group, but sadly ended as he was 16 by then. He has spent the year since then refusing college and staying in his room, obsessively playing computer games, sleeping all day, and getting more and more depressed. He has an EHC Plan but nothing seems to happen to help him. My husband and I both work full time and struggle to support him as much as he needs. We also have a daughter who is 14 and happy enough thank goodness. But god I understand the sorrow and guilt and misery that affects the parents, and the frustration at not knowing where to find help or what that help might look like. Thinking of you !
Hi NAS62665,
I am sorry to hear that your son has been struggling since leaving university. I have included some information below to some of the services that we offer at the NAS, that you may like to contact to get some advise and support.
You may like to contact our Autism Helpline team who can provide you with information and advice . You can contact the team via telephone on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm). Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor. Alternatively, should you prefer to send a message, you can do so via their webform: https://www.autism.org.uk/services/helplines/main/questions.aspx
You may like to contact our Transition Support service, who offers advice, support and information to young autistic people aged 14 years plus and their parents or carers on the transition to adulthood.
If you would like to contact the Transition Support service you can reach them on 0808 800 0027. Please leave a message on their answering service and they will call you back. Alternatively, you can send a message to the team via web form: http://www.autism.org.uk/services/helplines/transition-support/transition-support-enquiry.aspx
You also mentioned that your son has been having difficulty finding employment. We have a really good section on Employment on our website: https://www.autism.org.uk/about/adult-life/work.aspx. It includes information about services and tools to support autistic people in getting work. There is also useful information for prospective employers and managers as well as a blog and tips shared by our employment training team.
In addition to this, we have a Finding Work ebook aimed at autistic people looking for work which you can purchase here.
Our official Youtube channel has some employment videos too. We'd recommend watching the following videos:
Job interviews: Emily and Max share their experience
https://www.youtube.com/watch?v=zLTf6YJOh1c
Jack who has Aspergers shares his story
https://www.youtube.com/watch?v=Y_uN2LFv4WA
Making sure employers understand autism
https://www.youtube.com/watch?v=h8iF0TAmyr4
Autistic young adults talk about career ambitions
https://www.youtube.com/watch?v=qbjlRVUhd1s
You can also browse for employment services on our Autism Services Directory: http://www.autism.org.uk/directory/browse/cid=30~aid=6.aspx
https://myplusstudentsclub.com/ is also a good website to look at. It is a site on which employers advertise their opportunities for people with disabilities and they also provide information about disability and inclusive practices within their organisations. This is a good way to identify companies which will be keen to put in place reasonable adjustments for interviews and throughout employment.
Evenbreak at http://www.evenbreak.co.uk/ matches disabled job seekers with employers looking to build a diverse workforce.
Finally for yourself, you may like to contact our Parent to Parent service who offers emotional support to parents and carers of children or adults with autism. This service is confidential and run by trained parent volunteers who are all parents themselves of a child or adult with autism .
You contact the team on 0808 800 4106. Please leave a message and the team will call you back as soon as possible at a time that suits you, including evenings and weekends. Alternatively you can use contact the team via web form: https://www.autism.org.uk/services/helplines/parent-to-parent/enquiry.aspx
I hope you find this information useful.
Kind regard,
Ayshe Mod