Published on 12, July, 2020
I’m mum to a 20 yr old female who was diagnosed with Aspergers when she was 8. Life has always been challenging, yet as a family we’ve managed to cope-until now! I’m sure the covid situation is a contributing factor but many of the issues were there before but I put on a brave face & muddled on through, yet the reality is now I really cannot cope, but don’t know where to turn. Many issues appear to be pretty standard it would seem-she rarely leaves her room, games all day, resists showering, doesn’t tidy up after herself, over eats, refuses to help with small tasks around the house generally treating the place like a hotel. She can be sociable & chatty towards us one minute then angry & aggressive the next, wanting everything on her terms. She knows the basic house rules but is non compliant and basically does whatever she wants! She was supported throughout her school years with a statement/EHCP & scraped through her A levels and secured herself a place at our local university where her effort is minimal, often needing to re submit work that falls below the required pass mark. She had been in receipt of P.I.P, that followed on from her childhood award of DLA but that was recently ‘taken away’ from her on the basis that she attends university & therefore can manage the rest of her life! I have of course appealed the decision as this is not so! On a personal level I feel like I’m drowning!! All the support we had in place 2 years ago has been removed bit by bit and I may appear selfish when I say that I really cannot face the prospect of this situation carrying on indefinitely. Her last EHCP stated that she would ‘require substantial support to be able to live independently’ and yet there appears to be little out there that can help me, as I am that substantial support-the unsupported, unpaid carer! I’m by no means a bad mother, I have supported her & fought for her rights throughout her school years but I’ve reached the point now where I feel I could just turn her out on the street. Even though I feel this way, the prospect of doing so actually makes me cry......
Hi. Your post made me cry. I think I know exactly how you feel and it's a constant struggle 24 hours a day - which greatly affects the mental health of other family members. I have researched support services for the past 12 years, state funded, private and charities, and reached out to many. Sympathy is given in abundance, support has been very limited. My GP placed me on anti depressants and told me my son, then 20, was an adult and I should just ask him to leave the family home and I know that friends feel the same. However, like yourself, I know that my son would end up on the streets with the copious numbers of young people who struggle with life - he is unable to look after himself without support and that is in almost non-existent supply.
My son is now 24 and has suffered with mental health issues since the age of 12. He was referred to CAMHS several times until he was 18, who were next to useless in our rural area. He was always a school refuser and eventually totally refused to go to school in year 11 until the school agreed for him to drop subjects he considered pointless. He gained 5 GCSEs but was predicted 11 at A/A*. He is an incredibly intelligent young man, but lacks motivation and an inability to do things he thinks have little purpose - including self care, eating (over/under eats) and has is impulsive with money . He went onto college to study computer gaming but dropped out as he couldn't cope with the structure and expectations. He just about completed an access to uni course, which shattered our nerves whilst he was doing it, and 2 years ago he went to uni 250 miles from home, because it was the only uni in the country that did the specific course he was interested in. We were so so proud of him but in my heart of hearts I knew he would struggle greatly and contacted the uni student support team in advance to let them know the situation. They were encouraging and reassured me that support would be available. However he only attended one lecture, after he was criticised by another student during that lecture, and he basically moved from living life in his bedroom at home to living in his room at uni. Student support refused to deal with me as he was 22 and therefore independent. Having made several urgent trips to see him when he felt suicidal, eventually he came home at the end of the first term. So our son is now at home 24 hours a day, either gaming or doing computer research on obsessive topics which he then 'lectures' everyone else on at every possible moment.
I am convinced he lives on the spectrum and is high functioning. CAMHS refused to assess him and because he didn't want to be labelled, he has always resisted support. As an adult, there,was suspicion that he was psychotic and we were given a support worker who visited every week - the only support we've ever had as my son struggles to engage. The support was amazing and the chap tried so hard to get our son to try new things, go to new places etc and was met with polite refusal constantly. It was eventually decided he wasn't psychotic and so support was withdrawn. However the support worker suggested my son be assessed for....Aspergers. However my son refuses as he doesn't want to be labelled. His whole life revolves around anxiety, depression and a lack of motivation and he hates his life. He's desperate to make friends who accept him for who he is, he often talks about not having children because he doesn't want them to be like him and social anxiety restricts him going out. However the internet is not a healthy place to live!
My son can be a lovely, caring, witty, intelligent young man. However he can also be empty, self-hating and often has existential crises where life is pointless. We wake up every day hoping for the former and dreading the latter but life is a rollercoaster and can change from one hour to the next. It tests our marriage, means that we don't invite anyone to our home as is very isolating. Friends/work colleagues always ask things like " has X got a job yet?", "Did X go clubbing at the weekend?", "Is X going away this year?". Every time they ask, we despair, as they obviously haven't understood the situation we've been describing for 12 years. Why should they?
We see no end to our situation and that can be very depressing at times. We try to continue with our lives, we both work which can be difficult when some nights you've only had 3-4 hours sleep. However there are times when we'd like to be at home chilling but have to go out as my son's obsessive preaching just gets too much. We don't feel relaxed and comfortable in our own home.
Last night our son had a crisis and after 2 hours of confrontation, he eventually called 111 to say he felt desperate. They listened for an hour but then told him to go to the GP. I know and he knows he won't as the GP will suggest medication and he is 100% anti medication.
So I feel your despair and my guess would be there are lots of parents with highly intelligent adult children at home in similar situations.
Thank you so much for taking the time to share your story with me. We also took the CAMHS route a few years ago and were quickly discharged! The GP is sympathetic but that’s as far as it goes. We had a serious conversation with her a few nights ago & my husband made it quite clear that if her behaviour continues this way, she will have to go. As she was calm & willing to communicate we asked her why her mood swings are so severe, what happens to make her change so dramatically & she admitted that she really doesn’t know. I’m seriously looking at PDA now, when you read the descriptors she actually ticks every box!
For the last two days we’ve been dealing with chronic meltdowns and burying her head in the sand after she discovered that she has failed a unit to pass her second year at university. She has now got 6 days to re do & re submit the assignment to save herself. Of course if she’d checked her uni emails sooner, she would have had longer to do the work & if she got on with the work she’ll stand a chance of scraping through, however she’s just putting it off & ‘sharing’ her stress with the rest of the family.........