Published on 12, July, 2020
My son is 25 now. Since the age of 8 he would not see professionals or have any discussions about his diagnosed condition or accept any support. We hoped that with age this would get easier. He had friends at school and we encouraged all outdoor pursuits e.g mountain biking and ski ing. He has been good at ‘passing for typical’ but the anxiety that this has caused has meant that behind closed doors things have been really difficult. His sensory issues were off the scale. He now wears earplugs in his room which helps but this has taken years. He has had a few jobs but never copes with the expectations. He has however held down a job now with a man doing tree maintenance (the man is very disorganised and has his own issues which is why I think it has worked for over a year)
All of his friends have moved on in life and Max is now really isolated. He has over the last few years lost interest in all his hobbies and life in general. He barely even answers us when we speak. He expresses that there is no point in life and has health obsessions.
If we try and talk to him he flys off the handle, always has. I used to have a close bond with him but that has gone now. I worry constantly about suicide but I can’t reach him. I am qualified in special needs and run parenting groups as a job but I am at a loss. I also have to finance his life in many areas but know I can’t get any benefits as he would never engage. He got disability when he was younger but once he got to an age where he had to be involved we had to stop any claims.
Our hearts are broken everyday because he is so unhappy. His brother is lovely with him but he won’t even engage with him now either. We are not pushy, love him for who he is and are proud of him but he sees none of this. I communicate with him by text which helps a bit.
He won’t eat with us, come away to our place in the Alps or engage with us in any way. My Dad committed suicide and I found his body. This is a worry for me with Max. What do we do and how can we parent him forever with no support. I don’t k ow how me and my husband have stayed together through all of these years of stress and heartache. Is there any way round financial help when someone has a communication issue?
I have paid fortunes over the years for special needs tutors just to get him through his 3 GCSEs to give him options and also to child psychologists for some help. He was under specialists too at Oxford Radcliffe hospital who said that our home life was unsustainable as he ‘passed for typical’ but in home life he was very complex and severe.in his symptoms. This was all done through video footage as we would not get in the car to attend appointments. Any advice or help would be welcome as there seems to be nothing for ‘kid’ or ‘adults’ like Max.
It sounds a very difficult situation.
The toll of masking in school and in the workplace can build up to intolerable levels for an autistic person. It is quite common for us to be able to hold it together in public and then explode into meltdowns once in a 'safe space' at home. I know I have done that a lot over the years. The cumulative toll of years of masking can also lead to a state of autistic burnout, where usual sensory issues with noise can become considerably worse.
When I am in my home environment I need that to be a quiet retreat space, where I can recover from the overwhelming noise of the outside world. I suspect that may be partly why he has reacted so extremely to noise in his home environment. Being able to block out with earplugs and noise cancelling headphones can help. Although he may only be able to tolerate wearing them for a limited time.
There are some positives to build on. He has managed to hold down a job for a year. That gives some confidence that he is able to achieve some level of financial independence. You state that you are having to finance his life in many areas. If he isn't already contributing towards household expenses from his salary then he really should be.
If he is able to mask to the extent that he can 'pass for typical' then being successful in a PIP claim is likely to be very difficult. The system is not designed to help those with communication difficulties. The idea of having to go through telephone and possible in person assessments is so daunting that it has been enough to put many autistic people off applying (myself included). However the fact that he has received disability benefits in the past may work in his favour, if he does want to claim in the future.
He is able to have some limited communication with you by text. Keep doing that. Written or text based communication is much easier to process than verbal communication. He will have an opportunity to think before replying and it is less likely to trigger an angry outburst.
In order to begin to thrive he needs to find an environment where he does not feel pressured to mask. It seems that he may hopefully have found that in his current job. Does he have any hobbies at all that he still engages with outside of work? I don't just mean outside pursuits but things he can engage with on his own at home. It is worrying that he is expressing that there is no point in life. Many autistic people will have highly focussed interests that take up a lot of their time. Can you think of anything that he has shown a genuine interest in himself over the years, that he could be gently encouraged to take up again?
Also does he have a PDA profile from his diagnosis? If not that may be something worth looking into. Any actual or perceived demands may produce an angry response from a person with this profile. https://www.pdasociety.org.uk/wp-content/uploads/2021/04/What-is-PDA-booklet-website-v2.1.pdf
Bless you Autonomistic!