Alexythemia - help needed

I believe my 20 year old autistic son has alexythemia.  Since his ASD diagnosis at 13 he has had numerous rounds of traumatic and agonising CBT, with no effect whatsoever.

A year ago, during his latest attempt at Talking Therapies, the lady he was seeing discharged him saying that they were unable to help him.  She referred him for an alexythemia assessment.  It took 10 month of referral tennis for them to finally admit that the clinical pathway he needs doesn't exist. 

My son suffers from severe anxiety and depression.  Because of this he lost his education.  There was no school that was prepared to support him and the local SEND department were simply not interested.  He is highly intelligent, but spends his days sat alone in his room.  He does not leave the house, will not answer the phone.  Since lockdown he will not engage with the 2 groups he attended prior to March as he can't cope with Zoom. 

He desperately needs a support worker.  We have a direct payment agreed with the council but I cannot find anyone that he is able to engage with.

I know that I should be at home with him to try to help him, but I am a single parent and have to work to keep a roof over our heads.  The guilt of having to leave him alone every day is unbearable.

He needs help.  There is no one to help him.  One day I will no longer be here.  I need to know that he will be able to achieve some level of independence as there is no one other than myself to support him.  He will be utterly alone. 

He needs help, but it will always fail unless he has an alexythemia diagnosis and able to access the correct form of therapy   Then we can start to work on his anxiety and depression and actually get him to be able to leave the house. 

Does anyone know how I can get him the help he needs? 

Parents
  • It's a hard one, I have aphantasia but I wasn't diagnosed as part of my autism. 

    I was diagnosed as part of a clinical trial, it's a weird one but I have a pain disorder and was having imaging done where they hooked me up to electrodes and asked me to imagine a chair, a book, a red ball etc and I can't do it. 

    I went to a Catholic school (west of Scotland, what can I say?) and there was a lot of weird guided meditation "picture yourself walking along a beach, the sand is warm beneath your feet, there's a breeze coming off the sea, you can smell the Ocean. Jesus is with you taking away your worries" and I'd just laugh and laugh at the absurdity of the thing, I didn't realise that everyone else in the room could actually do it, I thought it was an Emperors New Clothes scenario where they were all pretending they could be on this beach in their heads.

    Anyway, the neurologist sent me to a neuropsychologist who did some tests and my brain doesn't react the same to these things as everyone else. I know what a chair is, obviously, but unless one is right there then I can't picture it. Well I can picture a rudimentary chair sometimes. I also can't hold a picture of people in my head, I know who my mum is but I can't make her face appear in my head right now. Other people find this sad but it doesn't bother me.

    Your son is in for a bumpy ride, there is probably a diagnostic pathway for him but does he want a diagnosis? Will he engage? I don't care about my aphantasia, I don't care about my diagnosis, I wouldn't have pushed for it. For these rare things you often need to be vocal and push for an opening. In my case the neurologist needed to know why I wasn't reacting in the scans so he could include or exclude me from his study, I certainly wasn't the one pushing. 

Reply
  • It's a hard one, I have aphantasia but I wasn't diagnosed as part of my autism. 

    I was diagnosed as part of a clinical trial, it's a weird one but I have a pain disorder and was having imaging done where they hooked me up to electrodes and asked me to imagine a chair, a book, a red ball etc and I can't do it. 

    I went to a Catholic school (west of Scotland, what can I say?) and there was a lot of weird guided meditation "picture yourself walking along a beach, the sand is warm beneath your feet, there's a breeze coming off the sea, you can smell the Ocean. Jesus is with you taking away your worries" and I'd just laugh and laugh at the absurdity of the thing, I didn't realise that everyone else in the room could actually do it, I thought it was an Emperors New Clothes scenario where they were all pretending they could be on this beach in their heads.

    Anyway, the neurologist sent me to a neuropsychologist who did some tests and my brain doesn't react the same to these things as everyone else. I know what a chair is, obviously, but unless one is right there then I can't picture it. Well I can picture a rudimentary chair sometimes. I also can't hold a picture of people in my head, I know who my mum is but I can't make her face appear in my head right now. Other people find this sad but it doesn't bother me.

    Your son is in for a bumpy ride, there is probably a diagnostic pathway for him but does he want a diagnosis? Will he engage? I don't care about my aphantasia, I don't care about my diagnosis, I wouldn't have pushed for it. For these rare things you often need to be vocal and push for an opening. In my case the neurologist needed to know why I wasn't reacting in the scans so he could include or exclude me from his study, I certainly wasn't the one pushing. 

Children
  • Having a diagnosis of anything is more than just understanding of yourself which most people seem to forget.  

    If your experiencing extreme stress and dysfunction you cannot seem to get the active support and right treatment without every diagnosis being diagnosed and statemented unfortunately diagnostic services are fragmented only able to diagnosis one disorder at a time which is honestly what is creating a massive waiting list. Many individuals who are diagnosed with autism like myself have to go through multiple waiting lists waiting to be comorbidly diagnosed for Attention Deficit Hyperactivity Disorder, Alexithymia, Aphantasia, Dyspraxia , Dyslexia and other specific learning disorders.     

    Without the right support individuals do not have the access or opportunity and are unable to manage and cope with the education system, Employment and basic life skills. If they are unable to work or attend college most people end up on benefits the majority of their life or their entire life because of this reason and without specific diagnosis many benefit and support are withheld behind decision maker at the department of work and pensions decisions. most commonly reason autistic individuals are refused employment support, Personal Independence Payments is because lack of medical evidence of comorbid condition with autism spectrum disorder. 

    From someone still waiting to be seen for both Alexithymia & Aphantasia it has impacted my ability to work most entry level job in both Retail, Hospitality, Social care and even in the Agriculture or Horticulture industries . The amount of times i have be unfairly disciplined with warning and even managed out of the workplace because i forget to smile or act with appropriately expressions (Face being blank). Not to mention that some people in the workplace use it as an excuse to bully and assault their coworkers.

    Have a diagnosis At school would have helped a lot because i was an easy excuse to blame me for causing a situation because most spiteful children fake their expression to manipulate situation and outcomes. those with Alexithymia look guilty because we don't express much or don't express the right expression which make us look guilty or as we don't care. even teachers get annoyed and frustrated with us because we appear unpredictable and that make them uncomfortable