Personal accounts - Sue Foreman

Our son was a shy, sensitive, introverted boy who struggled socially throughout his entire school life. His unusual body language and ‘matter of fact’ way of communicating, coupled with a flat monotone to his voice, meant that he was a target for the school bullies. However, academically he excelled, winning shields and commendations particularly in the fields of maths and science.
 
When he entered senior school he continued to excel academically but struggled socially from the outset. His shy, quiet demeanour gave way to sudden, unpredictable explosive outbursts that eventually caused him to be expelled from school.
 
We asked for home tutoring or funding that would enable him to have a placement in a specialised school more suitable to his needs. Instead he was placed in a pupil referral unit which he attended just two days a week. He was unable to settle or engage with the other placements there and left after two terms with no qualifications and an abject sense of failure.
 
Bored and lonely at home and with no job prospects his explosive outbursts escalated and his mental and physical health deteriorated. We sought help from the mental health services who failed to assess our son properly. After just two short appointments they discharged him from their services saying there was no evidence of mental illness and, worse, it was implied that we were a dysfunctional family who were probably the cause of our son’s distressing behaviour.
 
Desperate to make friends, he lurched from crisis to crisis and would frequently come home in a distressed state because someone had made fun of him or taken his money. As his explosive outbursts increased yet further, I would frequently come home from work to find he had run amok in the house smashing mirrors and ornaments. His response once he had calmed down would always be, “I got a bit upset, it all keeps going wrong for me.”
 
Eventually I had to give up work because our daughter was becoming unwell with the stress of it all. I returned to the mental health services to push for an assessment and to be recognised as a carer. We were excluded from meetings even though it was abundantly clear to us that our son’s lack of insight meant he was unable to give a true picture of his needs. Once again we were informed that as there was no apparent mental illness they were not able to help. We requested a social worker to support him with his socialising and a possible work placement but we were told that he was not eligible.
 
Our son’s explosive outbursts started to occur outside of the family home, eventually bringing him to the attention of the police and the judicial system. The courts ordered an assessment that led to an Aspergers diagnosis. Unbelievably this did not win him the funding we so desperately needed. We were told that Aspergers did not come under the umbrella of mental health and that he was too ‘high functioning’ to come under the umbrella of the learning disability services. The local Autistic Society told us that he was certainly eligible for help from them but that the funding had to come from the local authority. We were just going round and round in circles.
 
Tired and exhausted we were unable to cope with our son living at home with us anymore and we set about trying to find him some suitable accommodation. With no support or funding in place we were unable to find him specialised or supported housing. Any housing we found for him would last about three or four weeks. He would then get upset about something or someone, lose his temper and get thrown out. Without our daily support he failed to eat properly and he would constantly turn up at our door in a highly distressed state.
 
At times he was homeless and we took the painful decision to leave him in this predicament in the mistaken belief that he might then come to the attention of the ‘caring’ professional services. This was not to be. Left to flay around, he began to drink and was eventually ‘befriended’ by the drug culture. Frequently he came to the attention of the courts who ordered another assessment. The judicial system paid over a thousand pounds for an in depth assessment that confirmed his Aspergers diagnosis. Once again we came unstuck with funding in spite of a supportive letter from our GP and one from the probation services.
 
Our son began to drink excessively to relieve the boredom and loneliness of long, empty days. He returned to live with us but when it all became too much we had to ask him to leave and he would then frequent the night shelter in a nearby town. Once again we pleaded for help and support for him to no avail. We steered him towards the alcohol and drug advisory services, who said they were unable to help unless the mental health services worked alongside them.
 
Frequently he was taken to A and E to be resuscitated because he failed to understand the ‘cut off point’ when using drugs. Instead, he would get upset, take huge amounts of drugs in one go, and then go for weeks on end without using any at all. The substance misuse services explained to us that he was not an addict in the true sense in that there was no pattern to his using. We were advised that as a vulnerable young adult he desperately needed help to address his lack of self awareness and his emotional distress. They called a meeting with the mental health team who were still adamant that our son’s difficulties did not fit their remit. To make matters worse they implied the diagnosis was wrong and that he probably had an untreatable personality disorder.
 
After seven years of fighting for funding we finally accepted we were on our own and our son returned to living with us fulltime. Then one evening at the end of March 2007 he came home in a distressed state. Unable to manage his feelings, the following morning he travelled to a nearby town and bought some drugs from one of his homeless friends. He also drank a bottle of alcohol. The combination proved to be fatal. Slipping into unconsciousness, he also suffered a cardiac arrest. For six days he remained deeply unconscious on a life support machine. Severely brain damaged we took the painful decision to have the machine switched off. He died two days later at just twenty three years of age. His entire life had been coloured and driven by the need for acceptance.
 
In his short life he had twenty five convictions for affray and yet was not considered a criminal. He had five admissions to A and E for drug and alcohol overdoses and yet was not considered an addict. He was too bright and intelligent to be diagnosed as having a learning disability and not ‘mad’ enough to be diagnosed as mentally ill. In short he fitted nowhere in the system. Instead our intelligent, deeply troubled son was condemned to a life on benefits, frequent homelessness and certain death.

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Sue has also put together a list of recommendations regarding the treatment and care of her son. These can be downloaded here