Mothers of autistic children in crisis. The need for better services

In the UK and in other counties, public services are being cut. The cuts are made  to decrease national debts and to cut taxation because political parties want to be seen as making tax cuts to win over voters. Cuts in services have the greatest impact on the most vulnerable people. Amongst these are the mothers of  those severely autistic children. whose behaviour is challenging Fortunately few mothers end up in such crises that they kill or attempt to kill their child, but many live in fear of aggression and with too little support. The father of the child is often absent from their lives.

This post is to highlight two things:

  • the need for good educational and behavioural management services for autistic children from the time they are very young. These services decrease the frequency and severity of behaviour which will become increasingly difficult to manage as the child gets bigger;
  • the need for effective  support, respite and residential services for young people and adults whose needs are greater than their families can provide.

Without these services more tragedies will happen. Some will be dramatic, others the undramatic dreading of each new day.

I was told my autistic son exhausted all the services when he was a teen, including the state mental institution after which he was returned home to my care. At times I feared for my life. I feared for the lives of my other children. I was only told my son had failed all the services my county had to offer and that I should call the police when he became violent’


 

A 6-year-old autistic child from Newport, Oregon, died after his mother, Jillian McCabe, allegedly threw him off of the Yaquina Bay Bridge. McCabe called police Monday night and admitted she had killed her son London McCabe, and the boy’s body was discovered in Yaquina Bay shortly afterwards. Jillian McCabe, 34, of Seal Rock appeared in Lincoln County Circuit Court  for a preliminary hearing on charges of aggravated murder, murder and first- and second-degree manslaughter. A motion is expected to be filed later by Jillian McCabe’s attorneys to request a determination on her fitness to proceed, court records show.


 

Kelli Stapleton pleaded guilty to trying to kill her child by carbon monoxide poisoning, and was sentenced to between 10 and 22 years in prison. She has previously  blogged about her struggles with care and treatment for her daughter, Isabelle, She pleaded guilty to shutting herself and her daughter, then 14, in a closed van with two lighted charcoal grills. Although found unconscious, both recovered.  The plea to a charge of first-degree child abuse averted a trial for murder and led to a three-day sentencing hearing. Supporters urged leniency for their friend who, they and Stapleton’s former husband have said, was beaten and hospitalised as a result of her daughter’s increasingly violent outbursts.


Gigi Jordan was convicted of manslaughter in the first degree for giving her 8-year-old son Jude, who suffered from autism, a fatal dose of prescription pills . She faces 5 to 25 years in prison. Her defence team managed to convince the jury with a strange tale, claiming Jordan had been trying “to save [Jude] from a life of sexual torture” at the hands of his birth father. Jordan said her husband at the time was plotting her murder, and she didn’t want the boy to end up back with his abuser. Both men denied the allegations. The prosecution argued that Jordan killed her son, who was nearly non-verbal, because of his severe autism.


 

‘You guys do not have a clue. I want to kill my son! Yes I want to get help but let’s be real there is no real help any more. There is no help because there is no money in our agencies to help. Thank you all who keeps the tax cut stuff going. You have destroyed the safety net for people with mental illness. The only treatment I have been able to find for my 29 year old son is a day program that offers some group therapy. For me it’s just a babysitting service. My son is mentally ill, autistic, and mildly retarded with rage issues. He is 6′ and 240 lbs. He is mean.. My family has  drifted away because of his behaviour. I am in fear of my own safety. So yes I want him dead or gone. I have even thought about putting him out on the street in an unsafe area of a major city near me and just let the streets take care of him. He will piss off the wrong  person and he will be dead.’


 

 Health officials say the murder-suicide of a Canadian mother and her autistic son should serve as a wake-up call that drastic changes need to be made within the system.The bodies of 40-year-old Angie Robinson and her 16-year-old son Robert were found inside their home in Prince Rupert, British Colombia.Robert could not speak and would often express his frustration by head-butting walls and people and pushing and shoving his mother.A suicide note left  and her final Facebook post, showed his mother  felt she could longer manage  Robert and that Family Services could not provide adequate support.

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Autism spectrum disorders, sexuality and relationships

Autism spectrum disorders (ASD) are social communication difficulties which affect a person’s ability to understand socially appropriate behaviour. Therefore individuals with the condition are not necessarily aware, of or constrained by, the social rules which are observed by those who do not have an ASD. This presents difficulties for their development of sexual identity, sexual orientation and generally accepted sexual behaviours. These difficulties in turn influence the individual’s opportunity and availability for romantic and intimate relationships. Individuals with autism spectrum disorder typically have few or no friends and find it difficult to understand or follow the unwritten rules of sexual and relationship behaviour. They may engage in unacceptable behaviours in attempting to initiate romantic relationships and persist in pursuing a relationship even when it is very clear that the other person is not interested. This may lead to allegations of pestering, inappropriate physical contact or stalking.

People who have an ASD also have difficulties seeing situations from another person’s point of view. This can mean that they are unable to consider another person’s feelings, or they may think this person feels the same way as they do. For example, an individual with an ASD may have seen people kissing in the street; later they might approach someone they like, either someone known to them or a stranger, and kiss them. This might cause embarrassment or offence to the intended person, and their reaction may cause confusion and disappointment for the individual with autism. Perhaps they expected a more positive response: to be kissed or hugged back, as they saw happen with the couple on the street. Such examples demonstrate the complexities of socially appropriate behaviour. Individuals on the autism spectrum may need to be steered and supported by those around them to remember not to act on their impulses.

Several other characteristics of people with ASD interfere with the capacity to develop adult social relationships, which are necessary for developing sexual, intimate relationships.
Most significant is difficulty with social judgment, for example, missing nonverbal communication, poor eye contact, theory of mind (one’s ability to perceive how others think and feel, and how that relates to oneself) problems, and flexibility in responding to another person or situation. Lack of experience in peer relationships prevents the development of the usual ways through which adolescents learn about sexuality – from each other and from experimentation. Poor decision-making skills make it difficult to maintain the everyday details of a relationship, such as initiating dates, or remembering plans. Lack of flexibility and self-absorption, create significant areas of conflict in a potential relationship. Unregulated emotions, resulting in feelings that are too intense, or possibly misplaced, together, with a lack of awareness of the other’s response can prevent a relationship developing or quickly bring one to an end.

Many people with ASD have little self-awareness and do not understand their impact on others. People with ASD may have little knowledge about themselves. Part of what helps us create a sense of self is the ability to create an internal autobiography. People with ASD have difficulty in this area, as they frequently cannot describe their own emotions or are unaware of what they are feeling
or have difficulty controlling their emotional responses. As a result, many people with ASD lack the ability to understand themselves or respond to the social context around them. Self-advocacy, a crucial skill for maintaining one’s function in daily life, is something that can be very difficult for a person with ASD to learn. The ability to maintain personal safety without awareness of the environment or the behaviours of others can pose a significant danger.

People with ASD, either as a result of these difficulties or due to a true lack of social interest, can turn away from others into their own world. Self-absorption fosters another type of social disability. The need for aloneness or “down time” may be greater than the need to be with others, which may seriously jeopardize an attempt to relate to others in a more than superficial
manner. People with ASD frequently have little to no desire in sharing an all-consuming interest with others or attending to the interests of others, since there can be a lack of ability to detach from the area of interest without anxiety or distress.

The need for sameness and rigidity in daily routines may supersede one’s ability to flexibly respond to another person, for example, being unable to eat at another restaurant when only two specific restaurants are in that person’s repertoire.

Sensory sensitivities, such as the inability to tolerate touch or other physical sensations, sound sensitivities, or food texture issues can cause dating to be fraught with problems Such sensitivities can create intolerance of what may be considered part of the normal world. For example, sensitivity to sound may prevent someone with ASD from engaging in activities where airplanes may be heard overhead or babies may be heard crying. Sensitivity to touch can be especially difficult in relation to others, as those with ASD may not tolerate someone touching their skin or attempting to hug them. Heightened sensitivity may also affect the choice of clothes for someone with ASD, who may be un‐
able to wear clothes with sleeves or stripes made of particular materials,

Executive function impairments (impairments in decision-making skills, cognitive flexibility, impulse control, organizational skills, and planning) create another layer of social difficulty. Awareness of the passage of time may be compromised for someone with ASD and is an essential component of everyday function. Everyday memory problems or the ability to remember to plan and organize daily life activities can create social havoc. The ability to problem solve, make informed choices, or plan for the future becomes problematic.

All of these challenges are magnified when a person with ASD attempts to have an intimate emotional and perhaps sexual relationship. Intimacy is the sharing of emotional, cognitive, and physical aspects of oneself with those of another. A prerequisite for intimacy is the establishment of a firm sense of self-identity. Intimacy requires the flexibility to loosen one’s identity in order to feel the pleasure of merging with one’s partner in an emotional and physical connection. For all of the reasons above, a person with ASD may be unable to share with another or may be limited in his or her ability to do so.

There are various books which explain about forming relationships, for example the FPA book Talking together…about sex and relationships which describes how people make friends, become closer, become boyfriend and girlfriend, and eventually decide they would like to have sex with each other.

Fitzgerald, Harpur and Lawlor describe making friends at university, dating and how to be considerate towards other people’s relationships in their book Succeeding in college with Asperger syndrome. Luke Jackson provides some dating tips in his book, Freaks, geeks and Asperger syndrome, which have been suggested by his teenage sisters. There are also social skills or social groups in some countries which individuals with an ASD might like to attend.

People with Autistic Spectrum Disorder and Crime

People with autism spectrum disorder (ASD) may have characteristics that could make them both more likely, and less likely, to break the law. On the one hand, they may have trouble with aggression, controlling strong emotions, and understanding other people’s perspectives. They may have challenging behaviours that could attract police attention. However, they also tend to find rules helpful and follow them precisely , and laws are simply rules that they could be expected to follow.

 


Several research studies have found either no link between autism and violent crime, or could not reach a conclusion about a link. A Danish study found that people with Asperger’s Syndrome (a form of high-functioning autism) were no more likely than the general population to commit a crime; those with classic autism and “atypical autism” were less likely than other people to commit crimes.
Research on violent criminals with high-functioning ASD found that the offenders may have deficits in moral reasoning, understanding other people’s perspectives, and emotional control. These deficits could, potentially, reduce their responsibility for crimes they commit in some cases.

However, as the number of individuals with autism has dramatically increased in the last twenty years, so too have autistic defendants in criminal proceedings in proportion to the increase in overall numbers. Such cases are extremely challenging to the criminal court system because autistic individuals’ motivations, perceptions, and intentions are often difficult for courts to understand. Questions of mental capacity and criminal intent are particularly challenging. Communication difficulties and problems in recognising social signals may place people with ASD at a disadvantage when questioned by police. They may not be able to tell if an investigator is lying or manipulating them. As a result, they may make a false confession or fail to protect their legal rights.

Similarly, courts may fail to understand what prison sentences mean for autistic individuals. The issue of autism in criminal courts is likely to grow in significance as the large population of autistic children become adults. The kinds of criminal cases range from assault to murder and from charges related to child pornography to possession of weapons without license. Many of these criminal cases highlight the complex and disturbing ways in which criminal law is interfacing with the world of autism.
Despite the public interest in people with autism as criminals, they are more likely to be victims, according to experts. Children with disabilities are about three times more likely to be the victims of abuse or neglect than nondisabled children. Children with autism are bullied more often than other children, although they can occasionally be bullies themselves, according to research by the Interactive Autism Network.

Most of the legal contact that individuals with autism have is as victims.