Challenges of Aging Parents Living with Adult with Autism

By: Ms. Tanvi Pal

They say, “It isn’t a cake walk”! After all it’s living with Adults with Autism!

An adult, yes, an adult who might be 20-22-year-old but still would need a 24-hour caregiver to be safe.  A man/ A woman who just looks grown up but still is battling with limited speech, needs someone to make him/ her shower and dressed, who doesn’t understand exchange of money and still needs help to cross roads. Yes, it is an adult with autism.

Autism or Autism Spectrum Disorder (ASD) is a developmental disorder which hinders with communication, social behaviour, emotional well-being and cognitive capacity of individuals. Autism affects 1 out of 68 today! The range and severity of symptoms vary from individual to individual. Some common symptoms include impairment in communication, sensory sensitivities, seizure or sleep disorders, poor social relationships, obsessive interests and repetitive behaviours or actions. As the symptoms vary widely, there doesn’t exist one autism but many subtypes based on amalgamation of genetic and environmental factors. Some individuals with ASD may necessitate substantial support in their daily lives, while others may need a smaller amount of support and, in some cases, live totally independently.

Therefore, Individuals with autism live a much-restricted life in a cocoon away from their peers and struggle in terms of both education and employment. The dependency thus creates countless challenges for parents, family members or the caregivers. Many research studies also highlight that parents, family members or care-givers who were nurturing an autistic individual claimed higher level of worry, depression, anxiety and stress, and poorer quality of life.

Parents who continue to be primary care-givers till adulthood of children with autism have profound effect on themselves and handle adverse consequences, including:

Parents feel detached from their family:

As parents get engrossed in upbringing of children with autism they typically compromise in terms of social opportunities and obligations. Caregiving 24*7 makes them exhausted and they fight decreased time availability for self and others. Some parents reported social restrictions such as not being able to do enough for family and friends, less frequent involvement in festivities, activities and events, and feeling trapped due to parenting demands. As these children move towards adulthood, their management becomes more time-consuming and tiring.

Greater physical strength and extreme behavioural manifestations:

Autistic individuals show extreme behaviour patterns. They often make involuntary and loud noises, get into self-stimulatory behaviours such as hand flapping, hand-twirling etc., have violent out bursts or aggressive acts including self-harming as well as directed to others in form of kicking, punching, biting etc. They injure themselves many a time while in such temper tantrums. As they grow in age and walk towards adulthood, there is a shoot in physical strength as well. The management of violent outbursts and the extreme behaviours also becomes a challenge especially for aging parents who on the contrary are fighting with decreased physical strength. A mother of a 21-year-old autistic girl, shared that, “it’s like walking on egg shells all the time”. She also reported that management of violent out bursts often leads to emotional outbursts and mood swings for the person who is care-giving.

Society’s insensitivity towards them:

Society including extended families, relatives, neighbourhood and acquaintances fails to accept that an adult can have such extreme behaviour patterns. The exchange of glances and comments makes it clear how we lack awareness about disabilities and how the behaviour is misunderstood.  As parents it becomes difficult to explain people in public that why their 22-23-year old, starts undressing himself in the market, or lie down in middle of nowhere and start screaming, hitting or crying. Parents often get that embarrassed look from the societal groups around. They often hear statements such as, “why is he/she doing that, why does he/she act like that, why can’t he/she talk to us, why can’t he/she look us in the eye, what is wrong with that person?” Thus, aging parents who are already exhausted fighting with mid-life crisis, who have career, house and family to take care of, feel stigmatized by such misunderstood perceptions of others. A parent of 32-year-old son said, “Relatives just fail to understand, even if you try sharing some information about the problem. They are just reluctant to accept the truth but seem to be eagerly active in passing social judgements. Their prejudice fails to accept that adult children may have disabilities.”

They missed their typical way of life:

Aging parents often crave for normalcy of life. They are bound to live a restricted life. They cannot leave home, go out with friends or get into spontaneous activities; refraining them from any last-minute plan. With their own aging trajectory, they themselves face physical and mental health issues. In this process, their family life gets complicated too. Other children or even ailing partner feels neglected in the entire process of supporting adult with autism. As caregiver, they undergo developmental burden and thus many cases have reported high levels of anxiety, fear and worries. Many people have even reported comprising their own issues such as marital discord or family disharmony. But as a sigh of relief, constant support or an active role of siblings have reported to reduce burden on the caregivers.

Shift in Parent role:

There is a major shift in role as a parent of children/adolescents with ASD as compared to parent of an adult with ASD. In childhood and adolescence parents often prioritize navigating school-based services wherein they get individualised education programs (IEP’s), learning of self-help skills, basic academics, occupational and speech therapy while the priorities of parents of adults may include employment, transportation, and independent and/or group housing options. This shift in role occurs as a major challenge as parents also have to educate and update themselves consistently to provide best care to their children.

Future planning:

Constant worry about the future is one of the biggest challenge aging parents face.

The most intriguing question which bothers them is “what after us?”. They constantly worry about their children’s existence after them. They financially plan, budget and save for basic and implemental needs, and realistically assess how much the support may cost in the long run. This planning is important both for parents and the autistic child as the entire upbringing process is draining not only mentally but also financially.  Along with aging issues, another challenge is to look for organizations that are residential and promote the independence and focus on housing, jobs, provided in the most integrated setting appropriate to meet individual needs. It is very important to get them involved in age-appropriate activities and settings.

Care and management of autistic individuals today holds utmost importance. The best management practices for adults with autism would include age-appropriate treatment and vocational options, help with residential demands and consideration of social and financial factors. A parent of 27-year-old shared, “Other important factors in their management would be less and unforced communication. When working with adults on the autism spectrum, it is important to allow ample time when communicating. Also keeping sentences short and concise.”

Adults with autism undergo sensory overload from stimuli that most individuals would generally find comfortable. It is important to give them their personal space while avoiding lot of physical gestures and staying calm. They might end up in temper tantrums, but the best way to control it is not to panic and distracting them from the trigger especially when in public settings. It would always remain a greater challenge to take and manage autistic adults in public as any small instance can be upsetting and trigger their sensitivity.

Thus, even when they grow up, best way of dealing is to keep things consistent and not bring in multiple changes, the meal and hygiene habits as well as the personal belongings and relationships should be maintained in their familiar way.

Adults with Autism as well as the Aging parents demand a lot of attention in terms of research, social support and may be government policies. A lot of research or support system in terms of institutions are available for children or adolescents with autism, but a lot of contribution is yet to be made for adults with autism. It demands equal rights and nourishment as compared to children. Caregivers constantly contribute all their time and energy in the involvement of adults with autism whereby ignoring personal demands, needs and commitments. A healthy network and social support would definitely act as a backbone for them, to come out as a warrior in this journey of living with autism. So next time when you happen to come across any chid or adult with autism or any care giver, do let them outpour their heart as empathy costs nothing and the smiles on their faces will let you have a sound sleep!

Ms. Tanvi Pal

PGT Psychology and School Counsellor, Vantage Hall Girls Residential School, Dehradun
Ex-Case Manager, Autism Centre for Excellence, Gurugram