Yesterday we wrote about the history of autism, and if you were born in 1950s and 1960s showing signs of autism, your parents might have been accused of cold parenting because of Leo Kanner’s Refrigeration Mother Theory. Diagnosis of autism is still problematic, even in these day, and some people do not get diagnosed until late stages of their lives, if diagnosed at all. It is quite possible for people to go through their whole life feeling that they do not quite fit in, but not get diagnosed. Some will learn to cope, get married, have children and build a career, whilst others will become isolated and struggle.
Diagnosis can be difficult but it can be a really positive step. A lot of adults say their diagnosis has helped them to understand why they find certain things difficult, and also why they are especially good at some things. These are the things to look out for:
Typical infants are social by nature and will look at faces, turn to voices, grasp fingers, whilst children with autism will have difficulty engaging in the everyday interactions. As they reach 8-10 months of age, autistic children will fail to respond to their name, and have a reduced interest in people. They will not be interested in playing social games and rather play alone.
Both children and adults struggle to interpret thoughts and feelings of other people, and without the ability to interpret gestures, the world can seem bewildering. In the same manner, seeing things from another person’s perspective can be problematic, therefore understating another person’s actions might be challenging.
It is also common for people with autism to have difficulty controlling their feelings, therefore one may experience behaviours such as crying or unexpected outbursts in inappropriate situations. The tendency to “lose control” may be particularly pronounced in unfamiliar, overwhelming or frustrating situations. Frustration can also result in self-injurious behaviours such as head banging, hair pulling or self-biting.
Children with autism tend to be delayed in babbling and speaking and learning to use gestures. With therapy, however, most people with autism do learn to use spoken language and all can learn to communicate.
Many nonverbal or nearly nonverbal children and adults learn to use communication systems such as pictures, sign language, electronic word processors or even speech-generating devices. When language begins to develop, the person with autism may use speech in unusual ways. Some have difficulty combining words into meaningful sentences. They may speak only single words or repeat the same phrase over and over. Some go through a stage where they repeat what they hear verbatim (echolalia).
Some mildly affected children exhibit only slight delays in language or even develop precocious language and unusually large vocabularies – yet have difficulty sustaining a conversation. Some children and adults with autism tend to carry on monologues on a favorite subject, giving others little chance to comment. In other words, the ordinary “give and take” of conversation proves difficult. Some children with ASD with superior language skills tend to speak like little professors, failing to pick up on the “kid-speak” that’s common among their peers.
Another common difficulty is the inability to understand body language, tone of voice and expressions that aren’t meant to be taken literally. For example, even an adult with autism might interpret a sarcastic “Oh, that's just great!” as meaning it really is great.
Conversely, someone affected by autism may not exhibit typical body language. Facial expressions, movements and gestures may not match what they are saying. Their tone of voice may fail to reflect their feelings. Some use a high-pitched sing-song or a flat, robot-like voice. This can make it difficult for others know what they want and need. This failed communication, in turn, can lead to frustration and inappropriate behavior (such as screaming or grabbing) on the part of the person with autism. Fortunately, there are proven methods for helping children and adults with autism learn better ways to express their needs. As the person with autism learns to communicate what he or she wants, challenging behaviors often subside.
Repetitive behaviours are another common symptom of autism, and it may include hand-flapping, rocking, jumping and twirling, arranging and re-arranging objects, repeating sounds and words. This tendency to engage in a restricted range of activities can be seen in adults who insist in having objects in a fixed order or place, and if anyone disrupts the order, it can be very upsetting. Alongside this, a routine and consistency of daily activities can be demanded by a person with autism, and changes can be very upsetting and stressful, and even cause outbursts.
Repetitive behaviors can take the form of intense preoccupations, or obsessions. These extreme interests can prove all the more unusual for their content (e.g. fans, vacuum cleaners or toilets) or depth of knowledge (e.g. knowing and repeating astonishingly detailed information about Thomas the Tank Engine or astronomy). Older children and adults with autism may develop tremendous interest in numbers, symbols, dates or science topics.
Anxiety is a real difficulty for many adults with autism or Asperger syndrome. It can affect a person psychologically and physically. Click here to read about the different ways you can manage anxiety, from keeping a diary to learning relaxation techniques and getting support from others in a similar situation.
There are certain medical conditions that are associated with autism like: genetic disorders that affect brain development (Fragile X syndrome, Angelman syndrome, tuberous sclerosis and chromosome 15 duplication syndrome and other single-gene and chromosomal disorders), GI disorders, seizures (occurs in 39% of autistic people), sleep dysfunction, sensory processing problems, pica (tendency to eat things that are not food).
Having a diagnosis also means you can get easier access to support and benefits. However, the process of getting a diagnosis can be difficult for adults. The usual way to get a formal diagnosis is to go to your GP and ask for a referral to a psychiatrist or clinical psychologist, preferably one with experience of diagnosing autism. When visiting your GP to discuss autism, make sure this is the only thing you are seeing your doctor about. If you try to drop it into a consultation about another subject, they may not address it fully. A good way to bring up the subject is to mention that you have been reading about autism or Asperger syndrome, or that you have been in touch with the NAS.
Some people are happy with self-diagnosis and decide not to ask for a formal one. For those that do want a diagnosis, there are various benefits like understanding yourself and the reasons why you have been having difficulties, but also for other people to understand you which might make it easier for them to empathise. You might find it easier to make the decision of whether to get diagnosed by reading about other people's stories.
Adults with ASD may be able to access local autism support services, like the NAS Herefordshire. The healthcare professionals who diagnose you with ASD should be able to provide more information and advice about the care and support services available to you.
Examples of programmes that may be available in your local area include:
The best way to get help from your local authority is to ask for a care and support needs assessment. You can do this by contacting the local authority adult social services department. When you get assessed, as a minimum you may be given information and signposting to other services, and ways that you might find funding to pay for them, however, if your needs meet the national eligibility criteria, your local authority will have to meet these needs.
Local authorities must consider whether the person’s needs:
- arise from or are related to a physical or mental impairment or illness
- make them unable to achieve two or more specified outcomes
- as a result of being unable to meet these outcomes, there is likely to be a significant impact on the adult’s wellbeing
An adult’s needs are only eligible where they meet all three of these conditions.
The local authority will involve you throughout the assessment to identify what your needs are and how these impact on your wellbeing. They will also discuss with you how you wish to live your life and whether there are certain aims you would like to achieve but you are unable to do so because of your care and support needs.
The assessment will start to consider how your care needs might be met. This could include identifying how preventative services like simple aids (such as devices to open jars and tins more easily), adaptations to your home (such as handrails) or information about support available in the community might meet your need. It will also identify if you have a higher level of need where you may need help in your own home or care in a care home.
The assessment should be carried out in a way that ensures your involvement and that takes the right amount of time to capture all of your needs.
If you have a friend or family member looking after you as an unpaid carer, they can have a carer’s assessment to see if they need support to carry on their caring role. The local authority must give you a copy of your needs assessment or carer’s assessment.
Adults diagnosed with ASD can also claim some benefits, such as the Personal Independence Payment (PIP). This is the new benefit replacing Disability Living Allowance (DLA) for people with a disability who are aged 16 to 64.
For more information about benefits for adults with autism on The National Autistic Society website, or you can visit GOV.UK to read more about benefits.
Adults with ASD can live in all types of housing. Some people may be suited to a residential care home, while others may prefer to live on their own and receive home support. Some people with ASD live completely independently.
Supported living can work very well for some adults with ASD, because it means they can choose a place to live in the community, either alone or with other people, with the support they need. They may need 24-hour care (like Live-in care with Kemble), or they may only need help with important tasks for a couple of hours each week (Visiting Support with Kemble).
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