Figure 1: Loud noises causing a sensory overload
A 10-year-old boy, AB, had an accident in March 2003 that resulted in the total loss of sight in the right eye and a detached retina in his left. A vitrectomy was performed on the left eye with the vitreous humour being replaced by silicone oil and laser surgery carried out to repair the retina.
I was asked by the paediatric consultant to go and discuss with the parents, while he was on the ward awaiting further surgery on his left eye to remove the oil, the options regarding the dispensing of spectacles.
On entering the wardroom, AB was watching Thomas the Tank Engine on TV. The lighting levels in the room were low. I introduced myself to the parents and ignored the patient.
I discussed the options post-op. He was not reading or doing anything close at the time, so we considered single vision to be the best option with bifocals and progressive lenses a possibility for the future. His expected prescription was going to be +16.00DS. I had taken up some lenticular lenses to show the parents what they would look like.
After about 15 minutes, AB got curious with me being in the room and came over to me. I was asked to measure him for some new spectacles prior to him being operated on to remove the oil. On this occasion he was in theatre as, at the time, the only way to refract and dispense him was while he was under a general anaesthetic. I had to scrub up and wear theatre scrubs.
I dispensed him a pair of Harry Potter spectacles with 42mm lenticular lenses in September 2003. Both parents and I were not sure how he would react to spectacles as he had a reputation for kicking, punching and biting carers as he could not comprehend what was happening to him. He had been effectively blind for six months.
To quote his mother on putting his spectacles on for the first time: ‘He was just so excited and beside himself, clapping with amazement, joy and excitement'. For a lad with complex disabilities and non-verbal, being blind was horrendous for him, so to get something back was just fantastic.
We soon changed from single vision to bifocals as he was struggling to look at the pictures in his Thomas the Tank Engine books. He was moving his spectacles to get best vision. Again, we were worried how he would adapt to them. This was unfounded. Unfortunately, due to his needs, he frequently broke his frames, so we always had spares in place to ensure he was never without. He was also photophobic, so tinted spectacles were supplied.
As trust was built between him, the consultant and myself, he no longer needed an anaesthetic to be refracted and dispensed. Mum always contacted me prior to coming to the hospital, so I could make sure of my availability. We always tried to keep to the same frame, however, as he grew it was getting harder to find suitable sized frames that would take his lenses.
Once a frame was found, I bought in 20 specifically for him so we could easily swap the lenses over when the frame broke and continuity of style reduced the risk of stress due to change.
His PD ended up at 70mm and he required a minimum of a 58-eye frame. This became a problem with the thickness and weight of the lenses (+12.00D). We now considered progressive lenses as they could be made in a 1.74 material and he adapted very well.
Due to his complex needs he always had two pairs clear and one pair of sunglasses. He also hated water in his eyes when taking a shower, so a pair of swimming goggles were supplied.
When the new hospital was built his parents came in and took some photos of where everything was and who he would be seeing, a picture book was made to avoid him getting anxious at the time of appointment. He was always glad to see me and on arrival always used two hands to shake mine, and nearly always he wanted to kiss the back of my hand.
For a hospital-based dispensing optician the dispensing itself was not that remarkable in terms of lenses and frames, however the communication needs with both AB and the parents were very challenging in order to assuage their concerns.
If a child or an adult is non-verbal that does not mean they do not understand, I always tell them what I am doing before doing it and ask permission to do it and I would get a thumbs up.
Remember autistic children can:
- Find it hard to communicate and interact with other people
- Find it hard to understand how other people think or feel
- Find things like bright lights or loud noises overwhelming, stressful or uncomfortable
- Take longer to process and understand information
- Do or think the same things over and over
- Get anxious or upset about unfamiliar situations and social events1
One Saturday evening AB clearly demonstrated this anxiety when new caring staff started work at the residential home where he lived. He was upset at the staff and was hitting the side of his face and bent his spectacles out of shape. His mother got a call the following morning to say the lens had fallen out and was probably down the toilet.
When asked what they were doing about it the carer replied: ‘He’ll be okay without.’ When challenged they said that they could pop to the local opticians and get a new one clearly ignorant of the need for +12.00D 1.74 progressives and the time and cost involved.
Fortunately, AB’s mother had spares at home to take in for him, and I was able to order another pair to replace the back-up.
I supplied AB with dozens of pairs of spectacles over the years. Among the hundreds of patients, often with very severe disabilities and/or disfigurement, that I dispensed at Manchester Royal Eye Hospital, patient AB sticks in my memory as a job well done.
It is incredibly satisfying to build up a rapport with a patient and be able to move from a position where we were measuring back vertex distance using callipers under general anaesthetic to a place where AB was genuinely pleased to see me and dispensing him became easy, providing his special individual needs were kept in mind at all times.
In promoting dignity and rights we must, as eye care professionals (ECPs), empower the child to make an informed choice where possible. We must ensure that we obtain consent before dispensing them. A simple question like ‘can I put this ruler on your head’ will suffice.
Carers, patients and colleagues must know what to do in an emergency, and how to raise concerns and if possible ensure privacy and dignity in the practice. These align with the GOC standards of practice for optometrists and dispensing opticians (1, 3, 4, 10 and 11).2
When dispensing patients with autism spectrum disorder (ASD) avoid using slang and idioms, for instance, those of us who are neurotypical may tell someone to pull their socks up, meaning that they should start working or studying harder because they have been lazy or careless. To a patient with ASD they may give a literal answer that their socks are already pulled up.
As dispensing opticians we have all seen a child with sensory overload who loses control. This can be verbal (crying, shouting, screaming) or physical (kicking, biting, lashing out), or both.
These are very intense and exhausting experiences, these meltdowns in children are often mistaken for temper tantrums with parents and their autistic children often receiving hurtful comments and judgmental stares from less understanding members of the public. In this particular case study the reactions were physical to himself and the carers.
Further discussion
ASD is characterised by deficits in social communication and the presence of restricted, repetitive behaviours or interests. It is a neurodevelopmental disability caused by differences in the brain and how the brain is wired. The worldwide prevalence of ASD is around 1%3 meaning most full-time ECPs will see an autistic patient most weeks in practice.
It is incumbent upon all ECPs to have a good understanding of the more common disabilities that patients are likely to present with and be able to adapt their professional practice accordingly. It is important to recognise that ASD really is a broad spectrum, ranging from high functioning individuals like BBC nature presenter and National Autistic Society Ambassador, Chris Packham CBE, through to patient AB in our case study, and beyond.
This means that every person living with autism is different. According to Chris Packham: ‘The greatest discomfort for autistic people can be the social one. For me, I was confused by the way people behaved.’
Autism combined with average or above average intelligence was formerly known as Asperger’s syndrome. People with Asperger’s do not have the same learning disabilities that many people with autism have, however they are likely to have specific learning difficulties such as dyslexia and other conditions such as attention deficit hyperactivity disorder (ADHD), anxiety, depression and epilepsy and may therefore require additional support in an educational or work environment.
People with ASD often have restricted or repetitive behaviours or interests, and are likely to have problems with social communication and interaction. People with ASD may also have different ways of learning, moving or paying attention. It is important to note that some people without ASD might also have some of these symptoms, but for people with ASD, these characteristics can make life very challenging.
Social communication and social interaction skills can be very challenging for people with ASD. Characteristics relating to ASD can include:4
- Avoiding or not maintaining eye contact
- Not responding to name by nine months of age
- Lack of facial expressions like happy, sad, angry and surprised by nine months of age
- Not playing simple interactive games by 12 months of age
- Using few or no gestures (eg waving) by 12 months of age
- Not sharing interests with others by 15 months of age (eg showing you a toy they like)
- Not pointing to show you something interesting by 18 months of age
- Not noticing when others are hurt or upset by two years of age
- Not noticing other children or joining them in play by three years of age
- Not play acting (eg pretending to be a doctor or superhero), during play by four years of age
- Not singing, dancing or acting by 60 months of age.
People with ASD have behaviours or interests that can seem unusual. These behaviours or interests set ASD apart from conditions defined by problems with social communication and interaction only. Restricted or repetitive behaviours and interests related to ASD can include:4
- Lines up toys or other objects and gets upset when order is changed
- Repeats words or phrases over and over (called echolalia)
- Plays with toys the same way every time
- Is focused on parts of objects (eg wheels)
- Gets upset by minor changes
- Has obsessive interests
- Must follow certain routines
- Flaps hands, rocks body or spins self in circles
- Has unusual reactions to the way things sound, smell, taste, look or feel
Most people with ASD have other related characteristics. These may include:4
- Delayed language skills
- Delayed movement skills
- Delayed cognitive or learning skills
- Hyperactive, impulsive, and/or inattentive behaviour
- Epilepsy or seizure disorder
- Unusual eating and sleeping habits
- Gastrointestinal issues (eg constipation)
- Unusual mood or emotional reactions
- Anxiety, stress or excessive worry
- Lack of fear or more fear than expected
It is important to note that children with ASD may not have all or any of the behaviours listed as examples here. ECPs can adapt their practice to be more welcoming and accommodating of the needs of people with ASD, particularly children.
It is often helpful, for example, to allow children with ASD to visit the practice in advance at a quiet time to familiarise themselves with the surroundings and the staff, and it is worth considering opening early or late so the patient is the only person being seen at that time and does not need to interact socially with others.
Be mindful that this could also be seen as a safeguarding issue. If the ECP is staying late, they should also have a chaperone as they are dealing with a vulnerable person. Produce a picture book of the journey. If possible appoint a member of staff to be an autistic champion.
The situation towards the end of the case where a carer would have been comfortable with the child not having spectacles at all when the lens fell out, also highlights the need for rigorous safeguarding of the rights of disabled patients to clear vision and being alert to any action that might be considered as abuse or negligence even if borne out of ignorance.
Stephen Golding BSc FBDO (Hons) LVA is a locum dispensing and low vision optician and former senior dispensing optician at Manchester Royal Eye Hospital for over 20 years. An ABDO practical examiner since 1995 he has served on several ABDO committees regionally and nationally. In 2006 Stephen was winner of the Optician Outstanding Dispensing Optician of the year and he has been selected as volunteer dispensing optician at three Commonwealth Games. He has authored several CET / CPD articles on low vision, paediatric and general ophthalmic dispensing.
References
- NHS, ‘Autism,’ [Online]. Available: https://www.nhs.uk/conditions/autism/what-is-autism/. [Accessed 11 November 2023].
- General Optical Council. Standards of practice for optometrists and dispensing opticians. London. General Optical Council. 2016.
- Talantseva O, Romanova RS, Shurdova EM, Dolgotukova TA, et al. The global prevalence of autism spectrum disorder: A three-level meta-analysis. Front Psychiatry. 2023;14. https://doi.org/10.3389/fpsyt.2023.1071181
- Centers for Disease Control and Prevention. Autism Spectrum Disorder (ASD) Signs and Symptoms. Available from: https://www.cdc.gov/ncbddd/autism/signs.html