The National Autistic Society (UK) publish a quarterly magazine for members, Your Autism, with up-to-date information and guidance. A section in the magazine is for Readers to the Rescue, where a reader can ask a question of the wider reader community to help them specifically. With the experience I have gained over the years in supporting or son who has severe autism (as part of multiple and complex disabilities) I offer my take on the question being asked. The responses I set out below are those answers I have had published in the magazine.
YOUR AUTISM – WINTER 2023
Q. I live in a rural bungalow and it was quiet and peaceful until a new neighbour moved in two years ago. I have been kept awake with yelling and banging at all hours and his washing machine on spin cycle at 4am. I have also been woken by vile verbal abuse. He keeps harassing me and offering unwanted gifts and yet all I want is to be left alone. Because of his disabilities, the seems to be little that can be done, yet it has a great effect on my wellbeing. Can anyone offer advice?
My Response. This can be a nightmare situation, but one I have found is best addressed directly, but also with empathy. Can you build a relationship with your neighbour, based upon understanding of each of your challenges and preferences? You explain that he has disabilities, but what are they, and how do they impact his life? In the same way, you can explain how the noise and disturbance impact yours. Through an understanding conversation – in my experience – you may be able to develop some ground rules.
If he wants to bring you something, or just call on you, agree when you would be willing to entertain that so he has boundaries to work to, for example.
The machine noise through the night may be due to a cheaper energy tariff, which may be essential to use. It may not, but he just doesn’t understand the impact the noise is having on you. Through your conversations, you could suggest a better time when it would be less of an irritant.
There are of course, more formal channels you could take, by approaching the environmental health department regarding noise disturbance and a solicitor’s involvement to caution against unwanted contact.
YOUR AUTISM – SPRING 2023
Q. I was diagnosed as autistic (with ADHD traits) at 38. I have a history of depression and anxiety. I have struggled for so long with keeping my home clean and uncluttered. I am a huge procrastinator, have very low motivation and, if I do actually manage to do some housework, I get distracted or can’t do it for long. I get overwhelmed by everything that needs to be done. Any advice would be much appreciated.
My Response. I use the ‘five-minute’ rule. Break everything down into bite-sized activities taking no more than five minutes. Focus on one room until you get it how you want it to look and use that as a model to help motivate you to work on another room. Make sure you stop at five minutes, and only exceed five minutes when you genuinely feel motivated to do so. Set out a schedule so that these bite-sized actions get established as part of your routine. Good luck.
YOUR AUTISM – WINTER 2022
Q. I am finding it difficult when my child has a meltdown outside. She runs away, screams and tries to hit me if I go near. I feel so useless and stressed.
My Response. I understand how you feel as I have been there with our son. Parenting a child with any additional need is a challenge and you have every right to feel frustrated and doubt. There is a process of managing meltdowns developed by Deborah Lipsky and Will Richards. It’s the S.C.A.R.E.D. model in their book Managing meltdowns.
S=Safe: When your daughter goes into meltdown, it is essential that you ensure she is safe.
C=Calm: Keep calm in order to take whatever steps are needed. Your language must be calm and direct.
A=Affirmation: Reassure your daughter that you understand her distress and you are doing something to make it better for her.
R=Routine: Encourage your daughter to engage in her familiar routines. An autistic person will feel calmer in a familiar environment or routine. In our son’s case, I used headphones to play him his favourite music.
E=Empathy: You need to understand the situation from your daughter’s perspective. Seek to understand why she has gone into meltdown. It is usually a sensory overload of some description.
D=Develop: an intervention strategy. Meltdowns will happen. Prepare yourself and your daughter for the next one. Do you understand what the triggers are? And what routines ease her anxieties? I found this model a great help. Meltdowns happen less frequently as we have a process to resolve the situation quickly.
YOUR AUTISM – AUTUMN 2022
Q. How can you negotiate the benefits system on behalf of your autistic adult child? My son has burnout and refuses to engage with the process.
My Response. Society and the benefits process have a belief that, once you reach 18, you can manage your own affairs. Far from it. As your child moves into adulthood, you have to find a way to support them. It’s not easy. The simple fact that you want to act for your son is met with mistrust.
Our experience has been the same as for your son. Initially, talk to your local carer’s support group. They are often linked to an understanding solicitor, who can advise on what benefits your son would be entitled to and guide you through the application process.
Look into being registered with your local authority’s adult care department, and have a full needs assessment for your son, as well as a carer’s assessment. You should also have a local NHS Community Team for Learning Disabilities. Make use of these organisations, as they often have knowledgeable and sympathetic people who will support you and your son.
Have you discussed power of attorney with a solicitor? This will give you the legal right to act on your son’s behalf. If your son receives some benefits from his childhood, you may already be regarded by the Department for Work and Pensions as his ‘appointee’.
Before meetings, try to call ahead and explain your son’s position and request flexibility. Will they allow an advocate to accompany you? Having someone at your side can remove any doubt of you ‘making it up’, which is always a fundamental fear of benefits agencies.
YOUR AUTISM – SUMMER 2022
Q. How can I find an autism-friendly dentist in my area and make visiting the dentist easier for my child?
My Response. I spoke to parents and teachers at the special needs school my son attended, and I had to talk to several dentists until I found one willing to work with me.
Use photographs and talk to your child about the process. Work with your dentist to allow you and your child to sit in the waiting room, and then leave again, to get used to the environment. Do this several times. Allow your child to go into the surgery and watch while you are having your own dental work done. Work with your dentist to explain about ‘waiting time’. Our son has a meltdown if he’s waiting longer that a few minutes.
Depending upon your child’s sensitivities, consider playing music to help keep them calm while being treated. Ask the dentist initially to just quickly look in your child’s mouth without doing any work. Practice at home by putting a toothbrush in your child’s mouth. Anything you can do to expose your child to that experience in a safe environment will help.
There have been times when our son will just not open his mouth, and it is important to leave it. If they have a bad experience, it will be so much more difficult. My son is 35 now, and we still go through similar processes. He does cooperate with the dentist, and their relationship has developed over the years.
YOUR AUTISM – SPRING 2022
Q. Have you dealt with receiving a late (adult) diagnosis of autism – have you told work colleagues? The reason I’m considering this is because I feel the need to explain why I can be inflexible. If I have to cover someone else’s work, it can be really stressful because if I don’t do something routinely, I struggle. But I don’t particularly get on with most of my work colleagues – and I cannot stop myself from thinking people will see autism as a weakness.
My Response. Many organisations have a disabled employees’ network (DEN) that works to network with other companies to establish best practice in creating an inclusive and accessible workplace. The DEN is a confidential group of fellow employees who you can approach and talk with about your condition and concerns. At the very least, I would suggest you talk with your Human Resources department, as an employer is also required to consider ‘reasonable adjustments’ to help an employee complete their duties. In your case, this could be, for example, a quiet room to work in if needed, noise-blocking headphones, anti-glare computer screen, and so on.
Before retiring, I was a chairperson of my company’s DEN and one of the issues I found in trying to understand the level of disability in the organisation was that many employees felt just as you do. They worried about the consequences from the employer and colleagues, irrespective of what protection the law offers them.
I am the father of a young man who has multiple and complex disabilities, including autism. I could not work overtime, I could not change my working hours, and demands placed upon me that challenged these requirements raised my levels of anxiety, knowing that I had to put my son’s care first. I did not want to explain why I was inflexible as I felt it private. In time, however, I began to confide in colleagues. Eventually, I went to our HR department and my line manager to explain. I was fortunate in that those I opened up to respect my position, and work became much easier.
I hope you find something in what I have said that will give you confidence to make a decision you feel comfortable with.