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In the face of a growing push by politicians and the DWP to claim that ADHD, autism, anxiety and depression are less likely to lead to significant additional costs, we asked our readers to tell us what additional spending they faced.

We had a huge number of responses covering a very wide variety of extra expenses.  We’ve quoted some of our readers below and, at the end of the article, there’s a list you can send to your MP if you wish.

As regular readers will know, Jean-André Prager, a member of the Timms review steering group, co-authored a recent report calling for drastic cuts to disability living allowance. He did so largely on the grounds that the “burden” of conditions like these “may fall primarily in the form of parental time, vigilance and complexity rather than direct expenditure.” 

In the face of the evidence from our readers about the real financial cost of these conditions, it is hard not to conclude that the Timms review has failed catastrophically in its selection process if people holding views like Prager’s were chosen to shape the future of PIP.

Travel costs

Additional travel costs are a huge issue for many of our readers living with ADHD, autism, anxiety or depression.

“I struggle to drive because of my anxiety and ADHD, and ADHD also makes it more difficult to use public transport, so have to pay for taxis a lot. I theoretically have access to Ring & Ride but there is never any availability and it does not work when you are attending hospital appointments when you don’t know how long you will have to wait to be seen.”

“I support an autistic friend who suffers from panic attacks, which are often triggered by pavement cyclists and scooterists. Additionally, she can't cope with crowds or loud noises, and gets triggered by crowded buses and people playing phones loudly. As a result, she often needs to use taxis in order to avoid busy streets and buses, especially at times when kids come out of school.”

“Cost to run a car because I need a safe space nearby to retreat when I am overwhelmed and having a meltdown. This happens almost every time I go anywhere where there are other people, and is guaranteed if the place I am going is a town or city. I have blacked out the windows of the back of the car so I can hide there and feel safe while I attempt to calm myself down.”

“Public transport is often next to impossible for me because of anxiety and struggles with time keeping (and finding bus timetables impossible to read) meaning i have to take a taxi most times i leave my house which becomes incredibly expensive!”

Food costs

Almost every aspect of food and shopping for it can lead to added costs, whether for home deliveries, ready meals, specialist diets or wasted food.

“My daughter has just turned 16 and is diagnosed with AuDHD [autism and ADHD]… I spend £25 per month on numerous vitamins and supplements, plus £100 per month on protein powders to try and plug in the gaps left by her restricted diet. Diet isn't just essential for growth, but also her ability to function. When she doesn't have adequate food and drink, she's dysregulated and her health needs increase. Then we have additional kitchen equipment such as a powerful blender (£100) to be able to make food at a consistency she can tolerate.”

“I have ADHD and autism, as well as a number of other mental health conditions … I am unable to cook for myself, so ready meals or takeaways are very common for meals which cost significantly more (not to mention the health implications which will have a direct cost on the NHS in the future). We also get food deliveries as my partner is keeping a full time job while caring for me, and finding time to shop is very difficult”

“My neurodivergence affects my eating patterns and the way I manage food. I experience difficulties that include food waste, particular eating styles and fixations on certain foods. These fixations can change, leaving me needing to purchase different foods. My eating patterns can also involve compulsive eating or periods when I do not eat. This makes managing food and avoiding waste more difficult.”

“Food wastage is a massive cost because of being unable to estimate how much food will be needed and being unable to keep track of use by dates.”

“As an adult who lives alone with ASD, depression, anxiety disorders, OCD, some of my costs are: … Food: £30 - £40 extra per week. Can't eat or drink normally, so groceries that I can eat cost substantially more. Food gets spoiled when I get distracted and forget to close the fridge/freezer which is often.”

“The first thing to say is that ASD rarely presents as the only condition. My daughter was also diagnosed with Dyspraxia and Chronic Anxiety. … Food - autism comes with food difficulties and that comes with extra costs. Limited range, texture, strong flavours, all have sensory impacts. The extra cost can be trying new foods endlessly in order to maintain weight and health. Vitamin supplements are needed. Specialist cutlery which is easier to hold.”

Clothing costs

Many autistic people have specific needs around clothing.  Washing clothes can be more expensive too.

“We do incur costs as she will only wear certain item of clothing so we need to purchase the same item in large volume and sizes. As you cant be certain the item will always be available.”

“Soft and tactile clothing - frequently more expensive as have to avoid cheap materials, nasty seams. Problems with zips and laces are common.”

“My 20 year old son has adhd and autism, he has long periods of very low mood with the occasional outburst of angry aggressive behaviour. … uses three towels when he is showering, wont reuse a towel- extra cost of laundry items, electricity etc changes his clothes throughout the day- if his sock gets wet, his t shirt sweaty etc, more so than the ordinary person- again more laundry costs.”

“Cost of additional laundry washes because you forgot about it the first 5 times”

Replacing damaged and lost items

Sensory distress and meltdowns can result in possessions needing to be replaced, whilst lack of focus can lead to many lost items.

“Hi, my teenage daughter has autism and also a high level of anxiety. There are definitely additional costs involved. … replacing broken items that were damaged during meltdowns”

“I care for my son who has autism and adhd diagnosed at age 11 and he’s now 21. … When he was younger the amount of things which got broken, televisions, devices, cupboard doors, holes punched in walls due to mainly his frustration and lack of impulse control have cost thousands to be fixed and after the third tv I couldn’t afford to replace any more.”

“My daughter is 32 and has severe Autism. The costs of raising an Autistic child can be extreme. My daughter has broken her Tablet, a television, soiled 4 carpets/linoleum beyond cleaning. She also broke her Ategi shared lives supporter's sofa. … She would also break ornaments and her Sister's toys.”

“My son has ADHD (diagnosed when he was 4) and trauma related mental health issues (he has lived with me under a kinship care arrangement since a young child). I have spent literally thousands of pounds to give him the support he needs, as well as on clothing and possessions that he has lost or damaged. I was constantly replacing the locks as he lost his keys regularly and then had a keysafe installed. Since he was 18 he has incurred costs through losing his phone or dropping it every few months, losing his wallet, driving licence and passport etc. All very expensive.”

Buying equipment to manage sensory needs

Headphones, earplugs, compression clothing and other sensory items can help make daily life more manageable, but come at a cost.

“We have also spent a considerable amount on items that help with emotional and sensory regulation. These include noise-cancelling headphones, ear defenders, sensory aids, fidget items, comfort items, weighted blankets, music subscriptions, toys, games and other resources that provide familiarity and comfort. These are not luxuries; they are sources of comfort and important tools for emotional and sensory regulation. They provide reassurance and help her regulate her emotions when she is distressed or overwhelmed. Finding what works often involves trial and error, meaning many items are purchased but prove unsuitable. Even when we find something that helps, it usually needs replacing over time due to wear and tear from frequent use.”

“Compression clothing tops worn during the day to lower my nervous system and help regulate my emotions aid focus and lighten anxiety. £50.00 each x 5 one a day for work partner washes twice a week to make them last. I need to buy these every year cost £250 annually.”

“Sensory wise I also need multiple duplicates of preferred fidgets and other items for sensory regulation that need replacing as they break.”

“I am autistic, and have anxiety and C-PTSD. … My extra costs are difficult to enumerate, but definitely exist. Sensory aids, music subscriptions I need to manage my anxiety and sensory sensitivity, noise cancelling headphones, for me my phone is an assistive technology”

“For my child we have had to buy and install a wall ladder exercise gym, buy stepping stones, mini trampoline, wobble board, crash mats, peanut balls and a scooter board amongst other P.E. type equipment you would normally only see in school or gym or physio, because if we didn’t give him easy access to these structured, safe ways to move, he ends up climbing and jumping off the furniture and hurting himself. Probably looking at least £1000 over the past couple of years and that’s with buying second hand where possible.”

Paying more for toiletries and cleaning products

Sensory sensitivities can mean paying more for particular cleaning products, toiletries or medication because alternatives cannot be tolerated.

“I cannot tolerate strong smells such as bleach or lavender so have to use unscented cleaning, laundry and bathing products. These come at a premium cost because they are usually only available as organic or handmade products.”

“My daughter has just turned 16 and is diagnosed with AuDHD. … She has extreme sensory needs which means she can't brush her teeth in the normal way. There's extra costs for specialist toothpastes, and toothbrushes etc. She can't use the shower, so products like FreshWipes to clean, and their hair wash caps don't come cheap. I had to buy a portable sink to try and aid hair washes.”

“Washing in certain type of washing brand that is natural extra cost is 40% more but I cannot stand the smell of anything other than two scents from one brand additional cost £150 per year.”

“I have ADHD and autism, as well as a number of other mental health conditions … I have SAD, and take vitamin D for it but struggle with tablets due to my autism, so pay out for more expensive spray versions. Equally, I cannot tolerate minty toothpaste so pay extra to have flavoured”

Late fees and subscriptions that are hard to cancel

Remembering a deadline is only part of the problem. Cancelling a subscription may require a phone call that someone finds impossible to make.

“I have frequent surprise 'ADHD taxes' in the form of forgetting to pay bills on time or forgetting to cancel free trials”

“ADHD and depression both make it difficult to access ways in which other people save money eg by phoning to cancel/haggle, by shopping around, by researching and using discount codes. We often forget to cancel subscriptions or memberships or find it hard to overcome the barriers to do so, or just end up letting insurance policies auto-renew.”

“I don't know about children, but the cost of having severe ADHD and autism as an adult encompasses the following: … 1. getting caught by online advertising campaigns where you sign up to a free trial and have to remember to cancel before they start taking money; 2. not keeping in touch with your payments and subscriptions, so you don't notice that money is being collected from your account … 7. Forgetting to continue with the course and apps and coaches that you've signed up for and forgetting that the payments are still coming out of your account”

“Due to ADHD, my husband regularly picks up parking fines from forgetting to input his license plate into shop parking validators or not understanding the parking restrictions.”

Help with cleaning and keeping a home manageable

Some readers pay for practical help because household tasks become overwhelming. Others need that help but cannot afford it.

“£70 cleaning help to maintain an environment at home that's not overwhelming”

“My son is 30 and receives from me, what the Government term "cost free" assistance. … I have to fund a house keeper for him to ensure he is eating, washing, etc and I carry out all his paperwork things and manage his money, for what that is worth.”

“As an adult who lives alone with ASD, depression, anxiety disorders, OCD, some of my costs are: … Home help / support worker: £25 per hour - can't afford what I really need. Cleaner (I do what can but I struggle to maintain reasonable hygienic standards): £20 per hour.”

Paying privately for ADHD diagnosis and medication

Adults and parents describe paying privately for diagnosis and medication.

“I had to pay privately for my ADHD diagnosis because at the time there was no NHS pathway to diagnosis in my area. Once I got the diagnosis I began paying for my medication, costing £140 per month, with twice yearly reviews costing £180. So far I have been paying this cost for 2 years. The NHS have since established an ADHD service in my area, and I am on a waiting list of unknown length before they can see me and take over prescribing my medication. Meanwhile I must continue to pay.”

“My son is 14 and has ADHD and learning difficulties. We had to pay for a private diagnosis. We have to pay for private prescriptions AND medication monthly.”

“My child is AuDHD and won't take tablets (not even the chewable ones). We have to pay a private health firm over £100 per month for liquid medication so he can manage in mainstream education. This was after an initial outlay of almost £1000 for 3 remote consultations and prescription charges for the failed medication attempts.”

Paying for home education

Some families have to pay for learning materials, online schooling and other resources because their child cannot attend a mainstream school.

“I am a carer for my daughter who was diagnosed Autistic at 14. She is now almost 20. I home educated from 13. … We use an on line school which has cost thousands of pounds. Then the cost of exams to take one GCSE cost £200. Access arrangement for a separate room due to sensory issues an extra £200 PER PAPER! Home invigilator a similar cost. So multiply that by the number of GCSE it’s thousands of pounds. Then A levels are even more expensive. Double the price for the exam itself. So we save the state the cost of educating her 6 years.”

“Because my son has Autism he was bullied at school by the very people who were meant to help him (SEND person and head Teacher) - as a result after seeing him physically being dragged about I removed and de registered him. We have to foot the whole bill for his education.”

“Writing as a parent of two autistic young people (one 18 years and ASD [autism spectrum disorder] -PDA [pathological demand avoidance], ADHD, partially deaf, one 14 years and ASD-PDA). … There is the cost of home education which I was forced into by the failure of the EHCP [education, health and care plan] /School/LA which took 10 years for them to admit and finally provide a full EOTAS [education otherwise than at school] package. But I still can't work because he cannot access any of it without my support, prompting, organisation etc i.e. my time.”

“My daughter has autism and is on a waitlist for an ADHD diagnosis, as requested by the autism specialist. She also suffers with anxiety and has school trauma because of the way she was treated. She has a PDA profile. … Firstly, I have to home educate because there are no suitable school places for my child where her needs would be met … This costs money. I have to pay for resources that actually suit her due to her PDA, I take her to groups when I can and days out that she is comfortable with when her anxiety is low enough. It all costs money. She is very creative which we use to our advantage as part of her learning, which isn’t cheap. The heating and energy bills also cost more because we’re at home a lot.”

Private therapy when suitable NHS support is unavailable

Adults and parents describe paying for therapy because appropriate support is unavailable or the wait is too long.

“I am autistic, and have anxiety and C-PTSD. … my CMHT [community mental health team] wouldn't treat me because I have "complex needs", so I've been paying for a weekly private therapist for more than 5 years”

“DLA for a child with autism pays for private therapy ongoing for severe OCD The waiting list under NHS is too long when a child and family are living with this condition (which often is a part of autism ).”

“Private mental health support: CAMHS [child and adolescent mental health services] discharged my child after four sessions because they were unable to meet their needs. We have had to pay for private clinical psychology support at £170 per hour. As my child cannot engage effectively with online therapy, we must attend appointments in person, adding taxi fares both ways because sensory overwhelm and anxiety can make public transport impossible.”

“I have ADHD and autism, as well as a number of other mental health conditions … I pay for private therapy as the therapy offered by the NHS was not sufficient, at the moment half of my PIP award per month goes to this. I was recommended to get another type of therapy on top of this but cannot afford that too”

Higher household bills from spending more time at home

Spending most of the day indoors means using heating, cooling and other household services for longer.

“I spend more money on heating my house during the winter and more money on electricity for an AC during the summer, because my son doesn’t go out due to his autism and ADHD.”

“Utilities and managing money are probably what applies to me most on the list, burnout means I have periods where I'm at home most of the time, barely going out once a week! I'm also a night owl so there's costs with bills there too. While the sense of money can fall out the window with my special interests which has caused debt in the past.”

Paying for someone to accompany a child or adult

Some children and adults cannot travel alone. This can mean paying for accompaniment, extra petrol or a parent losing earnings to provide support.

“My son is 25 and autistic. Most of his PIP go into personal assistant costs to escort him to his training and daycare locations, health appointments etc - he uses public transport so he does not use any of his money on taxis but he has been deemed unable to travel on his own.”

“For autism I would need to pay for someone to accompany me on any social outings as I find them so aversive (I mean activities where I would need to interact with anyone at all).”

“Transport: My young person needs someone to accompany them on journeys that others of the same age manage independently. We sometimes have to use taxis, but they cannot travel in them alone, due to sensory overwhelm, anxiety and difficulties navigating routes on foot or using public transport.”

How readers feel about the suggestion of no extra costs

Readers expressed anger, disbelief and fear about the claims that these conditions do not incur additional costs.

“I am an older female diagnosed as Autistic 10 years ago and with ADHD 4 years ago so can state as fact that I have spent my life masking and trying to do the right thing until the diagnoses made everything make sense for me. It makes me SO angry when I read about blanket, sweeping statements that costs are not as relevant for these conditions.”

“In reply to your article regarding Anxiety & Depression being "cost free" conditions I would like to comment; The severity of my Wife`s condition meant I had to give up work, in 2021, so I could be at home with her, all the time, to give her the support she needs & to prevent another "breakdown" & all that goes with it. We survive on "next to nothing" as it is, receiving Universal Credit & Personal Independence Payments only. Should ANYTHING change that reduces ANYTHING We receive, we would simply not be able to make ends meet; it is as simple as that.”

“My daughter has just turned 16 and is diagnosed with AuDHD. Her needs evolve constantly so we need the flexibility to respond instantly, we can't be waiting for slow government schemes. … I've had no option other than to give up work and care for her after her mainstream school experience left her so traumatised and unwell that she could no longer attend. Three years later, we still don't have the correct health care because CAMHS are shockingly bad with neurodivergent conditions. If we didn't have DLA, how would I pay for what she needs when the system has forced me to give up work? It's ignorant and offensive to suggest it's just parents time as if parents are nothing. People are deluded and shouldn't be in their roles if they think such things.”

“As the parent of a neurodivergent young person who is nearly 18, I can say from personal experience that the idea that autism and related conditions are somehow “cost-free” is completely detached from reality. My child is cognitively able, but their autism, co-occurring conditions and communication difficulties affect almost every aspect of daily life. They have needed substantial support since birth. Many of the additional costs associated with their needs are not obvious to other people, but they are very real and accumulate over a lifetime. … A condition is not “cost-free” simply because its additional costs are hidden, spread across everyday life, or absorbed by the family.”

List to send to your MP

This is a list of some of the extra costs that people living with autism, ADHD, depression and anxiety have told Benefits and Work they face.

• Ready meals and takeaways when planning, preparing and cooking food are unmanageable.
• Grocery delivery charges when anxiety or sensory overload prevents shopping in person.
• Food wasted because it is forgotten, use-by dates are missed or food preferences change.
• Particular foods and familiar brands that meet sensory needs, even when cheaper alternatives are available.
• More expensive clothing and shoes because of sensitivities to fabrics, seams, fit or noise.
• Replacing clothes, bedding and household items damaged during sensory distress or meltdowns.
• Extra laundry, detergent and electricity because of frequent changes of clothing and towels.
• Noise-cancelling headphones, earplugs, compression clothing, fidgets and other sensory equipment.
• More expensive cleaning products, toiletries and laundry products because particular scents, flavours or textures cannot be tolerated.
• Taxis or running a car when public transport cannot be managed, including having a safe place to retreat during sensory overload.
• Replacing lost belongings, buying tracking devices and keeping duplicate items in different places.
• Late-payment fees, forgotten subscriptions and missed savings because of difficulties remembering, organising or making phone calls.
• Parking fines after forgetting to register a vehicle or having difficulty understanding restrictions.
• Cleaning and practical help when household tasks become overwhelming.
• Private ADHD assessments and medication when NHS diagnosis or prescribing is unavailable or involves a long wait.
• Home education materials, online schooling and other learning resources when a suitable school is unavailable.
• Specialist activities, holiday provision and equipment for safe play.
• Private therapy when appropriate NHS support is unavailable or the wait is too long.
• Higher housing costs to find somewhere quiet enough to live.
• Higher heating, cooling and other household bills because anxiety means spending more time at home.
• Paid accompaniment and extra travel costs when a child or adult cannot go out alone. Parents and partners also described losing earnings to provide support.

Some readers also described equipment or help they need but cannot afford. Going without something does not mean the need or its cost has disappeared.

For further information, see the Benefits and Work article:  

Readers reveal the real extra costs of ADHD, autism, anxiety and depression