{"id":468276,"date":"2026-02-14T13:35:13","date_gmt":"2026-02-14T13:35:13","guid":{"rendered":"https:\/\/www.newsbeep.com\/us\/468276\/"},"modified":"2026-02-14T13:35:13","modified_gmt":"2026-02-14T13:35:13","slug":"i-thought-my-22-year-old-son-had-autism-then-he-died-18-months-later-this-was-how-his-behaviour-changed-and-the-rare-disease-that-killed-him","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/us\/468276\/","title":{"rendered":"I thought my 22-year-old son had autism… then he died 18 months later. This was how his behaviour changed – and the rare disease that killed him"},"content":{"rendered":"

Deep down, Sam Fairbairn knew her son, Andre, was about to receive a devastating diagnosis as they sat before a consultant neurologist.<\/p>\n

Over the previous two years, her young son\u2019s \u00adbehaviour had undergone a dramatic decline, with doctors initially suspecting autism may be the cause.<\/p>\n

But the agonising demise in his health that had led to this moment made what followed no less shocking.<\/p>\n

Andre had frontotemporal dementia (FTD), they were told, a form of the disease caused by a gene mutation that led to a build up of toxic proteins in his brain. Unlike Alzheimer\u2019s, it tends to affect sufferers\u2019 behaviour and language first, rather than their memory. And, cruelly, it is early onset, typically beginning between the ages of 45 and 65.<\/p>\n

But Andre, who loved music and motor racing and watching Peaky Blinders<\/a> with his mum, was just 22.<\/p>\n

\u2018We were told if he lived to 30, he\u2019d be lucky,\u2019 recalls<\/a> Sam of that devastating meeting in June 2024.<\/p>\n

By this stage, her son was too ill to understand the diagnosis. \u2018But I cried, in a daze, heartbroken, trying to process what I\u2019d been told before going home and making the phone calls to tell family that my son Andre had dementia. It felt surreal.\u2019<\/p>\n

Andre died in December, aged just 24. Sam\u2019s grief is understandably still mixed with shock. \u2018I feel I\u2019m on the outside, looking at myself,\u2019 she says. \u2018I sit on my phone and go through endless photos and videos of him. I\u2019m overwhelmed.\u2019<\/p>\n

\"Andre <\/p>\n

Andre loved music, motor racing and watching Peaky Blinders with his mum, Sam. He died aged just 24 after receiving a devastating diagnosis<\/p>\n

Before Andre died, Sam, 49, made the decision to donate her son\u2019s brain for research to Addenbrooke\u2019s Hospital in Cambridge, whose \u00adspecialist Memory Clinic he was treated at. \u2018If it helps one family get an extra few years with their loved one it will have been worth it.\u2019<\/p>\n

Speaking to the Mail from her home in Dereham, Norfolk, where she lives with her husband Alastair, 62, and younger son Tyler, 23, Sam swallows back tears that are tempered with disbelief.<\/p>\n

\u2018Like most people, we thought dementia was something that \u00adhappened to older people,\u2019 she says. \u2018I never thought it was something that could happen to my son.\u2019<\/p>\n

\u2018Andre was very much a mummy\u2019s boy,\u2019 says Sam, who had been a \u00adsingle parent for most of her sons\u2019 lives. \u2018We\u2019ve always been a very open family. The boys could talk to me about anything.\u2019<\/p>\n

As a child, Andre loved gaming and spending time outdoors. \u2018He was always at the park, out on his bike,\u2019 she smiles.<\/p>\n

Although he\u2019d struggled with reading and writing at school, it wasn\u2019t until November 2022 \u2013 at her \u00adwedding to Alastair, a bus driver she\u2019d met at work two years earlier \u2013 that she started to worry about her son, then aged 21. Andre had \u00adexcitedly bought a new suit for his mum\u2019s big day, at which he and Tyler gave Sam away.<\/p>\n

But throughout the day he grew quiet and announced he was leaving the reception at 9pm. \u2018We were taken aback but thought \u00adperhaps he wasn\u2019t feeling well,\u2019 she says.<\/p>\n

Over the following weeks, Andre\u2019s behaviour changed. \u2018He didn\u2019t want to go to work. He didn\u2019t have much enthusiasm for anything and sat in his room most of the day,\u2019 Sam recalls.<\/p>\n

After he lost his job at a car \u00admanufacturer for not turning up, she tried to find the cause of his lack of \u00admotivation. \u2018He\u2019d say, \u201cI dunno,\u201d or \u201cI couldn\u2019t be bothered,\u201d she says.<\/p>\n

At first, she told herself Andre was behaving like \u2018a typical young lad who needed a push in the right direction\u2019. But then Andre started repeating what he was being told. \u2018I\u2019d tell him his tea was ready, and he\u2019d say, \u201cTea\u2019s ready, Mum\u201d.<\/p>\n

\u2018He started ending every sentence with \u201cthen\u201d \u2013 \u201cAre you all right, then?\u201d or \u201cCan I have a drink, then?\u201d\u2009\u2019<\/p>\n

\"Andre <\/p>\n

Andre struggled with reading and writing at school, but Sam had never worried about him – until, at age 21, he started displaying increasingly unusual behaviour<\/p>\n

\"Sam, <\/p>\n

Sam, who had worked with adults with learning disabilities before, started to suspect her son Andre (pictured) could be autistic; he scored ‘very highly’ in preliminary tests for the condition<\/p>\n

He became forgetful, going to the local shop for one thing and coming back with something completely \u00addifferent. Once, after nipping out, he took a bus into Norwich. \u2018Tyler found him at the bus stop, not knowing which bus to take home.\u2019<\/p>\n

Yet Andre didn\u2019t seem fazed, she adds. \u2018He never asked why he was forgetting stuff. He didn\u2019t seem to understand, even early on.\u2019<\/p>\n

Sam, who had worked with adults with learning disabilities before becoming a coach driver, started to suspect Andre, then 21, could be autistic. She took him to their GP in June 2023.<\/p>\n

\u2018We told him he was going for tests and we thought he might have autism,\u2019 she recalls. \u2018He said, \u201cAll right then, Mum.\u201d It looked like he took it in his stride.\u2019<\/p>\n

But, she now realises, \u2018he didn\u2019t, because he didn\u2019t understand\u2019.<\/p>\n

In preliminary tests he scored \u2018very highly\u2019 for autism. \u2018It did explain a lot,\u2019 says Sam. \u2018He could display challenging behaviour when he was younger but wasn\u2019t a naughty child.\u2019<\/p>\n

With an NHS autism diagnosis expected to take years, Sam and Alastair pursued a private diagnosis, which they received that September. But as they waited, Andre\u2019s condition worsened, and any relief that they had pinpointed the problem was tempered with a mounting fear there was something else wrong.<\/p>\n

\u2018I knew it wasn\u2019t just autism,\u2019 says Sam, who took Andre back to the GP several weeks later. He was referred for an MRI scan \u2018as an extra precaution\u2019.<\/p>\n

In the meantime, she says, \u2018it was becoming apparent he wasn\u2019t safe to be left on his own. He\u2019d make himself some soup, for example, and put the whole can in the microwave. Luckily I got there before he pressed start. I was on edge the whole time. If I heard the slightest noise I\u2019d think, \u201cWhere\u2019s Andre?\u201d<\/p>\n

\u2018He\u2019d help himself to a can of Coke, put it on the table. Five minutes later he\u2019d come back with another he\u2019d opened. In his bedroom there\u2019d sometimes be ten cans of drink, hardly drunk.\u2019<\/p>\n

That summer, Sam gave up her job to care for him. In October, a month after his autism diagnosis, their consultant called them back for the results of the MRI scan.<\/p>\n

\u2018He sat with his notes in his hand and said, \u201cIf I didn\u2019t know Andre\u2019s age, I would have thought I was looking at a 70-year-old with frontal atrophy, which is an indication of \u00addementia\u201d,\u2019 recalls Sam. \u2018There were signs his brain was already starting to shrink.\u2019<\/p>\n

But the idea of dementia seemed absurd. \u2018I was shocked,\u2019 says Sam. \u2018He was 22.\u2019<\/p>\n

\"Sam <\/p>\n

Sam says she struggled to come to terms with Andre’s dementia diagnosis at such a young age. A doctor told her that he had the brain of a 70-year-old, despite being just 22<\/p>\n

As she struggled for words, Andre seemed impervious. \u2018He was just smiling, looking at his phone, oblivious.\u2019<\/p>\n

Alastair adds: \u2018The consultant said if it was an older person they\u2019d be able to cope. But they\u2019d never had any experience with someone that young.\u2019<\/p>\n

Andre was referred to the \u00adspecialist Memory Clinic at Addenbrooke\u2019s, as the family grappled with the news. \u2018Tyler was very upset, and said, \u201cWhat does this mean?\u201d\u00ad\u2019 says Sam. \u2018I said, \u201cI don\u2019t know\u201d. We didn\u2019t know what the future held.\u2019<\/p>\n

Soon, Andre needed constant surveillance. \u2018We put a baby \u00admonitor in his room with a \u00adcamera. He was getting up, \u00adwandering about at night. We were frightened he could walk out of the front door,\u2019 she says.<\/p>\n

The emotional toll was huge. That November, Sam was hospitalised with pain down her left side, suspecting she was having a stroke. \u2018It was stress.\u2019<\/p>\n

In February 2024, Andre had blood tests and a series of drawing and writing tests. Asked to identify pictures of animals, he mistook a crocodile for a dog.<\/p>\n

\u2018When it came to copying a shape with a pen, his was just a squiggle,\u2019 says Sam. \u2018They told us he could have a type of dementia but couldn\u2019t tell us more until the blood tests came back.\u2019<\/p>\n

Fearing Andre\u2019s time was \u00adlimited, the family created a bucket list of his favourite \u00adactivities. A motoring and \u00adwrestling fan, they took him to car rallies and a live match. They visited the zoo and at home, Sam watched Andre\u2019s favourite TV shows with him on repeat.<\/p>\n

\u2018I could sit for a week watching back-to-back episodes of Peaky Blinders,\u2019 she says. \u2018My life became what made Andre happy, what settled him.\u2019<\/p>\n

During the day, he paced their bungalow. At night, he\u2019d fall out of bed. \u2018I had to bathe him,\u2019 says Sam. \u2018I thought, \u201cI shouldn\u2019t be doing this\u201d.\u2019<\/p>\n

Before he became ill, Andre would tell Sam he loved her \u00adconstantly. \u2018It\u2019s been a year and a half since I last heard him say it,\u2019 she now says quietly.<\/p>\n

While his speech continued to deteriorate, he always recognised his family. \u2018He\u2019d say, \u201cOh there\u2019s Mum, woohoo.\u201d He starting \u00adsaying, \u201cwoo\u201d a lot. Over time the words got less, and the woos got more.\u2019<\/p>\n

By the time of his FTD diagnosis that June, Andre\u2019s only words were \u2018yes\u2019 and \u2018no\u2019.<\/p>\n

The neurology team warned Sam that Andre would continue to lose mobility as his brain stopped being able to control his movement. \u2018They didn\u2019t \u00adsugarcoat anything, for which we were grateful.\u2019<\/p>\n

\"Neurologists <\/p>\n

Neurologists warned that Andre would continue to lose mobility as his brain deteriorated. But his mother was grateful he was not able to understand his shocking diagnosis\u00a0<\/p>\n

So, too, was she grateful that Andre didn\u2019t understand his diagnosis at all. \u2018He never cried. We told him everything, but he didn\u2019t seem to understand.\u2019<\/p>\n

Tyler was as heartbroken as his mum. \u2018Like us, he felt he was grieving his brother while he was\u00a0still alive.\u2019<\/p>\n

FTD is a rare type of dementia, affecting one in 20 sufferers. About 15,000 people in England are believed to have it, although only 3,000 have a formal \u00addiagnosis, with thousands more thought to be unaware.<\/p>\n

Between 30 to 40 per cent of cases of FTD are genetic. There\u2019s no history in either side of Andre\u2019s family that Sam is aware of. She has so far declined testing to see if she carries the gene.<\/p>\n

\u2018I know it wouldn\u2019t be my fault, but if that test came back and I carry it, I don\u2019t think I could \u00adforgive myself.\u2019<\/p>\n

While the couple believes FTD made Andre\u2019s autism symptoms more pronounced, it is possible much of his problematic \u00adbehaviour since childhood was caused by dementia.<\/p>\n

The only treatment on offer was antidepressants, which Andre took for a couple of months to take the edge off his manic \u00adpacing. A distraught Sam tried to focus on the positives. \u2018I thought, \u201cWe\u2019ve still got six years \u2013 let\u2019s make them the best for him.\u2019<\/p>\n

Yet they were starting to lose Andre. Alastair explains: \u2018You would see a little bit of him slip away. There could be a change in Andre within the space of a week. It was so quick.\u2019<\/p>\n

Meanwhile, his failing mobility meant he grew harder to care for, and last September he was moved to a nursing home. Within a month he was in a wheelchair.<\/p>\n

After losing the ability to chew he was rushed to hospital in December after food got stuck in his windpipe, causing a chest infection. In the Acute Medical Unit, Sam was taken aside and told Andre was nearing the end of his life. \u2018I wasn\u2019t expecting it to be that quick,\u2019 she says. \u2018I said, \u201cThe only thing I ask is I don\u2019t want him to be in any pain\u201d.\u2019<\/p>\n

If Andre developed another infection, she decided, nature should take its course. \u2018Andre wouldn\u2019t have wanted to be pulled and prodded about.\u2019<\/p>\n

On December 18 he was moved to a hospice. Sam sat by his \u00adbedside every day, and occasionally he would give her a little smile. \u2018That used to break my heart,\u2019 she says. \u2018Knowing he was still there.\u2019<\/p>\n

Her last words to him were on Christmas Day, when she referenced her own mother who had died of cancer when Sam was 19.<\/p>\n

\u2018I said, \u201cIf you want to go, you go. Your nanny will be waiting and she\u2019ll take care of you\u201d.\u2019<\/p>\n

She was in bed at 5.50am on December 27 when a nurse called to say Andre had died.<\/p>\n

\u2018I screamed. I remember shouting, \u201cI wasn\u2019t there for him\u201d.\u2019<\/p>\n

In the hospice, Sam held her beloved son\u2019s hand. \u2018I kissed his head and said, \u201cWe\u2019ll always love you.\u201d Losing Andre, I feel I\u2019ve lost a part of myself.\u2019<\/p>\n

Andre had been too ill to understand his family\u2019s decision to donate his brain after his death. \u2018But we all agreed he would have wanted us to do it,\u2019 she says. \u2018He\u2019d have been happy to know he was helping. I got a call from the Brain Bank at Addenbrooke\u2019s to say thank you. It was a comfort.\u2019<\/p>\n

One day, she hopes to set up a charity to raise awareness and help other families affected by early-onset dementia make \u00admemories, as she did.<\/p>\n

\u2018It made me realise time is \u00adprecious. I want to make sure his legacy lives on.\u2019<\/p>\n","protected":false},"excerpt":{"rendered":"Deep down, Sam Fairbairn knew her son, Andre, was about to receive a devastating diagnosis as they sat…\n","protected":false},"author":2,"featured_media":468277,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[34],"tags":[98,1103,97,149,114146],"class_list":{"0":"post-468276","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-health","8":"tag-dailymail","9":"tag-dementia","10":"tag-health","11":"tag-lifestyle","12":"tag-peaky-blinders"},"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts\/468276","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/comments?post=468276"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/posts\/468276\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/media\/468277"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/media?parent=468276"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/categories?post=468276"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/us\/wp-json\/wp\/v2\/tags?post=468276"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}