Jordi

My son is 19 years old. He is considered severely autistic, non-verbal with a severe Intellectual Disability. At the age of 4 years and 10 months we took my son to a walk-in Speech and Language Therapy test, the assessment said my son's speech and language was developing normally and he was discharged. At the age of 5, he sat a 2-hour receptive skills assessment, his understanding of language was concluded to be normal (he became distracted at the end of the test so it was stopped, but if he had completed another 3 pages of the block he would have scored “advanced”). The clinical psychologist thought he was high functioning and the Educational Psychologist who assessed him at 5y.5m old, mentioned Asperger Syndrome.

At 5y.9m he could not sit for another SaLT test as he had regressed so much, and following an Autism test/observation he was diagnosed by several doctors and professionals with Autism (severe). His previous normal developmental history was ignored by the assessors. He had normal development speaking in 2 languages, he was very intelligent and was advanced for his age, he was toilet trained successfully and ate by himself from very young.  He was interested in books and knew a lot of vocabulary and could say full sentences from books at 20 months old. He had very good memory.

At age 2y.9m. he had a couple of nights of night terrors. He woke up with the full body covered in eczema from head to toe which was all gone after a year.

He learnt all the manufacturer car brands from a Top Gear (Car) magazine catalogue at aged 3 and a half. 

The regression began at around aged 4 and a half and he started showing physical behaviours typical of autism(looking at hands and spinning, hitting his head with the palm of his hand, tics), anxiety and night terrors (4y9m) and he began to not say words properly and speech began to slowlydisappear and he would say less and less. He also talked about seeing bugs (flies, spiders, insects) in his vision regularly and during the night terrors those were very vivid as if he was having “fizzy hallucinations”. The main regression was between the ages of 4 and 7 years old. However, he has continued to regress over time. During this time of main regression there were regular meltdowns and high pitch screaming episodes. He became sad and tearful. Hitting himself. The speech loss continued over the years, he now has only one word left which is also becoming garbled. His receptive skills have also regressed and general presentation. In the last 2 years, he has lost concentration and previous interests (playing games in his tablet, doing jigsaw puzzles). 

He was diagnosed with Childhood Disintegrative Disorder, to describe his developmental regression, when he was 7 years old – this was after some medical professionals watched some videos of him behaving normally when he was younger. He had several tests from Neurology (brain scan, blood and urine tests, EEG and some genetic tests) which all came back normal. He used to be very hyperactive climbing and jumping all the time; he is now calmer and more passive. He has many sensory difficulties.

Over the years we tried many medications and therapies. Nothing has made a substantial difference. Mainly, he has changed as he’s grown older.