I was catching up with an old friend whose son has autism. She said his autistic traits have got worse with age & his life is empty & meaningless. He spends all day ripping up bits of paper & 'stimming' despite being in a specialised single service unit with lots of involvement from his family. Her story is depressing & rings alarm bells for me. Chrissy's autistic traits appear to have intensified with age & have become more entrenched, despite, like my friend’s son, receiving specialised services. I say ‘appear to’ because I’m not sure whether we unwittingly suppressed Chrissy’s autistic traits when she was a child by riding rough-shod over them! Because we never knew that she had autism then, we either dealt with her tantrums and challenging behaviour as naughtiness or reacted with bafflement.
Did specialised help come too late for Chrissy – and is it not specialised enough? Are her medications contributing to her autistic traits becoming more marked? Now that we surrender to the awesome power of her autism, does she feel less constrained and no longer need to ‘pretend to be normal?’ (If it’s the latter, the freedom to be herself doesn’t seem to be making her any happier.)
My research on the subject indicates that autism is not degenerative; children & adults with autism should continuously improve, especially if they receive specialised, individualised services. Maybe there are other factors at play – autism has many different causes and comes in many guises – Chrissy also has epilepsy and an underlying chromosome disorder. Undoubtedly, some children stay the same, get more frustrated as the years pass or deteriorate due to other contributory factors, but some do get better (& calmer) with age.
Hi Jane. Paul's also on the autistic spectrum, although autism is only a small part of his disability really, and he's now 33 and hasn't gotten any worse since he was a child, quite the opposite. He's much, much calmer now than he ever was, although admittedly it's difficult to say whether his outbursts and hyperactivity were due to autism or something else. As I always say, never give up hope xx
ReplyDeleteThanks Sharon - heartening to hear a positive uplifting story. No easy answers I guess... xx
ReplyDeleteHi.Likewise I have a son, Jonathon, aged 24 who is autistic, epileptic, SPD and dyspraxic. He was slow from the outset.I never compared my children and on the face of it he was just different.
ReplyDeleteAt age 3y Jonathon attended a CDC for six weeks as an outpatient and the conclusion was that Jonathon would need support with every day living. There was no actual diagnosis but twenty years ago Autism was not diagnosed easily as there was a generic belief that all autistic children sat up the corner rocking. Of course that has changed in recent years (Thank Heavens!) and it is recognised that Autism can mean a multitude of varying symptoms and signs.
After the CDC Jonathon heard from and was seen by no professional at all. Greg and I were still in cloud cuckoo land believing that our son was just slow. At age 7y I had a new cooker delivered and Jonathon spent the whole day running around the box in the kitchen screaming.
I telephoned the Autistic society in the city where we lived. (Our GP had briefly mentioned some weeks before this that he was considering Autism as a diagnosis). From then we were allocated a Community Nurse and a social worker.
Time moved on and Jonathon became more difficult to deal with, attacking myself, Greg and his younger brother James, at will. Eventually at age 9y I videoed Jonathon in the midst of an outburst and to cut a long story short I showed this short film to the school where Jonathon was attending. The next day the Police and Social Services turned up on my doorstep asking if they could remove Jonathon from our home.
Greg wasn't home, neither was anyone else. I was scared stiff. They had no court order so I refused but the badgering to let him go with them continued relentlessly for three hours!
That night I slept across the front door, convinced that they would be back to take my child from me.
Two weeks later Jonathon, along with James, was placed on the Child Protection Register for neglect.Of course there was no evidence but it still happened. Six months later this was recognised so they were replaced on to the CPR for abuse. Six months later the same happened again and they were replaced for neglect again. Eventually the Chairperson of the Case Conferences went on a two course about Autism and came back an expert and called a meeting to remove both children from the CPR.!! An enquiry was undertaken in 2000 whereby Social Services were found guilty of mis-using the system and we received a full apology.We did win Jonathon a placement in a specialised centre from age 15 until he was 18 y. He lived at this centre and came home weekends. Whilst he was there he blossomed and even attended College. The professionals there taught him some coping strategies to avoid becoming violent when he was confused or frustrated.
Since he came home he has not had any support from any professional body and has gradually deteriorated to a point where he is very clearly autistic. I wonder if it is our fault? How much fighting with professionals and authorities can we undertake as parents? We are both exhausted to be truthful.
Recently we have taken our case to the Ombudsman and won the case that Social Services have not done their job right (AGAIN!!) and that Jonathon should have their support.
In 1997 I was diagnosed with MS and I also have a degenerative spinal condition. My health is poor and Greg has had to give up work not just for me but for me having to care for Jonathon. Life is tough although I do realise and respect that there are people going through much worse than we are.
Jonathon cannot/ will not work, he will not leave the house or even his room sometimes. He is fast becoming a recluse and if we try to tempt him differently we are at risk of his violence. It is so sad that his life is going this way. He is so handsome and is wonderfully generous in nature.
We will wait for the next chapter to unfold now, when SS come out and prepare a Care Plan twenty years late.
Christine Morgan
PS. I am happy for anyone needing to chat to ring me on 07719358725.
Thanks for sharing your experiences with autism, Christina. We, too, experienced these generic belief systems. When Chrissy was little a paediatrician told me that she could not be autistic because she had speech! So sad to hear about young adults that are abandoned by support services once they leave specialist colleges & schools. I do hope that SS will step up to the mark to give you & your family the support you need but I'm not holding my breath I'm afraid....
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ReplyDeleteUnfortunately, I was born in 1961 when ASD was not a easily diagnosed neurological condition and was only professionally diagnosed in May of 2017. I have battled complications from it (especially the Sensory Oversensitivity) and have had almost weekly overloads my whole life. I lost many jobs because of this. Luckily I didn't get the mental retardation that some get from ASD but am emotionally and socially retarded (You will have to excuse my directness but I am not PC and the stigma of being labeled as such don't bother me as it does most people) In 2009 I had what is called "Midlife Autistic Breakdown" which is a regression and basically destroyed my life as it did my Mother's. Thanks to the current meds I am able to cope more easily and no longer have a death wish. I was born with these problems and living as an Neuro Typical because I never even knew I had ASD were a contributing factor. Being extremely chemical sensitive also is an epigenetic factor. According to statistics I have read only 10 to 15% of people on the spectrum experience this but the understanding of ASD is still in its' infancy so I believe this number is low. I hate to give you this information but think you have a right to know the truth and don't sugar coat things to spare peoples feelings. Good Luck!
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