Hi, I have a friend who is at crisis stage with the following situation: medical gaslighting and flat out refusal to help (from A&E, Cahms and paediatric team this week alone). Three boys: 9 year old diagnosed as Autistic, and is having increasingly frequent quite violent meltdowns that are impacting the whole household. 12 year old diagnosed with chromosome microdeletion , Autistic, dyslexia, possible dyspraxia. 13 year old with extra chromosome, small bladder, low muscle tone, hypermobility, bowel problems, severe allergies and is on the waitlist for ASC.
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Hi @LesleyM - welcome to the forum. Your friend is dealing with a lot there - having one child on the spectrum is tough, and the problems multiply when there are more than one - especially if their behaviours and obsessions impact on the others’.
First of all, is Mum getting any help at all from anywhere? Is there a local group she can contact?
Can you explain what you mean by “medical gaslighting?” I’ve heard the term used in different ways and want to be clear what Mum is dealing with here.
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@LesleyM encourage your friend to join the forum herself or the National Autistic Society forums. It’s hard to advise through a middle person as to tailor advice we need to ask questions.
Your friend might find the Cygnet course helpful. It offers the opportunity to meet and gain the support from other parents of children with autism and is a great way to learn new autism friendly strategies and be signposted to local services.
It might me available in her area:
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As a carers forum, we focus on the help someone needs to care for a relative, rather than a medical diagnosis. Regardless of age, there are common needs for time to rest, financial issues, emotional support, counselling. Most people find the forum when they are desperate, overwhelmed and utterly exhausted. Sometimes it helps to put what you want in a random list, then shuffle it into order of priority. Maybe you could suggest this to your friend? A simple “how do I ….” can bring forward a few ideas. A number of members, including me, have children with life long health issues who are now grown up.
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Hi Charlesh47 - thanks for this; I’ll check re the local group, but I’m sure they are - they’re in contact with several groups.
Medical gaslighting - at a recent A&E visit because of a meltdown, CAMHS was refused because the child wasn’t suicidal.
As always, they’re having to wait a couple of months for a Social Services assessment to even find out if any care is possible.
Social care will almost always say no to care support or respite on the grounds that “they don’t need it” - they forget that parents have needs too.
I wouldn’t call that gaslighting. The problem is that CAMHS services are overloaded. They were at 25% of the capacity they needed back in 2002, and things are considerably worse now. So they make decisions like this to keep the workload manageable. It’s a risky approach, but blame successive governments for ignoring mental health in general and kids with mental health needs in particular.
Definitely a case to take to their MP. But the local groups often have people who have had success dealing with the local agencies and who can advise or support. That would always be my first port of call.
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Many thanks - I’ve passed on the information.
They are quite joined up with the local groups, but I’ll pass this on. Thank you.
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Thanks - I’ve suggested they join the forum.
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From the carer: Lesley
27/08/2024 08:31
From the carer:
One example of the gaslighting that we experienced was a locum consultant saying after a few minutes of meeting our middle son that he was normal and didn’t have autism. That the problems he had were from his chromosome deletion. Despite his genetic report stating asd and adhd go with this deletion and an ados report saying consistent with ASD. He didn’t know any of our sons history and took over his care from another locum. We have since seen a proper consultant who then agreed he has ASC, possible dyspraxia and an eye condition.
Edited by moderator: surname removed for confidentiality
Hi Lesley,
I was just wondering if the carer received any help from social services or related organisations. For example, has a carer’s assessment been made? Is there any way respite could be arranged? There are also teams that specialise in support related to behaviour that challenges (although the support for this was very abysmal in my own sons’ case).
That sounds more like diagnostic overshadowing.
Whilst this caused stress at the time, your friend would do well to conserve her energy and pick her battles.
The latest consultant has verified that autism is part of his diagnosis.
Seeking support for his autism, such as a sensory assessment with an OT (for sensory triggers and how to meet his sensory needs), strategies to manage his challenging behaviour and OT or physio for his dyspraxia if it is severely impacting his functioning. Is he being seen for his eye condition?
Is he attending school?
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Thanks Melly1 - will pass this on.
Thanks Janet_1601 - will pass this on; the carer has made contact with many sources of support.
My son was brain damaged at birth, but this was only diagnosed when he was 8, when he went to a school outside the state system. Those years were so tough, I was considered a bad mother and as such had zero support. Things changed for the better with the new school. If your friend is struggling to find the right school, or the funding, I would suggest she contacted an organisation called IPSEA. They gave me lots of support when I was desperate. Twice I nearly just drove away from home and all my problems because I was utterly exhausted, mentally and physically.
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Thanks @bowlingbun; sorry to hear about your situation. I’ve already passed on the IPSEA details; the children are in schools.
Hi @LesleyM - just writing to agree with the points @Melly1 raised. There have always been professionals who go blind to any other conditions because there is already one diagnosis in place. (Far too) many years ago I supported a family who had a young daughter with albinism. Dad thought she also had autism, and as a completely unqualified parent I had to agree that many of the symptoms were autistic in nature. The professionals in charge of her care all put it down to the albinism a,d the partial sight that goes with it. But that didn’t explain many of her behaviours, and I helped Dad to put together a list of questions based on my observations. She - eventually - got a partial diagnosis, and the family moved back to Dad’s country of origin. I’ve always wondered how she is.
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Hi; have had confirmation: they are not in school, they were withdrawn after bullying (including by the Senco!) causing overwhelming anxiety leading to school refusal. They have been home educated for over a year, similar to their elder sisters who have moved out having got their dream careers.
That is too great a workload for one person! Hopefully IPSEA will be able to help. My son went to the Sheiling School in Ringwood, a “Camphill” School. He left about 30 years ago, when I saw the things he was doing at school I wondered how much he was absorbing, in those days his speech wasn’t very good. As he matured and his speech improved, I realised he’d taken in a lot! Someone said to me if a little fish was struggling in a big pool, they might do better in a little pool. Specialist teaching in a small pool was so much better for my son.
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Hi LesleyM,
I am sorry to hear that the children are not in school. My children were unable to attend school from Yr 9 and Yr 10 (respectively). My eldest went into a CAMHS unit as an inpatient, and my youngest was medically unfit due to anxiety (compounded by unmet needs as a neurodiverse individual).
Once the children stopped attending school, the pressure on the family really escalated. Indeed, it escalated to the point where I had to give up working outside the home, and take on more remote/online work to support the family. My husband could not cope with the demands of two boys with so many additional needs. He has additional needs of his own.
It was then that my assumptions about what to expect from services began to change. My eldest received a token education within the CAMHS unit, although to be fair, he was often too unwell to learn. My youngest received two sessions of 2.5 hours of tuition from a tutor from the local PRU. Most of the time he hid from the tutor. I had thought that education was a fundamental right for children in this country, but as the years have progressed, I realise the reality is very different.
What really would have helped, and this is something I tried to facilitate, was access to specialised educational provision for one or both boys. There was a provider who ran weekly boarding provision, and this would have been ideal for our sons, perhaps if they were a little younger.
I wonder if the carer you are working with has considered specialised residential placements. If the LA questions financial priorities, it would cost them less to invest in the children’s welfare now, than to pay for the fall out later, which in our case is two young people completely NEET, and one who had to go into full time residential care as an adult for three years.
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