Counselling support for young adult with moderate learning difficulties & on the Autistic Spectrum

[Squirrel12]

Hi I am a parent carer for a young adult who has been diagnosed as on the autistic spectrum and with moderate learning difficulties. He currently is at an employment training hub which is council supported. He can on occasions suddenly flare up from out of nowhere (very rare around once every 2 months is closest I would say). He lost his dad recently which obviously has affected him but he doesn't really show his emotions. He had one of his flare ups at the employment training hub where a chair was thrown which unfortunately bounced and hit someone but I am told was not a bad injury. The hub now says he can't return until he has more support which they are not able to provide. Obviously he is devastated and has nowhere else to go (with me working full time he will not have much support either). They are looking to see what support can be provided and advised me to contact my GP about counselling. My GP has said to contact CRUSE about counselling and didn't make a referral, GP is going to do a blood test to make sure there is no underlying reason for his flare ups (hub has had 4 in the 1.5 years he has been there so not expecting anything from that and he has had flare ups since around junior age). I am just surprised that the GP hasn't made some sort of referral for counselling, does anyone know if this is normal? I've never had anything to do with counselling so don't really know how it works. Any advice or own stories would be welcome to help me get a clearer picture. Thanks for any advice

[Galwaybay2]

There are many more counsellors with understanding and skills around neurodiversity, as there should be, but there is still some misunderstanding and your son's GP may not know that NHS talking therapies can offer him help. He doesn't have to be referred by the GP, you/your son can self-refer through the surgery or your local Wellbeing team. If it were my son, I would be behind him making sure that it is left to the counselling agency to triage, they will know their counsellors' skills and experience, (the NHS outsources talking therapies). The problem with NHS counselling is that it will be limited to the 6, 8 or 12 weeks that they fund within your Trust and it will end there. For more consistent support there should be counselling charities for the under 25s in your area, but there may well be a waiting list as services are so stretched. There are also specialist psychologists and private counsellors local to you, which can be found via a search engine or by looking at the BACP register or The Counselling Directory and by reading up on their specialisms.

I am not surprised that your son expresses his distress in the way he does, anyone who cannot put feelings into words or who has no outlet will find ways of dispersing or numbing intolerable feelings and sensory overload, we all do it. Your son will need help to find better ways to release pressure as it builds and the people around him will need to be able to help him before it gets to that point. After my son was referred to the Learning Disability Mental Health Team after such a crisis, he was offered art therapy, which we now know has been a brilliant way to access and process emotions without saying, 'I am feeling..', it is powerful and has been used with young children for years. The therapist uses drawings/art, staying in the metaphor, to talk about what has been expressed. Music therapy works the same way. Now, based on the work they started, my son has more words and a sense that he feels better when other people listen/attend to how he feels. When we go walking, a natural way to find out what's going on for him, he can be in silent thought and when he speaks I will catch anything and reflect it back gently which gives him the chance to hear back what he has said and what he feels, ''Yes, I think I might feel angry if ....' If he is silent I might notice that gently too, 'I wonder if you feel quiet today'. This way the person is validated, feelings are being contained with another person to make them more manageable, they are building a sense of self/self-esteem, they are developing an emotional vocabulary so that, ultimately they can be better able to self-soothe. Good luck with it.

[Squirrel12 in reply to Galwaybay2]

Thank you so much for taking the time and the care with your response. That has been really helpful. I struggle to express myself and talk to him, so you have given me some good ideas....we went for a walk yesterday and I was struggling with firstly how to bring up a chat and then where to take it, I like the idea of reflecting on what he says, I will certainly give that a go. I clearly need to do my research on the counselling side but you have given me some pointers, thank you thank you thank you

[FELTSPAR in reply to Galwaybay2]

Hi Galwaybay2,

You have provided a very good answer here for Squirre12, would you know about services for over 25years old with ASD ?

I would be very grateful if you happen to know the route through.

THANK YOU

[Galwaybay2 in reply to FELTSPAR]

As above. If you do your search and think you have an idea that this person or agency might help, you can ask to speak to them by phone before committing to anything more and do that as often as you need until you feel satisfied. There's a lot more help now than even a few years ago and there are lots of counsellors who really know autism. Each person with autism is different and your counsellor really needs to be fully open to that.

[jazzy15]

Hi Squirrel12,

I can't really offer much productive advice, but I just wanted to say on the counselling services, that many are self referral removing the need for a GP or any other professional to make a referral on a person's behalf.

I've had a look at CRUSE & that seems to be the case here, that referrals can come from the person or a parent.

I used bereavement services for my children 18yrs ago, they were very young at the time, both with ASD, we lived at the other end of the country then. I arranged this myself with Winston's Wish, if he is 25 or under it may be worth looking them up, maybe just have a look anyway as there could be information on there you might find useful.

Not a bereavement service but I've also recently used my local counselling services which is also self referral. The process was simple, in that I made a call, they took some basic info, then a couple of weeks later someone called me and did a phone assessment, this was over an hour & was quite intense (for me) this information then was used for them to identify what sort of counselling would best be suited eg: CBT, talking therapy etc. I was contacted after a while with what they could offer me, then I was placed on a waiting list. It was a couple of months to wait then I got 12 sessions of talking therapy (extended to 14 sessions) which was done via video link so I didn't even need to leave the house.

Are you a member of any of your local Autistic Support services or groups, Facebook pages etc?

For example we have a local group PEGIS, set up by one parent a few years back, which has become a main support & information group for our area, you may have something similar for the area you live.

Are you signed up with the National Autistic Society, there is so much useful advice on there, also a section on bereavement, a community chat, there are ways to contact them for advice & sign posting.

Whilst looking into support & counselling, also don't forget about yourself, these services can support both him & yourself.

Sorry I can't offer any real solid advice, but I hope you find the needed support soon & get him back to his employment hub.

If you want to ask any questions feel free to message me anytime.

[Squirrel12 in reply to jazzy15]

Hi Jazzy 15,

Thank you that information has been really ueseful - when my son was first diagnosed I had thought it would open up doors in the way of support but didn't get very far in the way of looking things up...I'm clearly not very good at it! I will certain look again and see what I can find out there for him, thank you, you have given me some good ideas. I guess I am not very good at asking for help which doesn't help but I will certainly pull my socks up and do it.

Thank you again, you are very kind.

[jazzy15 in reply to Squirrel12]

Hi Squirrel, Just checking in, to see how you have gone on this week?

How are you feeling? How is your son doing?

Have you managed to find any services or groups?

Diagnosis & opening doors ....I thought that too, I soon found out the diagnosis was just the beginning, information & support did not come readily, I had to hunt, dig & fight my way to getting the support we needed....it's an ongoing battle.

[Squirrel12 in reply to jazzy15]

Hi jazzy15 thanks for thinking of me. I have been trying to do my homework but am not finding it easy I have told the employment hub that I want to make the referral myself following the advice given further down, in response to an email received from them, but they haven't come back to me so I'm going to have to chase on that. Cruse have said there is a 7 month waitng list for counselling in my area, and for us it would be longer as more specialist help would be needed, so I wasn't going to bother then it occured to me I may as well say yes and get on the waiting list, I can always cancel it later. Nothing further found though., I feel there is help out there but don't know where else to look, still I will chase the employment hub and see where it goes from there.

Yes, everything is a fight, and when people ask what support you have they always look as though there is a lot more that could have been done/is available, but darned if I can find it

Thanks again for asking....we'll soldier on.

[jazzy15 in reply to Squirrel12]

Hi Squirrel, How have things been going?

Has anything progressed for you?

[White25 in reply to Squirrel12]

Hi. I found a counselling group called EACH, it was self referral, they are all over London, it was done on a video link from my home, I did not wait too long, it was very good, they gave me 16 weeks.

[STP1]

good morning. I was a community learning disability community behaviour specialist and although retired, still work with a company providing support to people with autism in a residential setting. I also trained in CBT and this was only effective with people that had insight into their behaviour and could reflect and respond to more positive solutions.

We currently work closely with similar service users as your son. We referred them to the local LD health team and told their GP we had done so. They were assessed by the LD/mental health team and LD psychologist and were diagnosed and we are able to support them behaviourally and with non intrusive medication in some cases. I suggest you do this and the team will be listed on your local borough website and also ask for a named social worker to be allocated. Post how you got on??

[Squirrel12 in reply to STP1]

Good morning STP1, thank you for your response, the Educational training hub that my son is with said that they would be making a referral to see what support was available and it may be the team you suggest (they mentioned that a SW would be allocated and would remain with him throughout), they just made it sound like it would take so long and meanwhile he has nothing. I spoke to them on Friday (over a week after the incident) and they said they were preparing the paperwork for the referral, so I am guessing it will be quite a while before anything happens, so I am just trying to get him something in place now rather leaving him there thinking he has done something wrong (I keep telling him he hasn't in different ways but I know him well enough that he will think that no matter what I say). I fear you saying anything about medication which I think is why a lot of people avoid the authorities intrusive or not - I don't believe he has any chemical inbalance it is more learning the right way to express his emotions. Been looking up on the counselling side but so far the nearest to me that looks promising is about an hours drive, I have been sending emails out to other organisations, so fingers crossed.

Thank you for your advice.

[STP1]

Good afternoon, totally agree with you! In my experience initial assessment is essential, but I don’t feel the employment hub is the right place to make that referral? He needs positive behaviour support (PBS) which builds on

and recognises his interests, skills and areas in his daily living that he needs support with and helps him cope. Would you Google ‘MAS Motivational Assessment Scale, Mark Durand’ and fill it out? We use this as it’s a completely objective way of supporting people and why they might be doing what they’re doing?

[Squirrel12 in reply to STP1]

ahh thank you - I thought it would be better if I let them do it but what you say makes sense, I'll contact them tomorrow

[elephant30]

Hi Pysicatrist not GP will help regarding counselling, appropriate for Autistic person and not the Generalised counselling.

[Galwaybay2 in reply to elephant30]

Sorry to disagree. As a counsellor/psychotherapist and parent I absolutely think the right therapy can provide excellent support and build long term change. Psychiatry has a very important part in monitoring, diagnosis, medication and referral, but they are not there as therapists. Behaviour is a symptom of something deeper, and it changes when the feelings are being looked after by an experienced, emotion focused therapist. When someone is acting out their distress they do not need to modify the behaviour, they need professional help to get into what underlies it.

[White25]

Hi I had counselling but I made a referral myself, I cannot think of the name of the company if I can think of it I will get back to you, they were very good.

[Squirrel12 in reply to White25]

Hi, thank you but don't worry I've managed to sort some therapy to start next week, so I'll see how it goes

[Steve__]

Hi There

Just a small observation... I don't think anyone has mentioned the PDA society... Might be worth a look for unpredictable behaviours?

Good luck, Steve

[White25]

Hi I had counselling due to traumatic childhood, the name of the company is EACH, it was a self referral, you can check them out on line, they are inmost London Boroughs, I do not know where you live. I was given an answer to all my questions s, the lady was brilliant, I thoroughly enjoyed it, it was on line via zoom it was the best thing I ever did, I was a bit anxious. It did not take too long waiting. She told me I then needed therapy for 6 months, I waited a year and 6 months for therapy, it was OK, got answers to questions going back 40 odd years.

Good Luck, what area do you live in.