Advice Needed changes in behaviour: Hi, I'm new here... - Mencap


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Advice Needed changes in behaviour

Orange45 profile image

Hi, I'm new here.. I have a 21 year autistic son who seems to have become agitated at the day care centres he attended. I am trying to introduce a 1:1 support but not sure how to go about it as I tried this a few months ago and someone came to the house but he got very agitated as soon as they arrived and I had to ask them to leave. Also he doesn't seem to want to go out anywhere only stay at home and seems to go to bed very late and wakes up later in the afternoon which he has started to do as he isn't going to the day care centre anymore. Finding this hard to cope with as he used to be very easy going and never got agitated or aggressive until a few months ago. I can't seem to think what has brought this change as nothing in his home life has changed. Please can anyone help with any advice? Thanks

28 Replies
Shue profile image
ShueCommunity friend

Hi Orange45. It's so frustrating when the normal behaviour changes and with no apparent reasons. I myself would firstly rule out any type of medical reason get a health check done and have a dental checkup. Maybe he's a bit depressed? Has anything at day centre changed, is he bored there? Something we regard as trivial can have a massive effect on an autistic individual. Does he attend any clubs or have any type of social outlet, my own son attends mencap social groups with support and special olympics and it's so good for him and gives him something to look forward to. I hope this helps. Best wishes.

Orange45 profile image
Orange45 in reply to Shue

Hi Shue, thanks for your reply. He used to go to a social club where he really enjoyed going but he decided he didn't want to go anymore. It seems like since he turned 21 in October and we came back from Barcelona he has changed. I have had meetings with the day care, social worker and psychologist to try different things as he seemed to be behaving at the centre. But now he is home he seems to be like it at home as well. I took him to the doctor 2017 for a check up and they said everything medically was ok, but did refer to a nutritionist as he seemed under weight for his height. We have an appointment for Friday 10th January. So wanting to sleep and not wanting to go out could be linked to him being depressed do you think? I have thought it myself but wasn't sure. It's so heart breaking to see him this way as he loved going out and about.

Shue profile image
ShueCommunity friend in reply to Orange45

I totally understand. My own son with Downs syndrome and autism developed Schitzophrenia 2 years ago. He has changed so much, everything that was important to him and he enjoyed he no longer wants to do. He is flat, wants to constantly sleep and has become socially awkward, he was life and soul of any event previously.

Let us know how you get on at the appointment, try and encourage activity even if he moans and groans. Walking can help so much fresh air and exercise beats central heating and tv. Good luck.

Amberman profile image
Amberman in reply to Shue

Hi sue I have some basic training

Have you tried the planning ahead way for example

Today Tom we’re going to the centre and after we will go to mc ds etc

Or say Tom do you want to tell me about centre

Basically it’s alleys think ahead so your son knows he will see you again


Your son appears very similar to mine.

My son also went through a similar stage when he was 19.

It turned out that it was his wisdom teeth troubling him. He had all 4 removed. He became a lot calmer and most of the aggression disappeared. So well worth having dental check up.

Also if he does not want to go to his day centre, it could be a number of reasons. Changes of staff and staff who do not understand his triggers could have an impact on him. As you must already know autistic kids are very sensitive and can pick up if someone does not feel comfortable with them. Changes in surroundings, smells, colours etc.. could be another reason.

My son does not like things being moved or his own things touched. this is something he has developed in the past few years. He has also become a sensory assessment with n ocupational therpist could be something else you could request.

Good luck

Orange45 profile image
Orange45 in reply to Lucacielle

Hi Lucacielle, thanks for your reply - He goes for his check ups at the dentist regulary the last time being in November and everything seemed fine there.

When he started at both the day care centres last September he seemed happy and enjoyed going but last January when he went back to the one where he still goes horse riding we started to encounter problems very minor but have built up to how he has become now. And if I am honest I am struggling to understand how he has become as we have never had any issues with him previously when he was at school in full time education. I understand he was at the school for a very long time. In these last few months I have found that he doesn't want to go out anymore or do anything he used like doing.

About the day centres he was going to 2 so I stopped one of them as he wasn't enjoying it and it seemed to agitate him as we were getting phone calls from the centre to come and pick him up. The only day centre he goes to now is on a Tuesday morning where he goes horse riding as he enjoys that. But the last time we had to collect him as something set him off and he got very agitated and aggressive with some of the staff who were trying to calm him down.

I have been looking into depression/anxiety and think that might be the problem due to his sudden behaviour change. We have a appointment with the doctor on Friday 10th January. I know medication isn't the answer but I am hopeful that it may go towards helping him with the agitation/aggression he is experiencing. I have wondered whether it could be hormonal changes he might be experiencing. I am just clutching at straws to be honest just to find some sort of answer.

Thanks for you advice though much appreciated

Lucacielle profile image
Lucacielle in reply to Orange45

I dont like to say this but it appears the staff do not have enough training on how to handle his behaviour or on autism. If staff do not communicate with each other and the staff working with your son keep changing then you are going to get behavioural issues. You clearly should not be getting phone calls to come and collect him.

Your son should be going to the same day centre not 2 different ones so you were very wise to remove him from one of them.

It really sounds as if it is staffing issues and not your son.

As you said, yes, it could also be hormonal as puberty does start a lot later with our kids.

You do not say if your son is verbal. Does he follow any schedules for his daily routines.

My son has a basic schedule up in his bedroom which helps him get out of bed and follow his morning routine and where he is going - shower, breakfast,taxi and c. house (his day centre) it only change at weekend when the last 2 are replaced by home and black kuga car.

Lastly and I hope I can be wrong in thinking this, has someone done something to upset your son at the day centre which has really put the barriers up as all this started after he left full time education.

Sorry to go on but we have been through very similar issues in the past and it has taken us a long time to reach where we are today but we do still have to tread on eggshells!!!

Orange45 profile image
Orange45 in reply to Lucacielle

Until the beginning of 2019 we have never had any problems with our son either at school or at home and he has always been an easy going, likes going out and about on public transport etc.

He is non verbal but can say odd words like yes, no also he seems to understand general things to do with him if he wants to go somewhere, or do something he lets us know. He has an ipod from school with symbols which he used alot at school but didn't at home.

I started the process of getting a social worker as we never had one until probably around 2017 due to getting the direct payment as this was the only way to get the extra funding for him. September 2018 he started at a day care centre for 3 days a week where he was getting picked up by the day care centre and dropped off. He was happy doing this no problem he seemed to blend in and was quite they didn't even know he was there. Christmas holidays he was fine at home no problem, I even took him to Birmingham and stopped over for a few days. Towards the end of January 2019 I received a phone call from the centre saying he started to prod and poke other service users which might have been his way of communicating or reaching out. They tried to stop him from doing this but it carried on and then I receive a phone call while I am at work from the social worker asking for a meeting. I went to the centre and was told what was happening and I was astonished to hear this as we have never experienced anything like this, so this carried on on and off. Some months later the mini bus came to collect him and he opened the door and shut it again and took his shoes and socks off and sat down in the lounge refusing to leave. I get a phone, when I got home he put his socks, shoes and coat on and I took him to the centre. I have said at the meetings I have attended with the day care centre that something happened in January 2019 as that is when this all started but have never got any answers only that he must have been like this at school and home and I must be hiding the truth. We have a new social worker and she seems a lot better than the previous one we had. I have said that the day care centres have made him become this way as he was never like this ever.

At the centre when they have rang either myself or my husband to come and collect him he as become very agitated and this leads to him pushing the staff and then another intervenes from him hurting the first one and then he starts on that person and on it goes until one of us arrives. At this point he is covered in sweat and I am sure his heart rate is very high. It takes us a while for us to calm him down and remove him from the centre. Once we have him in the car he seems to become his usual self. So this is why we have dropped it to only half a day because of the horse riding as he enjoys that but when I have asked him these last few weeks he has said he doesn't want to go which indicates to me he doesn't want to go at all.

He was going to another day care centre 3 days a week which he enjoyed until May time when he started doing the same sort of thing their. They actually sent us a video of what he was doing and seeing that I decided to stop him going there. He liked going on Wednesday as they have a walking group which he seemed to really enjoy but he said he didn't want to go to that anymore. At this moment in time he is only going to a day centre Tuesday morning for horse riding but I don't think he will want to go on Tuesday 7th January.

I am looking in to 1:1 support for him with the social worker and have a meeting with organisation called Umbrella but that isn't until 15th January. With how he has become at home since not going to the centres i.e going to bed late and waking up later in the afternoon no matter how many times we go up to his room and try to wake him he isn't getting up. This has led to me thinking maybe he is depressed and we have a doctors appointment 10th January. The social worker has told me about another organisation called Shared Lives and made a referral to see if they have anyone suited to my sons needs. I realise that even if the doctor does prescribe antidepressants it's going to take a long time for them to work if they do work. It's just at present I don't know what to do about him not wanting to do anything or go anywhere this is so frustrating and if I try to encourage him he just starts to get annoyed then keeps repeating no,no,no and I have to leave the room and shut myself away from him. The change in him is unbelievable and I worry that this is how it is going to be. Sorry to go on and on.

I appreciate your thoughts and suggestions in trying to help thank you so so much.

Lucacielle profile image
Lucacielle in reply to Orange45

Hi It appears he is at his best when he does activities he enjoys.

As I mentioned before it could be that he needs more structure and routine to his week going to the same place everyday mon-fri doing things he enjoys. I think you will probably need to tell the social worker this but it could mean they will have to do the funding directly rather than you with direct payments, at least for his day care. This could also help with the social worker reviewing the situation. His needs are obviously not being met as things are now. Its not that he is not fitting in, its because they are not fitting in with your son.

It does sound as if something happened at the day centre, could he have been restrained by several people when he had a meltdown? this could have frightened him so he is now refusing to go. Experience carers should not need to restrain they should instead have stategies in place.

Shared lives could be unsettling for him unless the family/people caring for him are very knowlegable on autism but this could be another change for him especially if they cannot meet his needs as it could take some time for them to get know him... then he will be moved again.

You need to tell them what your son needs and not what they offer you/him.

I hope i do not sound too negative but having gone through similar situations, i can only say through experience...

I hope some of the above helps.

Good luck with your meetings.

Orange45 profile image
Orange45 in reply to Lucacielle

Hi, thanks for you advice and no I do not think it is negative at all more constructive and I appreciate your honesty.

He has had several meltdowns at the centre and when either of us has gone to collect him there have been several people there trying to calm him down as he is very agitated which to me maybe causes him to become the way he does. It has crossed my mind whether something has happened at the day centre. I have said over time again and again he likes to be out and about not stuck in doors. As he hasn't been going to the day centre due to Christmas holidays he hasn't wanted to go out at all the last time he went out with us was last Friday 20th December we did a bit of Christmas shopping and he was happy enough going with us and looking round the shops even though it was raining. But since then hasn't wanted to go out at all which isn't like him. I planned on taking him to York on the train overnight but he said he didn't want to go. I don't know with what has been happening at the day centre and him just being at home he seems to prefer that or could that be a sign for something.

Do you think he might be in the early stages of depression or do you think its more anxiety he maybe suffering from? with what I have told you about his behaviour. You said you have experienced similar situations with your son would you explain in more detail? or would you rather not?

I think with getting 1:1 support we can device a plan of all the activities he likes doing which I hope will stop him becoming agitated and anxious. Do you think he might be in the early stages of depression or do you think its more anxiety he maybe suffering from? with what I have told you about his behaviour. You said you have experienced similar situations with your son would you explain in more detail? or would you rather not?

Shared Lives I have thought whether it could work, it's just another option the social worker offered and by making a referral is the only way to see if there is anyone suited to his needs. Although I have my doubts.

Sorry I don't mean to go on it's a comfort to hear that we are not alone and by talking it is helping. Thank you once again for your opinion and thoughts on the matter.

Has he unassessed Sensory issues? could be he finds crowded places cause anxiety! a Level 3 Sensory assessment may unearth long awaited need for help, like Ear protectors, my girl likes Cd players with earphones to help her in these scenarios.

Orange45 profile image
Orange45 in reply to lecsmum

Hi Lecsmum, Thank you for your reply. No he hasn't been assessed for sensory issues yet although the day centre have mentioned this in the meeting we have had to help resolve the issues. He might be on the waiting list for this to happen. I have wondered about whether the staff at the centre are fully trained in how to deal with Autism as each individual is unique and one rule doesn't apply to all. He doesn't seem to have any issues with noise generally other than sirens ie police,fire, ambulance. He has never wanted to wear ear plugs or use headphones.

lecsmum profile image
lecsmum in reply to Orange45

Training is a big issue soon it will be made mandatory, look at the helpful leaflets on behavior on the PDA action group sites they may help explain behaviour and anxieties.

Hi, I am a mother to a 10-year-old autistic child. I had similar problems, my son wanted to stay at home. He began talking at the age of 6 after he started a new school, (despite attending two schools, who didn't understand him or meet his needs), th e new environment and positive nurturing made an immense difference. The new school tapped into him and found his learning style and it was all positive from there. He always used to come home agitated, distressed, due to what others were saying to him, these were triggers, these usually impacted on home life, he became very frustrated, coming home crying, upset, kicking, hitting and very challenging behavior for all the family to deal with. However, I have spent many hours researching and been on the Cygnet training course for parents with autistic children, which has helped me understand things from an autistic child's perspective. You have to wear the autistic glasses to understand them and their needs. However, since making changes with certain items excluded from his diet, a set routine is what he seems to like, my child is now much calmer, happier, talking about how he feels and is ready to engage and learn. I have been reading a book I bought on Amazon called 'the gut and psychology syndrome', it was interesting reading, I excluded cow's milk from his diet, as per what I had read and started him on alternative milk, camel milk, freshly cooked foods, mixed nuts, and vegetables. The dietary changes have helped not only him but also my daughter who has ADHD calm down. A website that may be worth a read is the Autism Canada website. I would also speak with your GP and see if blood tests can find any deficiencies.

Orange45 profile image
Orange45 in reply to Shine247

Hi Shine247, thank you for your reply and advice. I have come to realise over the Christmas period his normal routine had stopped as he wasn't going to the day care centres which I am convinced was causing these problems in the first place. I am in the process of looking at other options for him as he likes routine. He had a blood test done 2017 and the doctor said it was all good. We are taking him to the doctors for a health check so a blood test might be required again. Although he became very distressed when he gave blood the last time so I am concerned how he will react if it wants doing again. I have been reading a book called A Normal Family by Henry Normal which is amazing I truly recommend and also a book called The reason I jump by Naomi Higashida he's a 13 year old austic boy who wrote it with the help f others. This gives you an insight of an austic child and why behave as they do its very insightful. Up until the previous last 3 months we have had no real concerns of our son as he has always been happy, easy going and enjoyed going out and about nothing really fazed him, large crowds, noise nothing bothered him. Like I said earlier I think it all comes down to the day care centres he has been going to as they don't understand him or they are ignoring his needs hence this is making him become irratated, agitated followed by a meltdown as he was never like this before. Nice to hear your son seems settled and happy as parents that would we strive for, for are children to be in a happy state. Once again thank you for sharing your thoughts I really appreciate it.

lecsmum profile image
lecsmum in reply to Shine247

Very well said indeed!

Hi Orange, I agree routine is important for autistic people. However they are also gifted individuals who are not understood by some professionals who work with them. It's sad for the child not being heard or understood. Professionals who have no autism training or understanding are not the ideal people to be around either. Thank you for sharing the book you've read as well. Good luck and I hope everything falls into place again.

Sounds Like Sensory issues has he ever had a Sensory assessment?

Orange45 profile image
Orange45 in reply to lecsmum

Hi Lecsmum, thanks for your reply, no he hasn't, looking into that at the moment. Thanks

Hello I have read the string of comments responding to your initial post. I wondered how things went at the doctor? I wondered if the psychologist had been able to help? It did seem to be possible that the responses to the anxiety he was showing at the day centre could perhaps be increasing his anxiety levels? In your position i would be thinking about asking for a clearer picture of what triggers the problems? I am new to this forum and was moved by your situation. I hope you find a way forward.

Orange45 profile image
Orange45 in reply to Gus56

Hello Gus56, thank you for reading and responding to my post. When visiting the doctor he became very agitated on both times we took him to see the doctor. However managed to request blood test with the nurse for different day unfortunately that wasn't a success either so they arranged for the community disability nurse to make a home visit that too was unsuccessful as he became agitated. So at present he is at home all day everyday as he didn't want to go back to the day centre which I understand. Things became very bad as he refused to leave the house for 2 weeks but managed to coax him out to Asda which he normally liked going while at Asda he had a meltdown but he managed to calm down after a while. Moving forward he seems a little like he used to be as he is going out a little. We took him to the group he used to go to, to see whether that might help but he instantly became agitated once again and we left, but he calmed down a few minutes later and nodded off in the car. I contacted the doctor and also the psychologist for medical support as I think he is in need of some form of medication to help with anxiety or something. A blood test is needed but he won't have one done and that is necessary to rule out any under lying medical problems. I am waiting to hear back from them today to see where we go from here as we are unable to cope. Once again thanks for reaching out.

Hmmm. That's really tricky. I wish I could think of a brilliant suggestion to help. I imagine sometimes being bombarded with questions and suggestions doesn't always feel ok? The only two things I was wondering were:

1. Would the medics consider issuing a calming med (valium?) Prior to the nurse coming to take blood?

2. Could you try to keep a record over a week of all the times and situations when he is calm and the situations that trigger anxiety? It might help to understand and perhaps see a tiny way forward?

Sorry if that's not helpful but I would keep badgering the medics for help.

Orange45 profile image
Orange45 in reply to Gus56

The learning disability health team are looking into it to see what to do. So we have to wait and see. My son's doctor has never come across this situation so he also is looking at the mental health team to assist. It's just so frustrating and we feel helpless as to help our son at the moment.

Gus56 profile image
Gus56 in reply to Orange45

I'm glad you have a team supporting you and your son. When things are wrong for our children it's so tough. Good luck with it.

Oh my word, I've just joined this forum and read your posts, it was like reading the exact story of my daughter's life over the past 20 years, including the day centre part, near identical. For 3 years now she has become almost agrophobic, I am the only one who can get her to go out, and sometimes not even for me. Anxiety is the root of the problem but anxiety brings on other problems, in my daughter's case, stomach issues. Its a vicious circle.

She's been on an antidepressant for years but it doesn't stop the anxiety. All sorts of advice and medical opinions have been thrown at us which hasn't helped, in fact on occasions made things worse, we've had some real bad experiences.

12 months ago I found a new gastroenterologist who confirmed my theory, it's all down to anxiety, a common problem with Autism.

So now I just "manage" the mood swings with stomach remedies.

She also seems to have learned that if she goes for a lie down after every meal the pain in her stomach is eased.

Also, when I do manage to get her out for a good long, quiet walk she's always so much more relaxed after.

Turning 21 seems to be a crucial age, maybe hormones, Im not looking forward to the next, the menopause !

You know your son better than any expert, you will find your own ways to help him. There will always be anxieties but you will be the one who helps him manage.

My girl always sleeps better when we've had an hour or so of listening to music together before bed.

My motto is, and I stick by it, mood swings and aggression are always down to pain, mental pain (anxiety) brings on physical pain, every time.

Good luck, I hope you find the answer asap.

Wow reading your post and I feel like your talking about my 30 year old daughter. The stomach issues seems never ending

Hi Cazzy07 I'm guessing that like me you've probably tried all the stomach related remedies, my cupboard has them all !!

I'd be very interested to hear your story and experiences

Hi Creamcrackers20, Thanks for reading and replying to my post. Things are starting to improve very very slowly as he is sleeping better, no blood test as yet but luckily have the community learning disability team looking into that to support us. Not wanting to go out but has asked to go to Asda on occasion and seemed happy enough whilst there. I know it's going to be a slow process for him to be anywhere near to how he used to be. Fortunately he doesn't seem to have any food or dietary issues. You think you are the only one dealing with issues relating to your child/adult until you join a forum like this and read other posts people have put on you then realise your not alone and people will reach out to you and respond with their own experience of dealing with similar issues. I hope things are getting better with you and your daughter I have learnt to take each day at a time. Thanks again for reaching out.

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