Everyday Life Consequences of Substance use in Adult Patients With a Substance use Disorder (SUD) and Co-occurring Attention Deficit/Hyperactivity Disorder (ADHD) or Autism Spectrum Disorder (ASD)

A Patient's Perspective

Linda M Kronenberg; Karin Slager-Visscher; Peter JJ Goossens; Wim van den Brink; Theo van Achterberg

Disclosures

BMC Psychiatry. 2014;14(264) 

In This Article

Results

For both patient groups (SUD + ADHD N = 11; SUD + ASD N = 12), the need for care according to the EuropASI[11] was very similar to that of the total group of eligible patients (N = 63) for 5 of the 8 EuropASI domains. Only small differences were detected for the other 3 domains. More SUD + ADHD patients in the current sample were living alone and in both diagnostic groups in the current sample more patients were employed compared to the total eligible group. However, the differences were small and we thus conclude that the research groups were comparable to the total group of eligible patients.

The interviews with the patients lasted 60 minutes on average. The two patient groups were similar with regard to most socio-demographic characteristics; they only differed on gender composition and primary substance use. The SUD + ASD group included only males and 10 out of the 12 patients reported alcohol as their primary substance of use. The SUD + ADHD group included three women and eight men; primary substance use varied (see Table 2).

Comparison of the initial steps in the coding and analysis of the interview transcripts showed that the researchers had selected the same statements as significant, assigned largely similar content codes to the selected statements, and also grouped the coded statements into similar themes.

Following the seven-step analytic procedure, the everyday life consequences of a dual diagnosis of SUD and ADHD or SUD and ASD were found to revolve around three main themes: (1) jumbled thoughts and emotions, (2) ambiguity of substance use, and (3) structure.

In the following, we further describe the everyday consequences and supply illustrative quotations (with the patient group and respondent number indicated in parentheses).

Jumble of Thoughts and Emotions

Both groups stated that they experience a jumble of emotions, including anger, distress and anxiety. Participants also said that they did not recognize emotions very well, and had difficulties understanding them. Furthermore, they were not able to handle their emotions and found it hard to sort them out and to put them into perspective. They often failed to make the connection between event and feeling, and vice versa.

Distressed, sad, happy…. those things actually blend in my case, so to name how I'm feeling, that's hard to do. (…) And that's what sometimes happens to me, that I'm really not feeling good and things just get worse because I can't figure out the reason why.(SUD + ASD 2)

The jumble of emotions experienced by both groups of patients led to a vicious circle of negative thinking and feeling which led to vicious circle of symptoms and substance use. Both groups mentioned getting caught in this vicious circle and not being able to get out of it by, for instance, stopping the flow of negative thoughts and emotions.

That's because of us [people with ADHD] thinking that fast and much, and often we [people with ADHD] fill in many things by ourselves, and pick things up, a lot. That's why things come on stronger to us [people with ADHD]and stick longer.(SUD + ADHD 11)

The patients in the SUD + ADHD group frequently stated that they could not handle the flood of thoughts and emotions which they experienced. This could lead to agitation, which could trigger further impulsiveness. What is meant here is that patients cannot put the break on and therefore race past their own and others limits with serious negative consequences, such as using more addictive substances and/or experiencing more interpersonal conflicts.

In contrast, patients in the SUD + ASD group frequently expressed that the overload of stimuli caused by the jumble of thoughts and emotions made them passive and melancholic. This obviously had a negative impact on their quality of life. Feeling lonely and searching for some perspective in life are frequently mentioned by patients with SUD + ASD. In a relationship or similar contact, passive and melancholic feelings were also often reported to stand in the way of sexual activity.

I always go on, and on, and on (…) you just get tired and more tired. The consequence of this is becoming less focused, and that makes you more and more impulsive.(SUD + ADHD 11)
Especially when I'm tired and worn out, I become very hyper (…) then you go bouncing. Becoming more inefficient. (…) what I'll often do then, when I'm totally worn out, is use drugs … really lots of them….(SUD + ADHD 7)
I've got the idea that I can get lost in my head, in thought, which makes me lose time sometimes and that is what's keeping me from getting to action. (SUD + ASD 3)
By now I know my mind is processing data very slowly, and if I want to live a pleasant and meaningful life then I'll have to stop working as hard as I did before and I shouldn't want to anymore. But that's a hard nut to crack. (…) and to me that's still intense and it really makes me worry about if I'll get a girlfriend ever? Will I ever get to live with someone? (…) And sometimes that really makes me sad (…). It makes me feel lonely. (SUD + ASD 2)
I was longing for a relationship for a long time, because that's the standard. However, it being the standard is not a very good reason to have a relation, I guess. (…) I've been in bed with a girl sometimes, and then I'm lying there and I just don't know what to do, how to act, what's normal. (SUD + ASD 4)

Ambiguity of Substance use

Substance use was reported to serve a clear purpose for both of the patient groups. It suppressed the jumble of thoughts and emotions, the agitation, and the melancholia. For the SUD + ADHD group, substance use served to decrease the level of hyperactivity but was also often boundless: one bottle of beer led to the drinking of an entire case. For the SUD + ASD group, substance use was reported to help suppress the jumble of thoughts and emotions, to help them relax and get through the day, and to help them escape feelings of pure boredom.

Giving myself a bit of peace, so it doesn't get out of control. That my brain stops thinking, particularly. Stops going on, and on, and on.(SUD + ADHD 8)
Then we had children, and the stress got higher. (…) Well, I started drinking, just to inhibit the stimuli, to subdue them. (….) that helped me get through the evening. It was just to survive, not for the booze.(SUD + ASD 3)

At the same time, the patients from both groups reported substance use to worsen their symptoms and the problems stemming from their ADHD or ASD.

Especially when I had a relapse or used again, then I noticed becoming disordered for a long period. (…) and that's when you let impulses rule you.(SUD + ADHD 11)
It has the effect that I don't function properly, and that I hardly eat (…) Everything gets worse by using.(SUD + ASD 10)

Stopping with substance use was reported to produce clear benefits by most of the SUD + ADHD patients. They experienced better physical and mental health as a result of quitting. They nevertheless indicated that quitting was a struggle because everything which their substance use had suppressed came to the surface … and then more intensively. They further observed that balanced use or controlled substance use in moderation was something which they could not manage and therefore not an option.

I can't restrain that, I just do it. I'll blow, quaff or snort, there's no restraint whatsoever. I can't go and drink one beer, one beer becomes a case.(SUD + ADHD 6)

One of the SUD + ASD patients reported that it had been relatively simple to stop and that he was not using anymore, but the remainder of the SUD + ASD group reported still using. These patients also reported searching for a way to achieve a kind of balanced use — mostly with professional guidance.

… I have decided that I won't be quitting drinking fully, because I noticed a great part of my social life will be gone and to me that's not worth it, and I don't know how it could be done without the booze.(SUD + ASD 2)

Structure

Both groups indicated that structure made them function better in many areas of life: daily activities, social relationships, finances, physical health, and sexuality. Having daily activities, a job, and family further helped them structure their lives and gave it meaning. Structure contributed to break out of passivity and control impulsiveness.

But, if you get me sitting at home, then you've got another alcoholic, that doesn't work out. To me, that's my structure, my work and so forth.(SUD + ADHD 5)
A company for career counselling helps me to reintegrate in work, and I told them I don't want to work in a big warehouse or with a boss or colleagues that will rouse me, because that will go wrong. And I don't want to go back to my old lifestyle, that I'll just have to smoke a joint in the evening.(SUD + ASD 6)
I noticed that when I neglect the housekeeping I also get more noise, more thoughts in my head (…) so I am very occupied with getting more discipline in housekeeping.(SUD + ASD 2)

Both groups further noted — as indicated in the preceding and following quotations — that substance use disorganized their lives. In a vicious circle, lack of structure contributed to substance use and substance use contributed to a further lack of structure.

When I don't have a reason to get up in the morning (…) then I tend to stay in bed and take it easy. I'll smoke a joint in the morning and will go back to sleep again. So, I noticed, I need structure in my life.(SUD + ADHD 3)
I find it hard to fill my time — I don't have many hobbies — although structure is very important. It happened that I got so bored that it made me think: let's drink tonight, so tomorrow I'll sleep it off and then another half day is filled.(SUD + ASD 5)

Patients in the SUD + ADHD group reported frequent problems with the actual structuring of activities. They mentioned knowing what they wanted to do, having the necessary skills for social relationships or to make plans, and believing that they could handle matters effectively. But they found it hard to prioritize, keep focus on the task at hand, and stay tuned into to not only their own needs but also the needs of others. The result was major difficulties with maintaining structure, sustaining relationships, and managing finances.

I plan my time very inaccurately, and that takes a lot of energy, takes a lot of effort. (…) Yes, that's the result. I get distracted by impulses, and I get distracted easily, and that is what makes you spend time on the wrong things.(SUD + ADHD 11)
I don't know what to do if someone shares his emotions, that makes me become very nervous. So I'll walk away. I had an affair with a woman for four years, and when things went wrong I walked away. I don't know how to handle that. That's not my cup of tea.(SUD + ADHD 5)
A lot of debts, once 3000 euros (…) because of my impulsivity, of course. Not because of using weed, no, I just bought all kinds of things.(SUD + ADHD 10)

The SUD + ASD patients also experienced problems with structure but, in contrast to the SUD + ADHD group: they hardly knew how to spend their spare time, how to initiate a social relationship, and how to handle other matters; such as their finances or household.

Things get into a routine, that's what I don't recognize. (…) It may happen that I don't get myself to work or do other things for half a day (…) things seem to get stuck in my head, like a needle in the groove of a record, and I can't get out of it.(SUD + ASD 11)
It doubles the handicap that you've got, makes it really hard to take stock of situations. And the drugs make you think even more … like … well … like passive. You get even more passive. (SUD + ASD 6)

The thought of starting a social relationship or becoming socially active is reported to make most of the patients in the SUD + ASD group feel anxious and insecure. They reported not being able to easily join in with others and use substances to help them do this. Substance use suppressed feelings of insecurity and overstimulation/oversensitivity, made it easier for them to tune into people/situations, and helped them focus and react during interactions.

But, when I have got to sit in sober, that really gives me the jitters. (SUD + ASD 5)
… it [using alcohol] makes it easier to put things in words, put it in words more quickly, react faster.(SUD + ASD 3)

 

A number of the patients in the SUD + ASD group also reported lacking sufficient insight in their finance, because they did not take initiative and felt they were not able to keep track of their finances.

I handed over financial and administrative matters to an administrator, voluntarily. In the past, those were daily activities that I didn't get to. I noticed it, of course, that pile of bills lying there. But no, I was too scared to start on them.(SUD + ASD 4)

Overall, the interviews showed the patients getting caught in a vicious circle of symptoms and substance use in every life domain.

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