Autism and pharmacology. An ADHD/autistic person’s experience and critique.

[CW: Suicide ideation, bad drug side effects, bias research most likely]

DISCLAIMER: THIS IS NOT MEDICAL ADVICE, I HAVE NO QUALIFICATIONS, INFORMATION IS ONLY TO BE VIEWED AS IS. DO NOT STOP TAKING MEDICATIONS WITHOUT TALKING TO A DOCTOR/PSYCHIATRIST FIRST.

ANOTHER IMPORTANT NOTE: IF MEDICATIONS WORK FOR YOU – THAT’S VALID – THERE IS EVIDENCE THEY CAN WORK TOO!

THIS IS JUST MY EXPERIENCE IT WON’T BE UNIVERSAL. I’VE PERSONALLY HAD REALLY BAD SIDE EFFECTS FROM MEDICATIONS – I AM BIASED AGAINST THEM.

Read my disclaimer again.

Read it. This is not medical advice.

This will be BIAS. I have had very bad experiences with mental health medications and I honestly have felt like a labrat most of the time, I have extreme bias in this area – but i’ll show some studies and provide evidence for my claims – these probably have a selection bias [I’m also only using studies since 2013 since the updating of the DSM-5 – unless they are used to justify prescribing stuff].

I’ve tried to be as impartial as I can, but it’s really hard for me when finding evidence and comparing it with my own experience…

AGAIN:

THIS IS NOT MEDICAL ADVICE, I HAVE NO QUALIFICATIONS, INFORMATION IS ONLY TO BE VIEWED AS IS. DO NOT STOP TAKING MEDICATIONS WITHOUT TALKING TO YOUR DOCTOR/PSYCHIATRIST FIRST.

Autism has been signaled by some to have a pharmacology problem

This isn’t just my view… this is also a view that has been talked about in esteemed scientific reporting publications recently:

The Andrew Wakefield controversy

Vaccines DON’T cause Autism… But disproving this theory as well as the implications and methodology that were used are going to be highly applicable here.

For those who don’t know here’s a decent summary of the study and issues around it which has been disproven EVERYWHERE at the cost of advancing more useful Autism research.

Here’s the pull quote from the article linked above that’s relevant

A good study will include many participants, and Wakefield’s study included only twelve children. Also, a study will normally focus on one particular disease, disorder, or condition, in order to make the data manageable and to allow for reasonable interpretations from the results.

Andrew Wakefield’s Harmful Myth of Vaccine-induced “Autistic Entercolitis”

It’s time to look at evidence behind prescribing medications to treat autism…

I will look into classes of drugs here – they have categories – some have more rigorous evidence than others, but I really want you to take a note of how many participants and what age they are. I also want to note that in review studies a lot of the reporting on whether these drugs have helped or hurt has come from parents/caregivers of people with Autism, rather than those with Autism themselves.

There are a few studies that I will be pulling primarily from here as well as Australian recommended (not official) prescribing guidelines based on evidence:

In the following sections I will use my own personal experience – then analyse the science behind prescription.

This is from an Autism/ADHD ONLY perspective – I am not able to speak to the effects of these drugs in confidence for any other group of disorders as I have no lived experience and have not done research into efficacy, issues etc.

Anti-Depressant Medications – Selective Serotonin Reuptake Inhibitors (SSRIs) and Serotonin-Norepinephrine Reuptake Inhibitors (SNRIs)

Generally known as classes of ‘anti-depressant’ medications – have been used for other things – but this is their main purpose.

My Personal Experience with SSRI/SNRI medications.

I have been prescribed a lot of these, I actually only have major depressive disorder in winter (known as Seasonal Affective Disorder(SAD)).

I believe I have “treatment-resistant depression” which I have not been diagnosed with – but I meet the diagnostic criteria to feel comfortable enough to self-label like this.

I also was never diagnosed with Autism while on these – I have only been diagnosed this year.

A quick summary of my prescription history with SSRIs, and my perceived side effects:

  • Fluoxetine (Prozac) [SSRI] – Prescribed at 26 for depression. No obvious effect, still suffered depression.
  • Venlafaxine (Effexor) [SNRI] – Prescribed at 28 by a public psychiatrist when I looked to get diagnosed for ADHD – told it was my existing depression – changed my medication to this. This is the drug that caused the worst side effects in me – massively increased suicide ideation, full body central nervous system ‘zaps’ when moving. Told to persist with these extremely negative side effects for over one month. Got really close a number of times to committing suicide, it was all I thought about.
  • Citalopram (Celexa) [SSRI] – Prescribed at 29 after a break taking anything for my “depression”. No effect. Still depressed.
  • Sertraline (Zoloft) [SSRI] – Prescribed at 31 after lack of results with other SSRI’s. This has an effect, it definitely reduced my suicide ideation – this was gone most of the time except for really bad days. I was still extremely depressed, but not suicidal. The downside here for me majorly is I lost all joy in life – it stunted my emotional range significantly – I discussed with doctor and weaned off this in 2018, but had to resume after a number of really bad things happened to me, until weaning off again in 2019.

I gained a lot of weight on SSRIs. I also had a slowing metabolism due to aging. However I have tapered off all of them now and my weight has stabilised.

My review of evidence for SSRIs and SNRIs for treatment of ASD/Depression

So I am just going to quote pull quotes from papers here – these are not my words but the words of the scientists.

given the limited evidence for the efficacy of SSRIs … in ASD, the use of these drugs should be limited to selected cases

Use of psychotropic drugs in patients with autism spectrum disorders: a systematic review

A second systematic review focused on SSRIs (fluoxetine and citalopram) for the treatment of core features of ASD at 12 weeks. No significant differences were found between citalopram and placebo or fluoxetine and placebo on any of the rating scales used by the researchers.

Antidepressants in Children and Adolescents: Meta-Review of Efficacy, Tolerability and Suicidality in Acute Treatment

The NMA included 34 RCTs investigating 14 antidepressants and placebo. It concluded that, of all included antidepressants (amitriptyline, citalopram, clomipramine, desipramine, duloxetine, escitalopram, fluoxetine, imipramine, mirtazapine, nefazodone, nortriptyline, paroxetine, sertraline, and venlafaxine), only fluoxetine (data taken from 9 RCTs) was more effective than placebo (SMD −0.51, 95% CrI −0.99 to −0.03) in improvement of depressive symptoms

ANTIDEPRESSANTS IN CHILDREN AND ADOLESCENTS: META-REVIEW OF EFFICACY, TOLERABILITY AND SUICIDALITY IN ACUTE TREATMENT

Venlafaxine was associated with a significantly increased risk of suicidal behavior or ideation when compared with placebo (OR 0.13, 95% CrI 0.00 to 0.55) and also with five other active antidepressants (namely, escitalopram, imipramine, duloxetine, fluoxetine, and paroxetine).

ANTIDEPRESSANTS IN CHILDREN AND ADOLESCENTS: META-REVIEW OF EFFICACY, TOLERABILITY AND SUICIDALITY IN ACUTE TREATMENT

I’m super dark here. I did a bit of research and I found one of the most egregious studies for statistical manipulation, bad sampling and advice to prove a hypothesis when initial statistical measures failed – it’s on Venlafaxine treatment for Autism Spectrum Disorder.

I’ll link it below. THERE ARE SEVEN NON-PLACEBO SUBJECTS IN THIS TRIAL – ONE WITHDRAWS. This is their conclusion – no conflicts of interest declared:

Despite the small sample sizes, this study documented a statistically significant effect of venlafaxine. Moreover, we showed that lower doses of zuclopenthixol and clonazepam were needed in the venlafaxine group, although this difference was not statistically significant. This was confirmed by multivariate analyses, where this difference reached statistical significance when using a combination of variables involving zuclopenthixol. Larger-scale studies are recommended to better investigate the effectiveness of venlafaxine treatment in patients with intellectual disabilities and ASD.

Using venlafaxine to treat behavioral disorders in patients with autism spectrum disorder

If twelve is not enough to draw this sort of conclusion in vaccine and autism link science. SIX IS DEFINITELY NOT ENOUGH. If you read the study it’s a near perfect horror story in bad science. This study is often included in the meta-analyses/statistical reviews that I look at as a reliable source.

Anti-psychotic class medications

I only have experience with two medications here. I don’t have experience with the main one they use to treat behavioural problems in children. I will again list my personal experiences and then the results. I will talk about some of the science behind others I have not been prescribed.

My Personal Experience with anti-psychotic medications

I was put on anti-psychotics last year – I believe now that I was going through Autistic Burnout – I basically started breaking down in real life, all the time, my mood was uncontrollable, I’d dissociate for hours on end, I’d get locked in OCD like patterns. I started self-harming, I also ended up attempting suicide for the first time ever. I was starting to fall apart before this happened so that needs to be taken into consideration when I talk about these things.

  • Quetiapine (Seroquel) – Prescribed at 36, when I was on it at my full dose (200mg), it did calm me down. It worked, but I was an absolute zombie – I couldn’t think and would often just sleep. When the effects of it wore off – the rebound effect was extreme. During one of these rebound periods, due to missing a dose I attempted suicide. I did have external extreme factors here but I really felt – not in control – probably more so than before I started it. I realised it was affecting my mood really badly when we came out of winter and I was still wrecked with anxiety and depression. I started tapering off, and it made me stabilise. I also got peer support throughout this time that helped me. I can’t differentiate which of these helped me but I believe personally that peer support and tapering together helped me get out of “crisis”.
  • Olanzapine (Zyprexa) – I was given this to help me sleep after complaining about the effects of Quetiapine. I lasted two nights – it gave me unbelievable restless leg syndrome to the point I wanted to cut off my leg to stop it. It was so intense. My psychiatrist was very understanding in stopping this quickly.

My review of evidence for anti-psychotics for treatment of Autism

I’ll review them all individually… starting with the ones I have taken – then going into ones that also have been mentioned frequently

Quetiapine:

….quetiapine, and finally olanzapine, with the latter two medications having negative net benefit scores 

Rating of the Effectiveness of 26 Psychiatric and Seizure Medications for Autism Spectrum Disorder: Results of a National Survey

11 subject study (8 boys, 3 girls) with Quetiapine – open label (not placebo controlled)

Short-term low-dose quetiapine treatment may reduce aggression levels and improve sleep quality in adolescents with ASD.

Low-Dose Quetiapine for Adolescents With Autistic Spectrum Disorder and Aggressive Behavior: Open-Label Trial

quetiapine showed mixed results; … therefore not recommended in the treatment of irritability in ASD

Pharmacotherapy of emotional and behavioral symptoms associated with autism spectrum disorder in children and adolescents

Olanzapine

 … side effects are more frequent with olanzapine and it should be considered when choosing antipsychotics for ASD

Olanzapine, risperidone, and aripiprazole use in children and adolescents with Autism Spectrum Disorders

At present, due to small sample sizes and open- label studies, there is insufficient evidence to show that antipsychotics such as olanzapine, quetiapine, ziprasidone or clozapine are effective in autism spectrum disorder.

The role of drugs in the treatment of autism

Risperidone and Aripiprazole

Assistance with managing aggression and irritable behaviours may be obtained by using risperidone or aripiprazole, with risperidone having the most research-based data at present

THE ROLE OF DRUGS IN THE TREATMENT OF AUTISM

For both antipsychotic drugs approved for irritability associated with ASD as well as for other atypical antipsychotics, significant adverse effects such as sedation and extrapyramidal effects have been reported. Further, weight gain and an increased risk for the metabolic syndrome have been associated with these drugs.

Use of psychotropic drugs in patients with autism spectrum disorders: a systematic review

Although many children with ASDs are currently treated with medical interventions, strikingly little evidence exists to support benefit for most treatments. Risperidone and aripiprazole have shown benefit for challenging and repetitive behaviors, but associated adverse effects limit their use to patients with severe impairment or risk of injury

A Systematic Review of Medical Treatments for Children With Autism Spectrum Disorders

Stimulant Medications

So this is the one class of medications I’ve had significant improvement from. They help me with inattention issues, and I can usually focus with them. The science here is also the best – it far exceeds any other medication I’ve seen BUT ONLY IN PEOPLE WITH ADHD OR COMORBID ADHD/Autism. The issue I have here is that I have ADHD too. I don’t know if these effects I talk about here personally will apply to people who only have Autism.

My Personal Experiences with Stimulants

  • Methylphenidate (Ritalin, Concerta and other brand names) – This was the medication that I was first prescribed for my ADHD. I thought it was working for me, but it’s likely to have been a placebo effect upon reflection. I couldn’t get the drug to work over 6 years of different release forms, brand names. I had profuse sweating and tachycardia (increased heart rate) as permanent symptoms.
  • Dexamphetamine (Dexedrine, DextroStat and other brand names) – Dexamphetamine changed my life. It’s the only pharmacological treatment that has worked for my ADHD symptoms. I don’t mean this in a small way, I can actually do stuff I hate doing with Dexamphetamine. I don’t know how much of my Autism symptoms it reduces – I also had my mental health crisis after starting this medication but I do not think it’s related as effects have subsided, and it’s a short term drug that I wasn’t taking during my “breakdown”.

My review of evidence for stimulants for treatment of Autism

Methylphenidate

We found that short‐term use of methylphenidate might improve symptoms of hyperactivity and possibly inattention in children with ASD who are tolerant of the medication, although the low quality of evidence means that we cannot be certain of the true magnitude of any effect. There was no evidence that methylphenidate has a negative impact on the core symptoms of ASD, or that it improves social interaction, stereotypical behaviours, or overall ASD. The evidence for adverse events is of very low quality because trials were short and excluded children intolerant of methylphenidate in the test‐dose phase. Future RCTs should consider extending the duration of treatment and follow‐up. The minimum clinically important difference also needs to be confirmed in children with ASD using outcome scales validated for this population.

Methylphenidate for children and adolescents with autism spectrum disorder

Dexamphetamine

There’s no studies done here that are of statistical validity or otherwise – no results can be concluded. It’s shown to decrease ADHD symptoms in people with co-morbid ADHD. But not enough studies have controlled for this to make any conclusion.

Main issues

  • These studies are all small scale – the overwhelming majority of them focus on children and not adults.
  • Data is missing often for participants who drop out – reasons are not listed.
  • There’s ethics issues with doing wide-scale studies which makes prescribing medicines hard to do with scientific vigour.
  • All medications have significant side effects which may result in NET-NEGATIVE effects
  • Weight gain is a near uniform side effect across all pharmacological treatments for Autism, except for stimulants which suppress appetite.
  • Lack of placebo controlled double blind studies is a huge issue – considered the gold standard in research.

Conclusion

Pharmacological treatment of Autism is really not based on great science. There’s a lot of harm that can occur that I can speak to personally. It often feels like I am a guinea pig for the cure-de-jour. I think an article best summed up current issues – here’s the pull quote:

Overall, this review shows the important role of psychopharmacotherapy in ASD, and that both prevalence and patterns varies widely, with the prevalence of psychopharmacotherapy increasing with higher age and a higher number of comorbid psychiatric conditions. These findings probably reflect the lack of causal treatments in ASD, the high comorbidity rates, and—last, but not least—the pressure for clinicians to ‘do something’ to relieve patients’ symptoms and families’ distress. Nevertheless, given the limited evidence of effectiveness for some drug classes in ASD (e.g., antidepressants), clinicians should prescribe them only in selected cases. Moreover, if behavioural interventions are available, clinicians should contemplate to combine these with psychopharmacotherapy or even replace pharmacotherapy by behavioural interventions (e.g., in the case of ‘challenging behaviour’), as there is some evidence for effectiveness of behavioural approaches for these symptoms

Use of psychotropic drugs in patients with autism spectrum disorders: a systematic review

Only stimulant medication has worked for me but that’s probably due to my co-occurring ADHD.

That’s it, the other times I’ve basically been subject to side effects with little or no benefit. Because of this I am extremely skeptical of pharmacological interventions in autism treatment.

This kinda leads to my next blog post which is going to be challenging the medical paradigm as the main method of mental health support. It’s going to be a long one – this is the area of research I am now most confident in – and I can speak to non-pharmacological experiences that have helped me the most – more than anything except stimulant medication.

Published by roryreckons

I am an ADHD/Autism/OCD advocate and independent ADHD/Autism researcher. I am training in 2021 to become an ICF Accredited ADHD coach. I write mainly about ADHD/Autism/OCD/Mental health issues, but will also discuss morality, abolition, and current affairs occasionally.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: