Does mild autism exist? And if it does what does it look like?

Written on 25th Oct 2013 by Sylvia Lowery

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‘Mild autism’ is a term that is often used to describe individuals who have a normal to high IQ and full language. Individuals with autism and parents have been asked to share their feelings on this emotive topic. 

 

Which terms should be used?

 

 

The American Diagnostic Manual 5 has placed all autism under the umbrella Autism Spectrum Disorder. It is argued that autism is a spectrum condition, and the different terminology that is used just causes confusion. However this is controversial. A lot of individuals with a diagnosis of Aspergers Syndrome like the term and feel threatened by these changes.

 

Gary Burge an autism advocate who has Aspergers Syndrome said, “The changes to the DSMV don’t reflect me as I don’t have an Autism Spectrum Disorder which makes me sound broken, damaged and needing to be fixed!”

 

There is also concern that children may miss out on a diagnosis, and not get the help they need.

 

Anna Kennedy OBE says, “There is no official diagnosis has mild autism. People usually refer to mild autism if they are referring to Aspergers Syndrome. Personally I don’t think it is a useful term, and could mask support that a child may need because of this term being used. I differentiate between Aspergers Syndrome and Autism. Children who have a significant language delay have Autism, whereas children with Aspergers do not. This is my personal opinion. I think Aspergers should be a separate diagnosis, and so do a lot of people who have the diagnosis of Aspergers Syndrome.”

 

Here are some personal accounts of how individuals with full language and an IQ within the normal range are affected.

 

Tina Berry a mum who has autism herself and who has twins with autism says, “I have twins, one considered much more “mild”, yet he is the one who has needed the most intervention over the years. The milder twin has high IQ but this comes with high anxiety and depression, and greater awareness of his difference. Authorities said his autism was so mild he didn’t need help, boy were they wrong. Glad we fought them. He had to be placed in special school, while his more severely affected twin was always mainstreamed. Much harder to get him the help too. I’m one of those parents who got diagnosed after my kids did. Sensory issues got worse when I developed chronic pain. Social interaction is exhausting, so not many relationships. My husband is also autistic.”

 

Kevin Healey an ambassador for autism whose twin brother is severely affected and needs 24 hour care in a nursing home says, “My twin is non-verbal with very complex needs and has nursing care 24/7. My opinion is that there is no such thing as mild autism, though some may disagree with me. I have issues reading body language, communication, social interaction etc., and more. Autism is autism no matter how you look at it. It is a very complex, hidden condition. Each person with autism is different. we aren’t all the ‘rain man’. Each person has their own abilities and complex needs. It’s different for all.”

 

Rachel Williams a mum of a child with Autism, “Oh, where to start lol! My brother actually said to my husband that Zoë only had it mild! My daughter comes across as mature for her age because her speech is like an adult. But her issues are complex. She cannot follow instructions, she has so many sensory sensitivities and problems, she cannot identify and display a number of emotions. She also has a friend who is a shell! When she’s not in school she is a full time job. She won’t wear certain clothes which causes major problems as although I buy her the things I think she will wear, it can be very random. We have had to totally adapt our family life to Zoë’s needs and I know that her Aspergers is having a negative effect on my son., and it is a constant feature in our house. That’s all I can think of now but if you need anymore information I would be happy to help as I am struggling with this particular misconception and would love to enlighten people!”

Helen Frackelton says, “Matt has always been classed as high functioning mild aspergers. In all our letters it states Matthew has o c d as a child with autistic traits, matt has sensory problems as a child with autistic traits! And so on! So the problems we come up against is because he not FULLY autistic ( how you can be half ASD is beyond me) we are limited to help.

 

 

Gem Maloney a mum whose child has autism and attends a special school says, “Today has left me exhausted, sad, annoyed, all the emotions possible! Tom was hyper from 5.30am this morning, clapping, squealing, no eye contact, jumping then went on to have huge meltdowns at school, threw a mug at his teacher, refused to come in out of the rain and mud, I could go on but it depresses the living poo out of me. He’s such an ace little lad tho and my heart breaks for him as his difficulties, almost identical to Rachel Williams little girl, make his life so much harder than everybody else’s  I find it difficult to express even to very close family and friends the everyday issues we have. People see him when they visit us and 99.9% of the time he’s ok: his needs are being met, due to visitors, attention can be spread between him and his little sister therefore letting a bit of pressure off. We still have friends who don’t understand why he has to attend a specialist school. His explosive behaviour has only been seen by a select few, but it dominates our lives. Chris and I are knackered, his little sister is being effected which hurts us too. Some moments of the day can be amazing, but in the blink of an eye, something will crop up that Tom can’t seem to cope with and it all snowballs. I hate the word “normal” but that’s what Tom looks like, before I had Tom, if I’d seen a child behaving the way he does, I’d assume them just to be really naughty! It’s so unfair.”

 

 

Tracy Alexander says, “My daughter is perfectly behaved at school because she is a rule follower and doesn’t want to show her anxiety. Then we have the impact at home. The most accurate comment I hear from a specialist teacher is that ‘Your daughter is like a swan. She can appear serene and calm but if you look under the surface she is paddling like mad trying to keep up’ I thought it was a great way of describing those children on the spectrum who internalise rather than act out (which long term can be very bad for mental health too). “

 

 

Individuals with autism or Aspergers Syndrome are very vulnerable to mental health conditions, particularly anxiety and depression. This is particularly a problem in late adolescence and early adulthood. Research with individuals who had been diagnosed with Aspergers Syndrome found that 65% of participants had symptoms that would fit a diagnosis of a psychiatric disorder Ghaziuddin et al (1998). This is made worse by the way an individual with autism will often keep these feeling to themselves and withdraw into obsessive compulsions. If you would like to read more about this please click here.

 

 

The perception that a person can have ‘mild autism’ is causing a lot of problems for individuals with autism and their families. Parents are left feeling desperate for help but are told they can’t have help because their children are ‘high functioning’. They also find it difficult to get access to mental heath professionals. Alex visited the Doctor over his anxiety last year and was referred to the mental heath nurse. She was very sympathetic but concluded that the anxiety was part of his autism and she couldn’t think of anyone who had enough expertise to help. I am studying Psychology and mental health through the OU and basically try to help Alex myself. Alex is coping because his public speaking and passion for raising awareness of autism gives him a real sense of achievement. 

 

 

Jo Rose whose 10 year old son has been diagnosed with Aspergers Syndrome and Hyper-mobility Syndrome  has found it difficult for her son to get the help he needs. She said, “They told me they’d help if he was low functioning, I can’t get my son help other than what school offer. I just don’t understand why they keep telling me they can’t help cos it’s not low functioning autism. I have been told they think because he has no learning difficulties he doesn’t need support. Eating/sleeping disorders, ocd, anxiety depression & self harm are part of Aspergers so they they cant help. CAMHS wont even see him.”

 

 

 

If you don’t have ‘mild autism’ how do you distinguish between those who are like Kevin Healy‘s twin brother and have complex needs and need 24 hour nursing home care?

 

 

Parents whose children are severely affected often find it difficult to see how this child who can speak and appear ‘normal’ can even have the same condition as their own child. There are children whose self abuse is so profound that their families are unable to care for them without a lot of support.  Alex was diagnosed at 4 with Classic autism. I remember the feeling of complete isolation and fear as I imagined this terrible future. As Alex progressed I remember thinking , “once he has learnt this it will all be OK.” But then when a certain skill was mastered a whole load of new difficulties would be uncovered.

 

 

It’s like climbing a mountain and just as you reach the top you realise there is another vast mountain to climb that you couldn’t see. Alex has moved into the high functioning autism group as he has had therapy and grown older. However he is 20 and still needs support. He has a lot of anxiety issues and struggles to make friends with his peer group. He is doing very well but I spend a lot of my time helping and supporting him.  An individual with high functioning autism has a high awareness of the difficulties and this causes a lot of anxiety and depression because they want to do all the things people their own age can do but find they often can’t. I know how hard it is to be kept awake all night and have a child screaming and self abusing and I can understand the temptation to feel those whose children can talk and appear normal have nothing to complain about. But I have walked in both shoes and autism is all encompassing and full of difficulties and complex needs whichever end of the spectrum you might be talking about. You can have a mild cold, or a mild rash but not mild autism. I feel all of us who are affected by autism should stand together and work to raise awareness and understanding.

 

 

Researchers found that the percentage of children with autism rated by their parents as sometimes to very often contemplating or attempting suicide was 28 times greater than that of typical children, the high incidence of bullying of children with Aspergers Syndrome was a contributing factor in these suicidal thoughts. To read more about this click here.

 

 

 

Dadka Jednickova feels he is happy with the term ‘mild autism’ he gives his feelings here. “It is more about the opinion. as the affected people vary a lot in their symptoms, they have something common with autism. And for that reason I do not refuse terms such as ‘mild autism’ or ‘mild form of autism.’ This gives an idea to people who would otherwise have no idea what  Aspergers syndrome is. I consider myself to be a mild Aspergers. It took me years and years wondering what was wrong with me. I am definitely not an autist in its difficult form, but neither do I feel like most of the ordinary people. What is more, I  do not feel to be too heavily affected with my condition. I have learned to manage myself and have quite a comfortable and successful life, at least on the professional and private level. My social life is a different story. along this, I have certain traits of Aspergers, scoring 41 in baron-cohen test, but these do not make me having difficulties walking on the street, having chat with people, looking into their face, etc. Loud noises bother me, I am light-sensitive, I do not need to socialize too much, I get lost in details and the whole topic sometimes and want to understand things to their very tiny bits… I do not mind being labelled with both: a mild  Autist or Asperger as long as it brings an understanding of the condition to the general public and rise an awareness of the condition. Is the autism fixable, btw? It can be managed to some extend, but I do not think that anybody once having this will once stop being an autist. At the same time I would like to be like others and get rid of my difficulties (while keeping the advantages of my condition, lol). Why the hassle about being fixed? Whether an Autist or the Asperger… if they have bothersome problems, they benefit from methods of how to overcome them, manage them, actually partly “fix” them. Aspergers also have mental health difficulties that come with the condition, they may just be less severe. to conclude: mild autism or a form of mild autism sound as acceptable to me as the Aspergers, but the latter should be a description of the severity of the former. we definitely have a lot in common with autists.”

 

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