My adult child just received an autism diagnosis. What should I do next? - Autism Awareness
The word autism and doctor showing little blackboard against field and sky. Adult autism diagnosis

My adult child just received an autism diagnosis. What should I do next?

Higher functioning individuals on the autism spectrum often go undiagnosed until school life ends and independence begins. When the routines and structure of school end and work or post-secondary education begins, young adults can start to feel the pressure. There are more decisions to be made, greater organizational skills required, less structure and an increase in social complexities. The parent-child relationship is often redefined at this stage of life. The young adult may want more independence from parents but may not understand how to do this.

Crisis can often lead to late autism diagnosis

All of these new challenges can lead to mental health issues such as depression or increased anxiety. The young adult often reaches a crisis point after struggling with the new demands of adulthood and failures in the areas of education, relationships, and/or losing a job. It can be at the apex of this crisis that a diagnosis is pursued and received.

Receiving a diagnosis can be difficult for the young adult and they will need help with this new identity.

Seven tips for those who have received an autism diagnosis as adult

1) Seek help: Seeking the help of a counsellor is a good idea so that the young person has someone to talk about their feelings and concerns. An adult support group may be beneficial so that the person has other people to talk to who are going through the same thing or are further along in the journey. Most local autism societies will have a support group for people on the spectrum. If yours doesn’t, ask the counsellor if they offer something or know someone who does.

2) Get family counselling. Parents can feel guilty about a late diagnosis and blame themselves for not recognizing the signs of ASD earlier. Feeling overwhelmed about the future of the young adult is also common. Siblings may also need support with the new diagnosis and how they best can help.

3) Reach out to the family doctor: Parents may also want to make an appointment with their family doctor to keep them informed. Short term medication may be needed if the young adult is experiencing depression or high levels of anxiety.

4) Research adult services in your area. A call to the local autism society is a good place to start because they will have a list of providers and agencies. Make a list of what services might be needed: work support, post-secondary support, independent living skills training, and social skills training. Most post-secondary institutes have a service for students with disabilities. There are also options like auditing courses so there isn’t the pressure of exams and papers. Tackle each of the things one by one – nothing needs to be solved over the short-term.

5) Look into province-wide services. Go to the provincial government’s website and read about Persons with Disabilities. There are tax breaks, benefits that can be applied for, and housing support. Investigate legal guardianship, trusteeship, power of attorney and a trust. The Office of the Public Guardian and Office of the Public Trustee will have information on this. Again, this is not something that has to be done right after receiving a diagnosis, but it’s good to start thinking about it and gathering information.

6) Educate yourself. Read great books about adults on the spectrum. Temple Grandin, Daniel Tammet, and Donna Williams are successful adults with inspirational stories to tell. There are more authors writing about topics that affect adults – check out our bookstore to see the wide variety of what’s available. Talk to other parents who are further along on the adult journey and ask questions. Parents are a wealth of information and most are eager to share valuable information.

7) Keep calm and know that this is a process. It will take time to get supports in place and there will be mistakes made along the way. Some supports will work and others won’t. Remain flexible and don’t think of mistakes as failures. Any work, reading and research that are done on behalf of the adult will only benefit.

Recommended Reading

    1. Adult Life with Autism Spectrum Disorder: A Self-Help Guide
    2. Life and Love: Positive Strategies for Autistic Adults
    3. Preparing for Life: The Complete Handbook for Transitioning to Adulthood

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  1. Brenda Hutto says:

    I am a mother, and my daughter is gay, and  disabled with Lupus, and her girlfriend has been diagnosed with the higher spectrum of autism. They have lived with us for now 6 years, and my daughters girlfriend can be very disrespectful, and unappreciative. Her and my daughter get into fist fights, and her girlfriend tells me to f… Off Bitch, and calls her Grandma that’s in California to call the police on me that I’m beating her! Which I would never do! It’s so hard living with this girl! That shows no respect. She’s 27 years old and acts like a child. I have tried so hard to have compassion and I have done everything I can think of to do everything and anything to get along with this young lady. But I just keep getting disrespected.!  How do I learn or cope with this. I can’t never have a adult conversation with her she goes into complete meltdowns! I have to walk on eggshells in my home! We have given her a free home to live in, and still no respect. Please help me! I want this to be ok!

  2. Matthew Mazer says:

    Thank you for this, Maureen. I was diagnosed at the beginning of the month but I always suspected it when I was a child. In elementary and high school, I would always be nice and friendly because of the whole “treat others the way you would have them treat you” thing and I found it hard to make friends and just felt totally outcast. I would ask my parents if they’re sure I didn’t have ASD and they would tell me “no.” I’ve been seeing a psychiatrist for a year now after begging my parents that I wanted help and they would tell me I don’t need it either. I met with him when he was on call at the hospital in Oshawa and he said that based on his observations since we’ve started talking that he believes I do have a mild case of ASD. One main thing is my dad’s sister in law. She never made any attempts to be nice to my mother for the sake of my parent’s relationship at the time. My only real memories of my aunt are her screaming her face off at my mom just because she could. I was born in 1989 and I’ve never been close with that part of the family. Come 2003, my aunt announces she’s moving to Toronto for the kids and when my parents divorced in 2011, she came back into my life when I wasn’t expecting it. My dad and the rest of his family tell me I’m “pathetic” for backing out of things when my aunt says she’ll get involved. I took her disrespect towards my mother as not only disrespecting my mother but my father, brother and myself as well. I’m struggling with how to open up to them about this because I’ve tried to tell my dad that my aunt makes me so uncomfortable that I’d shoot myself if she were my mother as “playing games” but I’m not. They keep telling me to get over it and move on but I can’t. You mess with my family, I’ll mess with you. Sorry for the length of the comment Maureen but it feels so good to let this all out now.

  3. My granddaughters are 25, they are identical twins. I am sure they are high functioning on the autism spectrum. Their mother does not want to know about this. One of the girls was tested in kindergarten but was told they couldn’t say she was, but had central auditory processing difficulties. When they were teenagers it became more apparent to me. The hard part is getting my daughter to accept this. It would I am sure help her understand them better. They worked as cashiers for 5 yrs, but recently quit and are happier at home. I am so worried about them.

  4. Marty Giles says:

    Do you have advice for people diagnosed as adults whose family don’t want to be involved in getting help for their adult child? My family was very standoffish when I told them about my diagnosis. They change the subject whenever I bring it up. It’s been hurtful and difficult trying to get support on my own when they seem so uninterested. They seem to think it’s just another one of my “intense interests” (isn’t that ironic)

    • Oh Marty! I am so sorry that your family is not being supportive but there is a lot you can do for yourself. Please read my article Am I Autistic – If you scroll down to the heading What to Do Next After Receiving an Adult Autism Diagnosis you’ll see links to support groups online and other resources. You could also contact your local autism society as most offer supports for adults and will give some guidance.

      Let me know if these ideas are not working and I can try and come up with some other ideas. Sometimes parents are in denial and don’t want to hear the truth. I applaud your courage and for doing what is the right thing for yourself. Some people will never understand no matter how hard we try to get them to.

  5. Julia Kerry says:

    I was diagnosed when I was a child. My brother had very severe Asperger’s and my parents decided to get me tested too. They never told me I had it growing up because they didn’t want me to feel stigmatised. I wonder sometimes whether I would have had an easier time of it growing up if I could have had the resources and knowledge to deal with it properly

    • I think knowledge is power and when you know something about yourself, you can seek the information and supports you need to succeed. It’s like not telling someone they have an illness when if they knew, they could maybe follow the right diet or take the right medications. Both of my adult children know their diagnosis and are stronger because of it. My daughter has the same name as you. She talks about her strengths and gifts and also realizes some aspects of her autism create the need for additional support.

  6. Sandy says:

    Our family has reason to believe that our adult daughter falls on the spectrum…does anyone have a starting point for broaching this conversation with ber? I want her to be as successful as she can in life and that would mean help and a much different approach to living for her, but she:s functional enough that the suggestion will likely be unwelcome

  7. Julie Cottrell says:

    Very helpful 

  8. Very useful! Maureen, are you aware that Edmonton now has an Adult Diagnostic Clinic at the Glenrose Hospital? Contact me for more information!

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